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UNIVERSITY LIBRARIES

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3129300876

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

r

This is to certify that the

dissertation entitled

A STUDY OF LIFELONG TRANSITIONS, EXPERIENTIAL LEARNINGS, AND
COPING RESPONSES 0F SIX FEMALE SYSTEMIC LUPUS ERYTHEMATOSUS
PATIENTS BETWEEN THE AGES 0F 20 AND 51 YEARS

presented by

James J. Scott

has been accepted towards fulfillment
of the requirements for

Ph.D. degree in Educational Administration

 

 

 

 

Date November 6, 1991

 

MSU is an Affirmative Action/Equal Opportunity Institution 0-12771

 

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A STUDY OF LIFELONG TRANSITIONS, EXPERIENTIAL LEARNINGS, AND
COPING RESPONSES 0F SIX FEMALE SYSTEMIC LUPUS ERYTHEMATOSUS
PATIENTS BETWEEN THE AGES 0F 20 AND 51 YEARS

By

James J. Scott

A DISSERTATION

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY
Department of Educational Administration

1991

I‘v”

0(7)—

ABSTRACT

A STUDY OF LIFELONG TRANSITIONS, EXPERIENTIAL LEARNINGS, AND
COPING RESPONSES OF SIX FEMALE SYSTEMIC LUPUS ERYTHEMATOSUS
PATIENTS BETWEEN THE AGES OF 20 AND 51 YEARS

By
James J. Scott

The purpose of this study was to understand the life histories
and experiential learnings of six persons with systemic lupus
erythematosus (SLE) and to determine the kinds of transitions,
losses, and coping behaviors that were prevalent in this group. The
limiting factors for involvement included: female, ages 20 to 51,
and 5 years diagnosed with SLE.

The study incorporated a combination of research techniques.
Each subject was given three survey instruments and a series of
interviews. The interviews were based in part on preliminary data
obtained from the survey instruments. The survey instruments
included the Lifeline Inventory, Life Changes Inventory, and
Response to Loss Inventory. These instruments helped identify and
record significant events in the lives of the subjects. In
addition, attitudes and perspectives related to their losses were
identified.

The' data were reported in three major sections: subject

profiles providing a brief life history of each participant, summary

James J. Scott

of the Response to Loss Inventory, and assertions that evolved as a
result of the interviews and inventories. Quotations and vignettes
were used to frame this section. The assertions section had two
parts--original assertions and new findings.

Four categories of conclusions were identified. The key
factors contributing to coping and management of stress were:

l. Beliefs of the subjects--a belief in a higher power as a
source of strength and energy.

2. Factors related to establishing and maintaining hardiness:
(a) clear priorities create order, and (b) letting go is a source of
power.

3. Actions taken by the subjects related to coping-—positive
self-care can lead to more effective commitments.

4. Transformations and experiential learnings related to loss:
(a) some events in life cannot be anticipated or planned, (b) there
is always more than meets the eye, (c) where there is commitment
there is power, (d) what you focus on grows, (e) live now, and (f)

love can heal.

Committee chairperson: Dr. James E. Snoddy

ACKNOWLEDGMENTS

This research would not have been possible without the support,
effort, and love of a number of very special people. First of all,
a special thanks to those unnamed subjects who shared their life
stories and whose vision it was to contribute to others who are
faced with chronic illness with their own stories. They are truly
heroes.

Second, I would like to thank Cheryl Saylor for being the
inspiration to venture into this project and John Schneider, who
provided access to his sensitive tools for investigating loss and
transformation and for his support in the interpretation of the
data. I would further like to thank Dr. Richard Gardner, Dr. Doug
Campbell, and Dr. William Hinds, who as a committee contributed to
my efforts with positive evaluation and support for the duration of
this research. They also were my guides in a number of courses that
prepared me for this journey. I would especially like to thank Dr.
Jim Snoddy, whose coaching and input I valued most highly of all.
He was always there in positive, supportive, and constructive ways.

Finally, I would like to thank my loving wife, Lisa, and my
children for their unending patience and encouragement as I have
worked through this process. Their conditional love has provided me

with the commitment and effort to complete this dissertation.

iv

TABLE OF CONTENTS

LIST OF TABLES .......................

Chapter

I. INTRODUCTION ....................

Importance of the Study ..............
Major Assertions .................
Research Questions ................
The Sample ....................
Sources of Data ..................

Primary Sources .................

Secondary Sources ................
Analysis of Data .................
Definition of Terms ................
Organization of the Dissertation .........

II. REVIEW OF THE LITERATURE ..............

The Picture of Lupus ...............
Systemic Lupus Erythematosus (SLE) .......
Chronic Illness .................
Stress, Loss, Lupus, and Chronic Illness . .
Coping .....................

III. METHODOLOGY AND PROCEDURES .............

Factors Influencing the Design ..........
Interview and Data-Collection Process .......
Quantitative Research Instruments .........
Qualitative Research Focus ............
Chronological Steps in Conducting the Research . .
Summary ......................

ANALYSIS OF THE DATA ................

Introduction ...................
Profiles of the Subjects .............

Marilyn ..................... 53
Anne ...................... - 56
Beth ...................... 61
Geraldine .................... 64
Sarah ...................... 66
Teresa ..................... 72
The Response to Loss Inventory .......... 80
Highest Level of Agreement ........... 80
High Agreement ................. 83
Low Agreement .................. 87
Significant Disagreement ............ 94
Summary ..................... 100
Assertions .................... 101
Original Assertions ............... 101
Additional Findings ............... 119
Chapter Summary .................. 135

V. IMPLICATIONS, DESIGN RECOMMENDATIONS, CONCLUSIONS,
AND CLOSING OBSERVATIONS ............. 137
Implications ................... 137
Design Recommendations .............. 139
Conclusions .................... 140
Category 1 ................... 141
Category 2 ................... 144
Closing Observations ............... 148

APPENDICES

A. THE LIFELINE .................... 152
B. TAPED INTERVIEW FORMAT ............... 153
C. THE LIFE CHANGES INVENTORY ............. 154
D. THE RESPONSE TO LOSS INVENTORY ........... 166
E. DIMENSIONS OF RESPONSE TO LOSS ........... 183
F. TABLE OF VALIDATION (RESPONSE TO LOSS INVENTORY) . . 185
G. INFORMED CONSENT FORMS ............... 186
H. LETTER OF INTRODUCTION TO PROFESSIONALS ....... 188
I. LETTER OF INTRODUCTION TO PROSPECTIVE SUBJECTS . . . 189

J. NATIONAL AND STATE ORGANIZATIONS CONTACTED FOR
THE STUDY ...................... 190

vi

Page

K. RISK-TO-BENEFIT RATIO ................ 191
L. LETTER OF APPROVAL FROM THE UNIVERSITY COMMITTEE
ON RESEARCH INVOLVING HUMAN SUBJECTS ........ 194
M. SUBJECT PROFILE SUMMARY INFORMATIONAL BREAKDOWNS . . 195
REFERENCES ......................... 197

vii

Table

hWN

U1

F.1.

Summary of Individual
Summary of Individual
Summary of Individual

Summary of Individual

Summary of Individual
Summary of Individual

Summary of Individual

Reliability Coefficients for the RTL II ........

Subject
Subject
Subject

Subject

Subject
Subject
Subject

viii

LIST OF TABLES

Profile Data:
Profile Data:
Profile Data:

Profile Data:
Geraldine ......................

Profile Data:
Profile Data:

Profile Data

Marilyn

Anne . . .

Beth . . .

Sarah

Teresa . .

Page
53
57
61

65
67
73
79
185

CHAPTER I

INTRODUCTION

As an instructor for at least 15 years of stress management for
college traditional and adult nontraditional students, this
researcher has wanted to understand more completely how people deal
with the transitions of life. Marriage, birth, divorce, illness,
and personal failure are just a few of the kinds of transitions that
people are confronted with daily. It was understanding how people
deal with these transitions that interested this researcher.

The central focus of the writer’s teaching has been sharing
stress-management concepts and techniques by using parables or
stories. As an adult educator and learner, he has found that the
intimacy of his stories and the students’ involvement in their own
learning have significantly contributed to the students’ ability to
understand stress-management concepts on a more profound level. In
undertaking this research, it was important that it:

1. Be a source of intimate stories that reflect people being
confronted with significant life transitions.

2. Involve individuals who had been forced to face life’s
challenges over a long period of time. Systemic lupus erythematosus
(SLE) is a chronic degenerative disease that is difficult both to

diagnose and to treat. These factors are important because in many

ways this disease characterizes and parallels the transitions of
life in general. All people are confronted with losses that cause
them to adjust. I

3. Involve narrative opportunities rather ‘than quantitative
information.

4. Look at the participants’ life histories. The researcher
was interested in the relationship between one’s illness and
wellness and his/her outlook on life.

After* a series of interviews with allied professionals, a
preliminary review of the literature, and communication with various
support agencies, SLE patients were chosen as subjects for this
research. The nature of the disease and its correlation to chronic
illness make this research very transferable. Currently, there are
more than 500,000 diagnosed SLE and discoid lupus patients in the
United States. Most experts believe that this number may be low
because of the difficulties encountered in attempting to diagnose
the disease accurately. SLE is also part of a greater disease
category known as chronic illness. Approximately 22 nfillion
Americans have been identified as having chronic illness. In
addition to these factors, the disease has other characteristics
that make the research as it relates to stress, coping, and loss
very generalizable, including the following:

1. The disease is chronic and difficult to diagnose.

2. Because of the nature of the illness, there are often
periods of' remission and recurrence. ‘This leads an individual

through significant periods of transition and loss.

3. The disease is a result of an overly responsive immune
system. Immune-system-related diseases are on the rise, cancer and
acquired immune deficiency syndrome (AIDS) being the most visible.

4. The disease may attack and even tear down any organ in the
host’s system. This means a SLE patient could nfirror symptoms of
many other chronic illnesses, which might include kidney disease,
rheumatoid arthritis, and heart disease, to name a few.

There is a strong parallel between chronic illness in general
and SLE. In both, individuals are forced to face many unplanned
transitions that force them to cope and adjust to changing
circumstances.

A number of the basic elements of society are in turmoil. The
structure of the family has changed significantly in the last 40
years. Now, approximately one of every' two marriages ends in
divorce. This revolutionary change of the family unit and American
society is leading to recurring generations of dysfunction (Barna,
1989). Divorce, abuse, and violence have reached staggering levels
in recent years (Bureau of Census, 1988). Given these changes in
the family unit, we are seeing a basic change in societal values and
structure. Support for the individual from the family unit is
diminishing. The closely knit family is becoming a support group of
the past. Dysfunction breeds dysfunction.

Added to these changes has been an ever-increasing distancing
from each other. Individuals’ skill in communicating at intimate

levels, in sharing their innermost thoughts, is being compromised.

Television and radio are adding to this problem. Through
provocative, highly 'targeted advertising and program production,
adults and <children are being exposed to a multi-layered Ivalue
system that is different from past values (Barna, 1989). The
powerful realities of life are being replaced by fantasy and
tremendous amounts of superfluous information. These changes in
access to media and the deterioration of the family unit are
providing less opportunity for youths and adults to grow and
mature in positive environments. The images that are constantly
being flashed on the screen are becoming the new realities and
values of today’s generation. One can begin to see how these
significant changes can contribute to confusion and increasing
levels of individual transition.

The emergence of new levels of drug abuse, addiction, and
violence is presenting a dilemma that is unique to American society
(Smith & Smith, 1990). All these are reflections of growing levels
of dysfunction.

For these reasons, this study was focused on the lives of SLE

patients.

Importance of the Study
The researcher’s purpose in this study was to understand the
life histories of six persons with SLE and to determine the kinds of
transitions, losses, and coping strategies that were prevalent in
this group. Very little work of this kind has been done in the area

of SLE and coping. Furthermore, most of the support agencies for

SLE have been in existence for fewer than 20 years. The present
research was undertaken to provide some insight for others into what
life is like for a SLE patient and how a person with this chronic
illness survives.

As the world becomes more complex, there seem to be fewer
examples to which we, as evolving individuals, can look for models
of healthy behavior. The understanding of how one copes with life
and how one can survive with joy is clouded. The need to examine
how people face transition, cope, and survive the losses of life
with joy is greater now than ever before.

In addition, a number of diseases related to life style and the
environment are on the increase. Chronic illness is becoming an
ever-increasing factor in American society. At present, more than
22 million Americans suffer from chronic illness (Pitzele, 1985).
As technologies and abilities to prolong life increase, so does the
presence of those afflicted increase. SLE and discoid lupus
patients now number more than 500,000 and are in the category of
chronic illness (National Lupus Foundation, 1990). Many of these
diseases are related to how individuals handle their internal
environments, their ability to cope, their ability to develop
systems of eustress, and how they confront the world around them
(Krantz, Grunberg, & Baum, 1985).

The incidence of other immune-system diseases is on the rise.
Cancer is the most prevalent. More than 400,000 people annually die
from cancer (American Cancer Society, 1989). It is now believed

that all illness is, in part, stress related, and cancer is one of

the most significant (Davison & Neale, 1990). The use of tobacco
and alcohol is an example of how people choose to cope and how their
lives are negatively affected as a result of their choices.
According to the American Cancer Society, close to 90% of all lung
cancer is related to tobacco use. A significantly high percentage
of all cirrhosis of the liver is related to alcohol consumption
(Morra & Potts, 1987).

In addition, the presence of AIDS is contributing to the
already staggering problems with health care. AIDS is an immune-
system disease that is chronic and difficult to treat. There is no
known cure, and the disease is ultimately fatal. AIDS is forcing
society' to examine an entire set of' very difficult issues and
concerns. Many of these issues deal with people’s basic values and
morals. AIDS may force people to reestablish values that are very
different from the mainstream of society as it is known today. The
choices and the issues are quickly approaching. In 1980, the
disease AIDS was not even present in the medical books. In 1989,
the National Institutes of Health projected that there would be more
than 270,000 cases of AIDS in the United States by 1992. The World
Health Organization (1991) has predicted that there will be more
than 40 million cases of AIDS worldwide by the year 2000. This is
an increase of 10 million over previous predictions. If current
levels of the illness continue, these projections will be accurate,
and the year 2000 will be a very different time in the United States

and the world.

The present study was intended to provide a glimpse at how
people faced with recurring life-threatening transitions survive in
light of a changing society. If even a minimal sense of
understanding what SLE patients are confronted with is gained, and
how they may have developed systems for survival as a result of
their transitions, society can benefit. There is a possibility
that, as a result of this research and the sharing of experiences,
people can begin to see how others cope and learn from the
transitions of illness. A number of intimate samples of behavior
will be provided in this study: From these samples, readers may

gain a more personal perspective for their own behaviors.

Major Assertions

The assertions included below were developed from the initial
readings, the researcher’s work in the area of chronic illness, and
conversations with health professionals. These assertions provided
a starting point for this research.

1. Illness forces people to evaluate their lives in profound
and lasting ways. As a society, we have a great number of cultural
norms concerning how our lives should be and where our greatest
lessons in life originate. The effect that illness has on one’s
life is not always evident, nor is it often discussed. This
assertion concerns the depth to which one’s life is affected by
illness.

2. There can be a positive relationship between a person’s

illness and the quality of life as he/she perceives it. There is a

perception that as one becomes ill the quality of his/her life
decreases. The researcher was not sure one can make that
assumption. The quality of one’s life may be relative to the
particular“ point in 'the individual’s experience. 'The essential
question in life is how one can be happy, and whether one has to be

healthy to be happy is a real concern for many people.

Research Questions

In light of the researcher’s interests as an educator, he began
to look at some of the issues facing individuals with SLE and
chronic illness. The writer did a preliminary review of the
literature and spoke with a number of researchers and educators
regarding the purpose of this study. Those individuals included a
graduate studies support group. The researcher developed a number
of preliminary questions and submitted them for the support group’s
review. Additional questions were developed through the guidance of
the writer’s research committee, with a specific focus on loss.
These questions focused on four areas:

1. What kinds of transitions and experiences ch) SLE patients
face as they mature with their illness?

This category of questions helped in examining life transitions
in general and disease-related transitions in particular, i.e.,
diagnosis, remission, and related problems. The focus was on
looking at all transitions, not only those of the factors related to
illness. This line of questioning helped to frame the individuals’

life stories and to look at their illnesses in light of the whole of

who they were. In illness, one is confronted with a number of
issues that may be placed above other kinds of transitions in life.
The researcher sought to understand to what extent these complicated
and increased stress-related factors.

2. What kinds of life skills related to coping appear to be
most helpful?

Understanding the skills these subjects had used and trying to
get a sense from them as to which skills or support issues had been
most helpful was an important element of this research. All too
often, we see only the results of someone’s coping skills, but we do
not have the opportunity to understand what is occurring and how it
is functioning.

3. How are most effective coping skills learned?

The further implications of this study include how these skills
were learned and how they can then be transferred to other people.
The issues surrounding transference are key to involvement of this
kind of learning in an educational environment.

4. Are certain skills more meaningful at different stages in
one’s illness?

The notion that stages of illness and skills of coping are
standard throughout the various life spans needs to be looked at
more completely. How experience promotes healing and how insight
promotes well-being are two complementary questions.

5. Are there periods in which loss is identified as a signifi-

cant factor in the quality of one’s life with chronic illness?

10

There is a great deal of literature on the elements of loss and
its effect developmentally. The question of how loss relates to
chronic illness is important because it may provide understanding
that influences one’s approach to coping and treatment.

6. What social support is encountered, and how is the indi-
vidual affected?

The role of social support in chronic illness has been
discussed, but little has been written about the development of
social support systems. Researchers usually have addressed only
group perspectives and not the perspective of the individual.

7. Are there common threads that can be identified related to

coping and surviving with SLE?

The Sample

In this study the researcher focused on six individuals who
had had SLE for at least five years and had experienced recurring
periods of illness and remission. The age group was from 20 to 51
years. The sample included individuals who were married with
children, single, and single parents. Sample members had varied
levels of involvement both in terms of the disease and the length of
time with symptoms and diagnosis. Members of the group were all
females. The process for selecting SLE patients for involvement in

this study is described in Chapter III.

Sources of Data
Data were collected on two levels, primary and secondary.

Primary sources of data were those that provided information in its

ll

raw form, without interpretation from the subject. These included
interviews and reflective materials such as journals and art work.
Secondary sources were used to draw information of a more
quantitative nature from and about the subjects. Examples include
interviews with significant others and survey instruments. These

sources are described in the following paragraphs.

Primary Sources

Primary source identification is described in Chapter III.
Taped interviews were structured with the use of a tool called a
Lifeline (see Appendix A). Each participant was asked to create a
Lifeline. The individual was then asked to outline the events that
were significant to her life. The periods of life were identified
in the following manner: pre-illness, initial stages of illness,
illness/wellness stages, and major learnings from their experiences.
The interviews focused on describing the experiences that the
participant outlined and that were discovered in the interview
process. As part of the researcher’s teaching, he had used this
technique with well over 500 students. The technique provides a
powerful opportunity for intimate dialogue and rich glimpses of a.
person’s life.

Other primary sources included the review of those journals,
drawings, or articles the subjects had created. The Lifeline was

included in this category because it was a first—person narrative.

12

The following procedures were included in this study.

1. The life story was developed through interviews with each
person. I

2. Personal journals and written reflections were reviewed.

3. Site visits were made to the participants’ homes and work
places to understand better the environments in which they spent

their time.

Secondary Sources

The secondary sources used in this study were developed to
provide an additional perspective on the subjects, their experi-
ences, and the effect of those experiences on their lives, as
perceived by others or through exploratory surveys. These sources
helped in the triangulation of data and provided a means of validat-
ing the perspectives of the subjects. These sources were as
follows:

1. Taped interviews were conducted with one or more signifi-
cant others in the SLE patients’ lives. The persons involved were
family members, friends, or a therapist (Appendix B).

2. Schneider’s Life Change Inventory (Appendix C) was used to
help each participant review her life transitions and their
perceived value.

3. Schneider’s Response to Loss Inventory (Appendix D) was
used to evaluate the subject’s stage of loss or recovery. This

instrument was designed to identify the various elements of grief

13

(Appendix E). It has been validated and helped to provide another
picture of the subjects’ lives at a particular time (Appendix F).

4. A limited review of literature was conducted on the
following general topics: stress, coping, transition, managing,

SLE, and holistic approaches to treatment for SLE patients.

_flalysis of DaLa

The data were analyzed in the following manner:

1. The interviews were taped and reviewed in a systematic
manner. Vignettes and data were extracted from interviews to verify
or challenge the initial assertions. In addition, new findings
evolved from the data. This also helped contribute to the
evolution of new assertions.

2. This information was then triangulated with other written
materials provided by the participants. The additional written
materials included the Lifeline, the Response to Loss (RTL)
Inventory, the Life' Change Inventory (LCI), and journals and/or

other reflective work.

Definition of Terma
£211.09 Efforts to master conditions of harm, threat, or
challenge when a routine or automatic response is not readily
available (Lazarus 8: Folkman, 1984; Murphy, 1962; White, 1974).
Coping refers to things people do to avoid being harmed by life
strains (Pearlin & Schooler, 1978). Coping has been defined as the
overt and covert behaviors individuals use to prevent, alleviate, or

respond to stressful situations. Coping can occur before, during,

14

or after a stressful or challenging situation (George & Sielger,
1981).

Dysfunction. Disordered or impaired behavior related to
relationships with others. The term frequently is used to describe
an individual’s behavior in a social or family setting (Black,
1983).

m. A sickness with mind or body. Illness has been
defined further' as a disease and has been broken down in the
following manner: "dis-ease, ill at ease with one’s mind or body.

Illness is any departure from health" (Webster’s New World
Dictionary, 1968).

Remission. The act of lessening a degree of illness. There
are two types of remission, serological and clinical. Serological
pertains to test parameters in the blood. Clinical pertains to
observable parameters (Guyton, 1966).

Styaaa. Determined by the perception of the situation rather
than by the situation itself. Pascal (cited in Lazarus, Deese, &
Osler, 1952) defined stress as "a perceived environmental situation
which threatens the~ gratification of needs" (p. 177). Lazarus
clarified the concept by saying, "Stress occurs when there are
demands on the person which tax or exceed his adjustive resources."
"Stress is a state which arises from an actual or perceived demand-
capability imbalance in the organism’s vital adjustment actions
which is partially manifested by a non-specific response" (Monat &

Lazarus, 1964).

15

Sygtgmic lupus grythematosus (SLE). An inflammatory auto-
immune disorder. The disease affects many body organs, especially
the heart, lungs, spleen, and kidneys, About 85% of all SLE
patients are female, most of them between the ages of 10 and 50.
Although the cause of SLE is unknown, it is believed that people
with the disorder manufacture antibodies that attack their own body
tissue (Phillips, 1986). Onset of SLE is often during periods of
emotional crisis or during severe exposure to sunlight or X-ray.
Several drugs, including hydralazine, isoniazid, and certain
anticonvulsive medications, may cause the disorder as a side effect.
Viruses also may play a causative role (Grossel, Stansloski, &
Kramer, 1980).

Transitions. Periods marked by relational and personal
changes, including attempts to deal with upset, tension, or fatigue
and attempts to find new sources of support (Weis, 1976).
Transition may be further defined as positive or negative (Moos &
T50, 1976; Schlossberg & Leibowitz, 1980).

Triangulation. A data-collection and analysis process through
which a subject can be studied by the use of varied types of data
(Biklen & Bogdan, 1982).

Wellness. A process or life style that promotes making choices
and taking actions that allow one to work toward his/her physical,

emotional, and spiritual potential (Travis 8 Ryan, 1988).

16

Organization of the Dissertation

 

Chapter I included an introduction to the study, the importance
of the research, major assertions, research questions, a description
of the sample, sources of data, the risk-to-benefit ratio, the data-
analysis methods, and definitions of terms.

Chapter II is a review of literature. The chapter is organized
so as to help the reader understand the nature of SLE and explore
some of its correlations with chronic illness. A brief overview of
stress and coping is included, with specific attention to chronic
illness and coping.

The research methodology and procedures are described in
Chapter III. The data-collection procedures, interview process
(questions and settings), environmental scanning issues, and
qualitative-analysis factors are discussed.

Subject profiles, a summary of the RTL responses, responses to
initial assertions, the identification of new findings, and
additional insights are presented in Chapter IV. Chapter V contains
observations and recommendations for further study, implications of

the study, conclusions, and closing observations.

CHAPTER II

REVIEW OF THE LITERATURE

The Picture of Lung;

The amount of information in the fields of lupus, chronic
illness, coping, stress, and lifelong transitions is extensive. The
writer did not try to be all encompassing but focused on some of the
significant literature on the interrelatedness of SLE to loss and
chronic illness to stress. Its relationship to coping was explored.
The following review of literature has been organized to help the
reader understand the nature of SLE and to explore some of its
correlations with chronic illness and lifelong transitions. .After
this relationship has been established, a brief overview of stress
and coping is provided, with specific attention to chronic illness,

loss, and coping.

 

Systemic Lupus Erythematosus (SLE)_
' ‘-

Chronic illness can be a real and significant part of life
(Pitzele, 1985). In reading this section, one should keep in mind
that the presence of illness is a part of this journey of life for
all people. Illness has to be faced and embraced like all other
parts of life if we are to achieve our potential for high-level
well-being (Pelletier, 1977; Schuller, 1983). Part of understanding

our potential is to explore the unknown that weaves our lives into a

17

18

web of the mysterious. This understanding can help us embrace the
adventure, the joy, the sadness, and the beauty of life. The
intention of this review is to explore a few elements that we will
most likely be confronted with as we mature.

Twenty years ago, SLE was a rare disease. Only 40% of all SLE
patients were expected to live three years following diagnosis. Now
more than 90% will survive ten years or more (Phillips, 1986).
Today, SLE is recognized to be more prevalent than muscular
dystrophy; multiple sclerosis, cystic fibrosis, rheumatic fever,
pernicious anemia, Hodgkin’s disease, and leukemia (National Lupus
Foundation, 1990). Optimistically, one can extrapolate from these
statistics that increasingly more effective treatments will continue
to improve not only life expectancy but, more important, the quality
of life.

SLE is a chronic inflammatory immune complex disease of unknown
cause. SLE can affect virtually any body organ or system. Organs
that can be affected may include skin, joints, kidneys, brain,
lungs, and heart. Diagnosis is very difficult (LeMaistre, 1981;
Ragan, 1988). Many SLE patients reported that they sensed vague
aches or pains, or ran a fever with some frequency but not with any
predictability. Others reported that they stumbled unexpectedly
while walking. Stairs became increasingly difficult to navigate.
Some had weakened hands. Virtually all reported that they were
hesitant to face their_ physicians with such undefined problems

(Aladjem, 1985).

19

Part of the problem with the diagnosis of SLE is that it is a
chronic illness with many nonspecific symptoms that occur
intermittently and are similar to a number of other chronic
illnesses. Communicating these symptoms and their inconsistent
nature is difficult (Blum, 1972; Boyle, 1970; Francis, Korsch, &
Morris, 1969; Permut, 1989). Many of the symptoms create their own
anxiety because of their perplexing look—alike nature with a
multitude of other illnesses (Aladjem, 1985; National Lupus
Foundation, 1986).

Symptoms may include many of the following but generally do not
include all of them: chronic low-grade fever, chronic fatigue that
can easily be aggravated, aches and pains, loss of appetite, weight
loss, swollen glands, nausea and vomiting, headache, depression,
easy bruising, hearing loss, edema, and swelling. Other symptoms
that often are evident include a rash over the cheeks and bridge of
the nose, discoid lupus lesions, developing rashes after exposure to
the sun or ultraviolet light, ulcers inside the mouth, seizures,
anemia, Raynaud’s disease, bald spots, and organ involvement (Lapa;
Lifeline Book, 1988; Spelman, 1977). Symptoms involving organs may
include chest pain due to pleurisy and irritation of the membranes
lining the inside of the chest around the lungs, and pain due to
pericarditis. Muscular system and joint involvement may include
primary muscle weakness and aching pain along with arthritis-like
pain, swelling in the joints, redness, and stiffness. The blood may
also be affected with low red blood cell counts. White counts may

also decrease, thereby increasing the person’s susceptibility to

20

infection. Increased amounts of gamma globulin in the blood may
also be a problem with SLE, and blood tests may indicate a false-
positive test for syphilis. There is also possible involvement in
the heart and circulatory systems, nervous system, digestive system,
and kidneys. What is incredible is that the types of symptoms are
so varied that they mask the specific issues related to SLE
(Phillips, 1984).

Patients with SLE also develop distinct abnormalities of the
immune system. In addition in) making antibodies (specific
substances that help destroy foreign material entering the body
against bacteria and viruses), the bodies of lupus patients make
antibodies to their own cells. They are called antinuclear
antibodies. A diagnosis of SLE is likely to follow the discovery of
these antinuclear antibodies. The antibodies are also related to
one’s DNA (Aladjem, 1985; Lupus Erythematosus, 1985; Phillips,
1984).

The degree of symptomology that a patient may have will vary
significantly, depending on the intensity and the amount of
involvement the patient has with the disease ("Lupus Erythematosus,"
1985). Many also experience arthritic or swollen, inflamed joints.
Lungs and kidneys are involved about 50% of the time (Phillips,
1984).

Many times these symptoms come and go without pattern, warning,
or explanation (Lupus News, 1986). The adage, "well until proven

sick," is more often than not the case with SLE patients. The

21

notion of hypochondria is very often alluded to. In texts by
Aladjem (1985), Permut (1989), and others, this was mentioned
repeatedly. SLE is usually easier to diagnose when an individual
has many of the characteristic symptoms and signs, and, as may be
expected, diagnosis is made more difficult if none or only a few are
present. Aladjem ascribed the confusion about whether neurotics
fall prey to SLE, or whether SLE creates neurotics, to a combination
of factors:

The frequent lag time in diagnosis, the intense emotions

triggered by the disease and the potential for direct

involvement of the brain through inflammation all promote this
veil of deceit when it comes to trying to diagnosis Lupus.

(p. 76)

In the book Understanding Lupus, Aladjem provided a check list and
medical paths that help delineate the symptoms and issues related to
diagnosis.

During the child-bearing years, females have a significantly
higher rate of incidence than males. Females who are having
menstrual cycles are ten times more likely to contract the illness
than are males (Facts About Lupus, 1988). During premenstrual and
postmenstrual periods, females are only two and one-half times more
likely to contract the illness. Eighty-five percent of all persons
afflicted with SLE are female. Approximately 16,000 new cases are
diagnosed annually, and more than 500,000 Americans have been
identified with SLE of various types and degrees of involvement.
Minorities, including Blacks and Asians, have a higher incidence of

involvement (What Is Lupus, 1988). There is no cure for SLE, but

22

medical treatment can lead to control of the disease (What Is Lupus,
1988).

There are three types of lupus:

l. Discoid lupus affects the skin, causing a rash and lesions,
usually across the face and upper part of the body. The skin may
become quite disfigured as a result of this form of lupus.

2. SLE, usually more severe than discoid, can attack any body
organ or system, such as joints, kidneys, brain, heart, and lungs.
If not controlled, SLE can be life threatening.

3. Drug-induced lupus, caused by reaction to medication, is
the third form of the disease. Generally, when medication is
discontinued, the lupus symptoms becomes less significant or
disappear (National Lupus Foundation, 1990).

SLE can be characterized as a roller-coaster type of disease.
It is frequented by periods of remission with varying degrees of
flare-ups and organ involvement. Many times, when patients think
they have gotten through it and are in remission, they have a
"flare-up" and are right back where they started (Hogan, 1988).
Flare-ups can vary in terms of intensity. The word flare is a poor
descriptor for the actual reality of what may happen. A flare-up
may consist of mild joint pain and fatigue that may last a few days.
It may also consist of very severe joint and muscle pain with all
the other types of symptoms that have been described. It is not
uncommon for these flare-ups to force a person to be heavily
medicated and bedridden or hospitalized for a month or more. Flare-

ups may even result in death (Aladjem, 1985).

23

It is not uncommon for a person to feel perfectly normal one
day’ and that night become severely ill. Equally so, some SLE
patients: who experience flare-ups may not do so overnight, but
rather they might experience progressive decreases in their well-
being over a period of several days, weeks, or months. Because the
major complications of lupus may be preceded by milder symptoms, the
patients may be in a position to inform their physicians about what
is occurring. Fatigue and insensitivity to one’s bodily responses
may be a factor contributing to this, but this is not always the
case. Nobody knows his/her body better than the patient. The one
person who is in the best position to feel if the disease is flaring
up is the patient (Luc Senecal, 1986). Each person’s response is
unique.

The following excerpt from Empyacinq the Wolf (Permut, 1989) is
an example of the kinds of varied responses one might see with SLE:

Over a period of four years, my lupus had grown from a case

with no organ involvement to central nervous system lupus with

minor brain involvement. We just had to hope that the seizures

gguld not increase but would remain relatively manageable. (p.
Descriptors similar to this one were common in a number of the books
and pamphlets that were reviewed for this study (Aladjem, 1972;
Phillips, 1985).

Little information is available on the possible relationship
between the incidence and duration of combined serologic and

clinical remission (Heller & Schur, 1985; Luc Senecal, 1986). There

seems to be a great deal of initial evidence that the onset of

24

illness is accelerated due to stressful environments and chaotic
life styles (DeLongis et al., 1982; LeShan, 1959; Locke, Hurst,
Heisel, et al., 1979).

The odds of a quick, clear diagnosis and prognosis are not very
good. When the laboratory test results remain within the "normal"
range and the examination reveals nothing unusual, it is difficult
for' even the finest diagnostician to name this elusive illness
(Pitzele, 1985).

Additional indicators that can help provide a clearer diagnosis
include antinuclear antibody tests and antibody to DNA tests, blood
counts focusing (n1 white blood counts and related indices, and
kidney-function tests. There is a great deal of difference between
the narratives and written materials describing diagnostic options
of even five years ago and the new materials being published by the
national organization.

In a small percentage of cases, clinical and serologic
remission occurs, often without medication and sometimes lasting for
years (Heller & Schur, 1985).

Given all this information, scientists now believe that SLE
develops in individuals predisposed to it and that a viral infection
or similar stress can alter the delicate balance between normal
immunity' to foreign substances and reaction to one’s own cells
(Aladjem, 1985). Finding and removing such disease triggers would
have the potential to be therapeutically more definitive and far
more satisfying than the current option of trying to manipulate the

immune response of the host (Heller & Schur, 1985). A patient whose

25

disease remits "spontaneously" and who stays well deserves the

closest epidemiological scrutiny.

Chronic Illnaaa

Many of the issues related to lupus are very similar to those
of' other chronic illnesses (Pitzele, 1988). SLE is clearly a
chronic illness whose presence seems in) be increasing (Lupus
Foundation of America, 1988). Part of this apparent increase is due
to the ability of the medical community to diagnose SLE more
accurately. The chronically ill face a great number of factors.
This is unique to SLE (Hogan, 1986). These common links may
include:

1. Chronic fatigue. Fatigue from chronic illness can actually
cause "fatigue of chronic illness." Inactivity inhibits the
functioning of the autonomic nervous system. The blood circulates
more slowly, the poisons in the blood are not oxidized, and the
system becomes more sluggish (Aladjem, 1972; Jackson, 1979; Nguyen,
1984).

2. Loss. The losses of chronic illness are endless. The
ability to whistle, to walk, to play, and to live in the same ways
can be destroyed (Aladjem & Schur, 1972). Any loss includes more
than one dimension (Schneider, 1984). In Schneider’s (1989)
Response to Loss Inventory, these dimensions are explored. They
help provide a framework for understanding the transformative
processes of loss. They further help define the interrelatedness of

loss and grieving by providing a model for understanding loss.

26

3. Changes in relationships. Any relationship that meets
important needs, or through which lasting patterns of behavior are
developed, can be lost when changes occur, especially those related
to chronic illness (Schneider, 1984). The stress of chronic illness
can create a tremendous amount of uncertainty in a relationship.
Coping with a serious illness is a hardship for both the patients
and their loved ones (Ragan, 1988). Chronic illness creates a
situation in which there is little certainty except the illness and
questionable circumstances related to health (Pitzele, 1987).

4. Diagnosis is difficult. The journey from health through
lupus is a confusing diagnosis and is riddled with questions and
confusion (Aladjem & Schur, 1972).

5. Life style issues. The chronically ill especially
recognize that there may be times when activities may have to be cut
back. and immobility' will result. By planning ahead and having
relaxing activities on hand to engage in during these times, boredom
can be avoided (Lewis, 1985).

Additional concerns can include pain management, changes in
expectations, and the ability to communicate both symptoms and
responses to one’s illness (Gould, 1977; Schneider, 1990; Viorst,
1986; Weenolsen, 1988). Losses can be compounded not only by
illness, but by developmental issues related to loss and maturation
as well (Schneider, 1990). Death, too, is present in a more real
and frequent way. All of these concerns can be significant

contributors to stress at many different levels (Pitzele, 1985).

27

Common to all persons with significant illness and especially
related to newly diagnosed patients is an enormous craving for a
reliable guide to their condition. It needs to be written in clear,
accurate, sensible, compassionate, and practical terms. Seldom can
physicians and health care professionals be accessible enough to
satisfy the patient’s emotional need for reassurance and to answer
the countless questions that arise (Ley, 1967; Luc Senecal, 1986).
According to current estimates, more than 55 million Americans
suffer from chronic illnesses. Approximately 30% of America’s adult
population suffers from a chronic illness at varying levels of
intensity (Pitzele, 1985). The following list of chronic illnesses
(Pitzele, 1985) is extensive and varied. It does not represent all

such illnesses.

Rheumatoid arthritis 16,000,000 patients
Osteoarthritis 16,000,000 patients
Stroke 8,700,000 patients
Heart disease 4,600,000 patients
Other arthritics 4,000,000 patients
Lung disease 3,150,000 patients
Diabetes 2,500,000 patients
Gout 2,500,000 patients
Parkinson’s disease 1,500,000 patients
Lupus 500,000 patients
Diabetes Type I 500,000 patients
Multiple sclerosis 250,000 patients
Adult-onset dystrophies 200,000 patients

Other chronic illnesses that are not represented on this list,
such as human immuno virus/acquired immune deficiency syndrome
(HIVB/AIDS) and sexually transmitted diseases syndrome (STD), are
not even considered in these numbers but are increasing at

incredibly high rates (National Centers for Disease Control, 1988).

28

SLE is clearly a chronic illness that shares many of the same
patterns and problems of other chronic diseases. Many of the issues
related to diagnosis, treatment, and coping are interrelated

(Pitzele, 1985).

Stress, Loss, Lupus, and Chronic Illnaaa

Coping with the losses related to chronic illness is an
extremely complicated and difficult process to understand and define
(Hobfoll, 1988). Many times people are unaware of the possible
alterations in one’s view of life that may occur as a result of loss
(Silver & Wartman, 1980). Often individuals who are experiencing a
loss are asked to limit their responses to grief and not to dwell on
their problems (Glick, Weiss, & Parks, 1974; Maddison & Walker,
1967). To limit the responses to loss and avoid grieving has a
potential for grave problems (Schneider, 1984). Our society often
is insensitive and ill prepared to address the needs of those who
have experienced a loss or who are chronically ill (Wright, 1983).
If people could identify their needs and the needs of those around
them related to loss, meaningful interventions could be developed
and positive support groups could be more effectively designed
(Bracken & Shepard, 1980). Coping with illness and loss involves
all of the major systems of the body, occurs in all social systems,
and plays a ‘vital role in one’s development (Schneider, 1984).
Words like worries, fears, goals, hopes, and faith can all be
included as descriptors of behaviors and responses to stress (Kasi,

1966). It expands beyond the known and includes the spirit in

29

indefinable and mystical ways (Simonton, Matthews-Simonton, &
Crieghton, 1975). There seems to be no single absolute definition
of stress. This may be an indication of the complexity and the
diversity of thought on this subject.

The accumulation of perceived changes, both chronic and acute,
that one encounters in the process of living can be used as an
umbrella for discussion related to stress (Giradano & Everly, 1987).
Research has supported the view that there are high positive corre-
lations between the frequency of major events in one’s life and
illness (Dise, 1988; Holmes & Rahe, 1967; Kobosa, 1979; LaShaw,
1966; Rahe, Ryman, & Ward, 1980; Sarason, Johnson, & Siegel, 1978).
There is further evidence to support the notion that the presence of
frequent minor problems greatly affects one’s ability to cope
(DeLongis, 1982; Lazarus, 1984). A number of others, including
Mueller, Eward, and Yarvis (1977) and Vinokur and Selzer (1975) have
contributed to this body of knowledge related to the frequency of
problems and their effect on coping. There is still a debate as to
whether undesirable events are the only things affecting how one
copes, versus change itself. Rose (1980) interpreted stress in this
way:

The adult portion of the life span . . . is peppered with

socially generated life strains that differ with regard to

their persistence and predictability. Many life strains may
have their roots in the fundamental arrangements of society but
societies are at the same time also the source of many
efficacious devices people use to withstand the full impact of
the strains. Indeed, as varied as the life strains are, the
ways of responding to them are richer yet. One learns from his
experiences, from his membership groups, and from his culture a

vast array of acceptable modes of anticipating, appraising, and
meeting challenges. If these modes fail him, either because of

30

their inherent lack of coping efficacy or because the
challenging circumstances are not amenable to individual coping
efforts, then he becomes vulnerable to psychic distress. But
if one copes effectively, as people typically appear to do,
then life strains may even have a positive contribution to
one’s deve10pment through the adult portion of the life span.

Although much is still conjecture, we can be quite certain that

to understand the well-being of adults, we need to observe the

unfolding of the circumstances and events they experience, the
meaning of the experience for them, and their attempts to avoid
being harmed by it.

Earlier stress theorists recognized the cognitive components of
stress and the physiological processes of stress separately. ‘They
generally’ did not integrate these components into major stress
theories (Cannon, 1935; Grace & Graham, 1952; Selye, 1974). They
tended to present these components as independent, governed by
separate sets of rules. Subconscious processes have also been given
little attention in stress research, but this does not mean they
have been disproven. For the most part, they have not been studied.
Recent research in health psychology has pointed to the need to
consider the integration of cognitive and biophysiological stressors
as factors to be considered jointly (Gatchel & Barum, 1983;
Greenburg, 1989; Wolff, 1988). Stress and its management clearly
span all of these parameters.

The relationship of stress, chronic illness, loss, and coping
is complex and significant to all people. Correlations with the
onset of illness and disease have been established in various
studies throughout the last 40 years (LeShan, 1966; Mechanic, 1966;
Simonton & Matthews-Simonton, 1975; Wolf, 1953). Excessive stress
can be harmful to the human organism at many levels, to both the

nondiseased and the diseased person alike. Stress can exacerbate

31

many disease forms and may, in fact, be a significant marker as to
the onset of the illness (Dohrenwend & Dohrenwend, 1974; LeShan,
1966; Mechanic, 1978; Wolff, 1988). The correlation with other
illnesses has been identified many times. Wolf (1953) demonstrated
the effects of stress on the digestive system, and LeShan (1966)
studied its effects on the development of cancer. In 1975, Simonton
and Matthews-Simonton did further work related to stress and cancer,
and in subsequent years this work has expanded.

In 1955, Engel studied stress and ulcerative colitis. Friedman
and Rosenman (1977) identified the relationship between stress and
coronary heart disease. Later researchers included anger and
hostility as components in the development of the disease. Ischemic
heart disease was proven to be four times more frequent in subjects
with Type A behavior than in those with Type B, and arterial
hypertension was 1.6 times more frequent in anxious and aggressive
subjects (Damsa, Moscu, Schioiu, 8 Cucu, 1988). Wolf and Wolff
(1955) studied stress and headaches, and Benson and Peters (1977)
looked at the effects of stress on blood pressure.

As one begins to explore the sources of stress, a number of
elements must be considered. Factors such as perception of change,
threat, and loss are all potentially significant stressors. Both
the threat of potential loss and actual loss can be significant
stressors (Felner, Farber, & Primavera, 1983; Schneider, 1986;
Schonpflug, 1985). The effect of stressors can be related to a

number of elements. The elements can be identified as chronic or

32

acute, positive or negative, and real or imagined. For SLE patients
in particular, and people with chronic illness in general, a number
of elements of loss carry the potential for being significant
stressors. Loss is a key factor in illness and life (Thoits, 1983).
Many elements of one’s life change with illness (Baum & Gatchel,
1981; Kasi & Cobb, 1966; LeShan, 1966). These include, but are not
limited to, one’s ability to participate on a day-to-day basis in
activities and functions (Permut, 1987), the ability to communicate
and interact socially, the ability to sustain oneself with work or
play in ways that have been basic to one’s nature (Schneider, 1984),
a diminished ability to anticipate and have expectations on a day-
to-day basis, and compromises in intimate relationships (Aladjem,
1985).

Additional factors that contribute to the stresses that may be
encountered as a result of the preliminary onset of illness may
include the following:

1. A change in one’s ability to trust his/her own health and
therefore plan for the future, in some cases on a daily basis.

2. The onset of various symptoms, which creates continuously
changing internal environments and predictable daily schedules.

3. The loss of one’s freedom due to physical or emotional
restrictions.

4. The intrusion of medical personnel into one’s privacy. The
physical and mental domains become open for the medical community to

explore in their quest for well-being.

33

5. The type of personal paradigm an individual has related to
health, and how it may be challenged (Hinds, 1983).

As time passes, a number of other concerns are presented to the
chronically ill person. These include learning to live with change
and unpredictability, the possibility of pain management,
relationship changes related to expectation and illness, depression,
financial and job-security issues, and the presence of chronic
fatigue or being easily fatigued (Aladjem, 1985; Permut, 1989;
Pitzele, 1985).

Loni—"9.

Kobasa (1979) found that people who did not get ill after
undergoing many stress experiences had a strong sense of
meaningfulness. They also had a commitment to self, a vigorous
attitude toward life, and an internal locus of control. This Kobasa
termed "hardiness," which she defined as a sense of emotional
insulation. A number of factors seem to contribute to this sense of
hardiness (Tang, 1987), but further investigation needs to be done
in this area.

The lack of a secure and loving environment has been correlated
to a breakdown in immunological systems that fight illness (Turk,
Ruby, & Salovey, 1984). Social support has also been identified as
a potentially important moderator of the stress-illness relationship
(Dakof, 1987). People with high-level social support have less
concurrent. strain, future strain, concurrent illness, and future

illness than do those without such support (Tang & Mamontree,

34

1989). Lack of exercise and nutritional deficits also can increase
one’s sensitivity to negative information from the environment.
These deficits can influence the onset of depression and’ thus
negatively affect the immune system. The emphasis in stress-illness
research recently has begun to shift toward the study of resistance
resources. For the person who is already chronically ill, many of
these factors are exacerbated (Burckhardt, 1953).

A number of factors contribute to coping at multiple levels;
some of them are:

Ephanced copingpskills. Enhanced coping skills were related to
enhanced mood and personal empowerment (Janis, 1985). These skills
may promote the ability to manage one’s life in positive ways. They
may include but are not limited to relaxation training, meditation,
exercise, proper nutrition, problem-solving skills, empowerment
skills, time management, and assertion skills (Janis, 1985).

Family resources. Family resources were related to better
immunological functioning (Simonton, 1978).

Patient responsibility. Patients who took responsibility fer
their own health and well-being and who had a strong sense of family
social support were much better off than those who did not. This
was especially true if the support started early in the disease
process. These patients were more likely to adapt to and cope
effectively with their illness, thus affecting the disease
progression, morbidity, and mortality (Locke et al., 1979; O’Brien,

1987; Wolf, 1989).

35

Coping with chronic illness presents both a challenge and a
threat for patients (Leventhal et al., 1987). Coping strategies,
when effectively used, are powerful methods for influencing one’s
functioning and well-being. Understanding the processes patients go
through when confronted with chronic illness can make a major
difference (Burckhardt, 1987). The idea of coping simply means one
is adjusting to his/her illness. To adjust simply means the person
is accepting circumstances and making the best of the environment.
From a perspective of establishing a higher level of well-being, one
may view coping as an element of accepting a sense of powerlessness
(Benson & Kennally, 1976). To seek a higher level of well-being may
necessitate developing new skills. This development would most
likely be both mental and emotional (LeMaistre, 1981). Issues
related to self-responsibility and life force are powerful
enhancements of one’s well-being during crisis but are extremely
difficult to pass on to others in a formal sense (Ardel, 1987;
Cousins, 1986; Travis, 1988).

In looking at the issues of self-responsibility and spirit, it
can be seen that the environment and social support play a large
role in coping styles (O’Brien, 1987). There is a strong
correlation between coping dispositions of individuals and the value
system of the surrounding society (Pearlin, 1978). It seems fair to
state that interest in coping far exceeds the knowledge about it.
Mechanic (1978) argued that there are basically two components of
adaptation: (a) dealing directly with the situation, or coping; and

(b) dealing with one’s feelings about the situation, or defending.

36

The amount of stress one experiences is therefore dependent on the
availability and effectiveness of one’s means for coping and
defending.

A major problem with the concept of coping related to chronic
illness is that people tend to focus on an "illness model" rather
than a "wellness model." The illness model focuses on one adapting
to. one’s situation, whether he/she likes it or not (LeMaistre,
1981). For the healthy person, this belief structure works
reasonably well. It is when the individual becomes chronically ill
that the system does not serve him/her well. Illness challenges
one’s basic belief system. Consideration needs to be given to an
alternative to this kind of model. A true adaptation of a wellness
model needs to be made. This adaptation suggests that development,
emotional growth, and striving instead of surrender to a less-than-
satisfying existence are important issues (Simonton et al., 1978).

Data suggest that individuals who have a locus-of—control
orientation of powerful others respond to chronic illness with
emotionally based behaviors. Chronically ill individuals who are
physically dysfunctional tend to respond with palliative coping
strategies (Keller, 1988). The statement "I am thankful that I have
my health, at least" no longer means anything. A basic belief
focused on "It could be worse" ultimately may take its place
(Pitzele, 1985).

Understanding stress and how to manage it can be helpful to

one’s disease state (Mechanic, 1978). Literature on both humans and

37

animals seems to support the concept that the way one copes with
stress is an important modifier of the stress-disease relationship
(Coyne & Lazarus, 1980). I

There is also evidence that the way people cope with illness or
surgery can affect the process of their recovery (Roskies, 1987).
Coping related to chronic illness can also be enhanced when the
patient has a thorough education about his/her disease, the
treatment options, and self-care concerns (Phillips, 1985). Such
knowledge helps the patient with chronic illness learn to control
elements. of' his/her illness instead of being controlled by it.
Patients can learn to fight back, rather than be invaded by the
disease, and join in with their physicians to gain an element of
control over their illness or, if not their illness, their quality
of life (Luc Senecal, 1986).

The range of possible interventions is great. No single
stress-management approach is completely effective (Everly &
Giradono, 1986; Gatchel &. Baum, 1983; Greenberg, 1988). It. is
generally thought that a system of management that involves the
individual at many levels and through several modalities has the
best potential to affect his/her long-term well-being. The stress-
management concept of wholism is one in which a collective approach
is used, which intervenes at many levels to help a person recapture
equilibrium (Greenberg, 1990; Hobfoll, 1988).

In approaching the negative elements of managing situations and
responses, Lazarus and Launier (1983) divided coping techniques into

two general categories: (a) instrument focused, which include

38

information [gathering, problem solving, communication and social
skills training, time management, mobilizing supports, and direct
efforts to change the environment or to remove oneself from it; and
(b) problem-focused and palliative actions, which are focused on
regulating emotional distress. These include denial, diverting
attention, searching for meaning, emotional distancing, expressing
affect, cognitive restructuring, and relaxation training (Lazarus &
Launier, 1978).

Stress-related transactions between the person and the
environment play a significant role in one’s ability to cope (Baum &
Singer, 1981; Billings, 1983; O’Brien, 1987). Other models focus on
creating positive consequences of stress. These models help
individuals develop activities and methods that create elements of
joy in one’s life. This joy affects perceptions and responses to
stressful life situations at many levels (Moss, 1976; Nguyen, 1984;
Pearlin & Schooler, 1978). This can be described as an investment
in and planning of resources for the future, thus providing hope and
optimism.

Although little is known about the accumulation of resources,
there is evidence that the accumulation of positive elements creates
an insulating mechanism against stressor events (Cohen & Hobohman,
1983). The nurturing of positive events can contribute to an
emotional uplifting that provides a basis of insulation for the

individual as he/she encounters life situations that are perceived

39

as stressful. This kind of thinking is also consistent with the
development of what Kobasa (1979) termed the hardy personality.

The sum total of these issues is not just with coping. These
issues focus on helping individuals understand that they can survive
positively and live at higher levels through acceptance and assuming
a high degree of self-responsibility in their choices.

Although all stress management is destined to increase coping
skills, for most stress problems no single outcome can be labeled
perfect. Many stress problems have a range of possible acceptable
outcomes. The teaching of coping skills borrows from both
educational and psychotherapeutic environments (Roskies, 1987). The
phases of acquiring coping skills include awareness of unmet needs,
motivation to change, education, actual acquisition of skills,
rehearsal of specific coping skills, and support for implementation
of these new skills (Greenberg, 1989).

Findings have suggested that stress-management programs produce
beneficial changes, even though the specific reasons for improvement
might be difficult to assess (Wheeler & Munz, 1985). Given these
design models, there are many intervention configurations. These
interventions can be discussed in a variety of frameworks. Giridano
and Everly (1987), Greenburg and Page (1988), and Gatchel and Baum
(1983) all used basic variations of descriptors for interventions
that are common in the field of managing stress. These
interventions include a broad spectrum. Interventions are
activities that block a stressor from resulting in negative

consequences such as physiological discomfort, anxiety, illness, or

40

disease. These interventions may include biofeedback training,
exercise, environmental engineering, social engineering, rational
emotive therapy, and a number of other skills or processes
(Greenberg, 1990).

In Anatomy ofaan Illness as Perceived by the Patient, Cousins

 

(1989) stated: "I have learned never to underestimate the capacity
of the human mind and the body to regenerate when the prospects seem
most wretched. The life-force may be the least understood force on
earth" (p. 248). James (cited in Healers on Healing, 1989) expanded
on this thought when he stated:

Human beings tend to live too far within self-imposed limits.
It is possible that those limits will recede when we respect
more fully the natural drive of the human mind and body toward
perfectibility and regeneration. Protecting and cherishing
that natural drive may well represent the finest exercise of
human freedom. (p. 167)

CHAPTER III

METHODOLOGY AND PROCEDURES

Factors Influencing the Design

The study design was influenced by the following factors:

l. The researcher’s experience in working with adults in the
areas of managing stress, coping with loss, and transition.

2. Personal expectations and criteria related to the kinds of
growth and educational experiences the researcher hoped to achieve
through this study. These expectations included (a) that the
research be a source of intimate stories reflecting people
confronted with significant life transitions; (b) that the research
involve individuals forced to face life’s transitions over a long
period of time; (c) that the research be primarily ethnographic in
nature, the desired research tools being personal interviews; and
(d) that the researcher look at the participants’ life histories
with the primary concerns focused on the relationship between one’s
illness and wellness and one’s outlook on life.

Two more factors significantly influenced the development of
this study:

l. Interviews and written communication with professionals
whose work focused on coping with chronic illness, adult transi-

tions, and loss.

41

42

2. A preliminary review of the literature.

The sequence had some variations because a number of these
steps occurred simultaneously. -

Continuing clarification of the problem areas in coping with
chronic illness and SLE was developed on a number of levels:

l. Written communications with all identifiable national,
state, local, and support organizations dealing with SLE. Appendix
J contains a list of national and state organizations contacted for
this study. Identification of local support-group involvement would
have been a breach of confidentiality and thus is not included.

2. Involvement with a graduate student research support group
that helped to focus on issues and clarify the intention of the
study. The group critiqued proposals and provided suggestions for
the refinement of these proposals.

3. Advice and guidance from members of the doctoral guidance
committee.

A review of the literature was highlighted and aided by using
the following services and technologies:

1. Direct data-bank searching on CD ROM at Jackson Conlnunity
College, Jackson, Michigan. Data banks searched were Medline and
ERIC, both produced and marketed under the trade name Silver
Platter. Descriptors used to delineate and identify appropriate
articles included lupus, SLE, chronic illness, coping, stress
management, wellness, holistic health, well-being, emotional health,
social support, adjustment, United States only, and family values.

The focus was on literature published after 1980.

43

2. On-line data-searching services at Jackson Community
College. The following data banks were used: Psychology Abstracts,
Sociological Abstracts, Books in Print, and Dissertation Abstracts.
The search was limited to those materials in print after 1970. Some
stress-related documents went back to the l9305, 19405, and T9505.
Some of the descriptors and delineators used in the data-bank
searches included chronic illness, emotional adjustment, support
groups, well-being, loss, bereavement, holistic health, coping,
adjustment, illness, stress management, and family issues.

In addition to these searching techniques, three other sources
of data were used:

1. Recommended reading lists from the National Lupus
Foundation of America.

2. Conversations with professionals relative to specific kinds
of information and their location.

3. Books in print from l970 to the present. All materials
were received through interlibrary loans and personal purchases from

various lupus-related organizations.

Interview and Data-Collection Process
The interview and data-collection processes were developed with
the following intentions:
l. As a means of complementing existing data.
2. As a mechanism to develop a triangulation of different
types of information that would create opportunities to learn about

various elements of a subject’s transitions.

44

3. As a form of cross-referencing types of changes in each
subject’s life related to transitions and loss. The criteria for
selection of the subjects required that all subjects be (a) female,
(b) positively diagnosed with SLE for 5 years or more, (c) between

20 and 55 years of age, and (d) voluntarily involved.

Quantitative Research Instruments

Three instruments were chosen to provide quantitative data from
the subjects: the Lifeline, the Life Changes Inventory, and the
Response to Loss Inventory (see Appendices A, C, and D for copies of
all the instruments.) The Life Changes Inventory and the Response
to Loss Inventory' were developed by John Schneider. The Life
Changes Inventory is comprehensive and provides for a wide variety
of questioning. The format is easy to use, clear, and complete.
Both an interpretation of the intensity of the change by the subject
and a chronology of events are included. The Lifeline is a simple
story line that duplicates the information in the Life Changes
Inventory. The Life Changes Inventory, coupled with the Lifeline,
provides a powerful tool for looking at one’s life and developing
dialogue.

The Response to Loss Inventory was chosen because it met a
number of other criteria that were helpful in the interpretation and
triangulation of the data. These criteria included the following:

1. The instrument provides a quantitative measurement of some

of the changes and life positions of the subjects.

45

2. This quantitative measure provides a form of validation for
some qualitative sources of information gained in the interviews
(see Appendix E). -

3. It helps the researcher' gain a perspective on how the
subjects are responding to the losses related to their illness.
This is especially important in understanding some of the varieties
of transitions and choices that individuals report.

4. The instrument helps the researcher understand some of the
dynamics of loss that individuals may be experiencing because
chronic illness has a great number of issues related to loss and
grieving.

These instruments were chosen for the following three reasons,
as well:

1. They provide a consistent format to review life transitions
and responses beyond the interviews.

2. They can be used to stimulate a subject’s recall vignettes.

3. The researcher had previously used all three instruments.

4. The potential to duplicate the research using these instru-

ments is very good.

anlitative Resaarch Focus
A comprehensive interview process was developed, in which the
Life Changes Inventory and the Lifeline were used to create a
consistent framework for the interviews. The use of these tools in
concert with the interviews created a fbrmat from which the

interview was developed.

46

Chronological Steps in Conducting the Research

On October 3, l990, the proposal for this study was accepted by
the researcher’s doctoral advisory committee. 'The application fOr
Human Subjects was submitted immediately thereafter. (See Appendix
K for a c0py of the Risk-to-Benefit ratio.) On October 24, l990,
the Michigan State University Committee on Research Involving Human
Subjects gave its approval to the study (see Appendix L). Also on
October 24, l990, letters expressing the researcher’s intention in
seeking subjects were sent to professional counselors, medical
personnel, support groups, and related allied health professionals
(see Appendix H). The closing date for all interviews was set at
January l, 1991. This was then extended to March 1, l99l, due to
problems completing the interviews and finding sufficient subjects
who met the guidelines. Six subjects completed the interview and
survey process. The process and procedures for identification of
subjects were as follows:

I. A letter of introduction was sent to the professionals
describing the nature of the research and the purpose of the
study (Appendix H). Copies of letters that were sent to
persons interested in participating in the study and the
informed consent forms are included in Appendices I and G,
respectively.

11. Once interest was expressed by or on the part of an
individual, a preliminary meeting was set.lu) with the

prospective subject. The purpose of the meeting was to

III.

IV.

47

provide a more complete description of the research and
procedures. Specific content included:

1. Purpose of the research

2. Overview of the types of data and research procedures:

a. Interview process, sample questions, and taping pro-
cedures

b. Survey instruments: Lifeline, Life Changes Inventory,
Response to Loss Inventory

c. Possible follow-up interview of significant others;
how and why they might be helpful

d. Any questions or concerns related to the research

e. Review of informed consent and written permission
from subject

f. Upon informed consent, a time line was developed,
with each participant outlining the various compo-
nents of the study

9. Survey instruments were given to each person

Between the first and second meetings, the two survey
instruments, the Lifeline and the Life Changes Inventory,
needed to be completed and returned. In some cases this step
was eliminated, and the Lifeline and Life Changes Inventory
were filled out before the first interviewu ‘This occurred
because the researcher found that the extra meetings were not
fulfilling a valid need.

Once these instruments were received and reviewed by the
researcher, a second interview was scheduled.

The second interview focused on understanding the chronology

of the subject’s life: what occurred, what kind of an early

VI.

VII.

VIII.

48

life she had experienced, and some of the most significant
times in her life.

The Response to Loss Inventory was also completed between the
first and second interviews. It was then reviewed by the
researcher, with additional help from John Schneider.

The third interview focused on significant transitions and
the kinds of coping strategies that were used to get through
those times. The questions focused on kinds of coping
strategies used either overtly or covertly, with or without
conscious awareness at the time. Individuals were also asked
to identify which strategies would be most beneficial to them
in the future. Some of the issues discussed included types
of experiences they had encountered in past years that caused
them to learn new coping responses and how these new
responses had changed over the years. Depending on the
length of the interview, the individual’s fatigue factor, and
personal schedule, a fourth follow-up interview was scheduled
for some subjects.

The fourth interview focused on a review of the Response to
Loss Inventory, discussion of any closing concerns, and
identification of any significant others who might be helpful
in providing perspective (”1 the subject’s approach to
transitions. If: a significant other' was identified, the
subject was then asked to sign a consent form to allow the
researcher to contact the other person. hi two cases the

interview process was condensed to a longer session. That

49

had been preceded by preliminary and follow-up phone
conversations. Also, as the researcher became'more
comfortable with the data collection, certain types of
information were found to be insignificant and later
interviews were modified.

IX. Significant others were then approached and an informed
consent form acquired from each person willing to participate
in the study.

X. Taped interviews with significant others included (a)
clarification of relationship with the subject and (b)
perceptions of the subject’s coping responses and behaviors

during and after times of transition.

Inventories and interviews were reviewed, and the results of
each interview were screened for the following types of information:

l. Types and frequencies of transitions, and narratives
describing these transitions.

2. Types and frequencies of coping responses or tools used to
cope.

3. Vignettes that reflected coping responses.

4. Triangulations that were created using survey tools and
interviews with significant others.

5. Comparison to the results from other participants related
to their coping.

6. The types of transitions that were encountered.

50

The interview responses were entered into a data bank and coded
by types of vignettes and transitions that were shared. The
researcher reviewed the data from the Life Changes Inventory and the
Response to Loss Inventory and discussed them with John Schneider
because he had developed the LCI and RTL and understood both
instruments best. Following these discussions and the review of
data, each subject’s responses were analyzed and reduced in summary
form to assist the researcher in using the data. This summary of
the data was then taken into account in developing the total data
bank and in cataloging. Once the information was catalogued and
organized, the process of clarifying major assertions to be drawn
from the data was initiated. The researcher and John Schneider met
twice to review the data. The focus of the conversations was on
those statements in which there were significant levels of agreement
and disagreement.

The RTL results were summarized in three ways. Areas of high
agreement were summarized in individual statements. Areas of
absolute disagreement were summarized. Next, areas of absolute
unimportance were examined. These statements were then compared

with the frequencies found in the interviews.

Summary

Six primary subjects were interviewed for this study; the
interviews lasted a total of 35.5 hours. Four secondary interviews
were conducted with significant others, lasting a total of 6 hours.

In addition to the six subjects who completed the study, one person

 

51

completed about 80% of the process and then withdrew from the study.
Three others volunteered to participate but did not meet the
criteria. Of the total number of people who volunteered for the
study, five were part of the regional support group for SLE and
discoid lupus patients, three were referred by counseling
professionals, and two were referred by medical personnel who were

aware of the research.

 

CHAPTER IV
ANALYSIS OF THE DATA

Introduction

Illness, tragedy, joy, and pain are all elements of life. The
question is not whether transitions will occur, but rather how we
choose to deal with these transitions, specifically, chronic
illness. What promotes well-being in times of illness? What
learnings are gained from the presence of chronic illness in one’s
life? The data in this chapter present the reflections of the six
subjects as they relate to SLE.

This chapter is organized in the following manner. The first
section includes a profile on each of the subjects. The second
section includes a summary of data gathered from the Response to
Loss Inventory. The third section includes an identification and
considerations of various assertions. Section three has two parts:
(a) a look. at the initial assertions as identified through the
preliminary research proposal and (b) an identification of a number

of additional assertions that evolved from the data.

Profiles of the Subjects
This section contains a brief profile on each of the six

subjects who participated in the study.

52

53

Marilyn

Marilyn was young and searching, yet she had a depth of

sensitivity about her that was way beyond her years. She was

seeking a role as a helping professional and had begun the long

journey. She was a 20-year-old student who had been diagnosed with

SLE for six years. Her illness had been a significant part of her

life in many ways. Developmentally, she was the youngest subject.

She was a friendly, outgoing individual who looked the picture of

health. (See Table l for Marilyn’s subject profile.) (For a

description of the subject profile informational breakdown, see

Appendix L.)

 

Table l.--Summary of individual subject profile data: Marilyn.
Subject Marilyn
Age 20
Gender Female
Current marital status Single
Marriages None
Divorce None
Children--natural None
Children--adopted None
Miscarriages None
Years diagnosed Six
Years with possible symptoms before diagnosis Five

Organ involvement

Joint pain

Fatigue

Allergies

Possible hereditary

Relationship

Medications

Past or present involvement in support group
Has had or was referred to counseling

Lung, central
nervous system
Yes

Yes

Yes

Yes

Mother

Yes

Yes

Yes

 

 

 

Ung

”De.

 

54

Marilyn was raised in a traditional family. Both her parents
were working at the time of the study. The presence of her mother’s
chronic illness was a part of her earliest memories. When Marilyn
was three, her mother was hospitalized, and the child stayed with an
aunt for a short while. When Marilyn was eight, her mother had a
recurrence and was wheelchair-bound for almost three years.
Gradually she regained her ability to walk, and when Marilyn was ll
her mother started to walk with a walker. Her mother demonstrated a
great deal of courage and spirit in her own journey and was a real
caretaker. She currently was managing her own business and was in
remission. Marilyn’s father had been very supportive to both
Marilyn and her mother throughout this time. Other family members
had also been significantly supportive during this time.
Grandparents and aunts and uncles had been very helpful.
Grandmothers, specifically, continued to be supportive.

Music was a part of Marilyn’s early life, and at age seven she
began to play the piano. By age 13, she was burned out from piano
and tried to play the clarinet in the school band. That did not
last long. She quit when she was 14. Music continued to be an
important part of her life at the time of the study. She still
liked to play, but at times the joint pain got in the way. Before
age 12, Marilyn liked to play sports with family members and was
fairly active.

Illness in Marilyn’s own life became more evident with the
onset of puberty. At age ten, she missed a lot of school because of

unexplained illnesses. At age 12, she had very severe allergic

55

responses; that same year, her grandfather died. He was a special
person in her life. At age 13, she missed a great deal of school,
was sent to a rheumatologist, and was diagnosed as having arthritis.

This period was followed by a severe depression, and Marilyn
was referred to a psychologist. This was followed by a diagnosis of
lupus when she was 14. This was a particularly difficult time in
that she was started on steroid therapy, had a breast tumor removed,
and lost many friendships. Life was very difficult. Marilyn’s
grades fell, and she was hospitalized for an extended period of
time. By then, she was 16 years old, and because of her physical
condition she was placed in a class for youths with impaired health.
Three positive things occurred at this time: (a) Marilyn became
friends with a physical therapist who was very concerned and caring,
(b) her mother went into remission and started walking well, and (c)
she officially started to drive.

When Marilyn was 16, she had her first summer job, helped in
her mother’s business, and went on an extended trip. Half way
through the year she had a flare-up of her lupus, was put on new
medications, and was hospitalized. This pattern recurred throughout
the following year, and at the end of her seventeenth year she was
bedridden for a month. The positive parts of the year were that she
purchased her first car and enrolled in a cadet teachers program.
The year closed on a good note: She started to feel better. It
seems that this pattern of January flare-ups had been consistent for

the last three years.

56

Marilyn graduated from high school and enrolled at a local two-
year institution. She also began an exercise program and found this
to be helpful. She had a severe weight gain of 30 pounds right
around the end of her eighteenth year but lost all 30 pounds by the
middle of her nineteenth year» She also had seizures that began
around this time and was diagnosed as having some central nervous
system involvement. She had three good terms at school but had to
maintain a limited schedule. Her goal of nursing was also
clarified.

At age 20, Marilyn was continuing to take classes, seemed to
think there was a good prognosis, and was involved in a lupus mutual
support group that was helping a great deal. She was also looking
for work. Her goal was to continue to build her endurance and
strengthen herself. She still had recurring flare-ups that lasted
anywhere from a day or two to a month, and this kept the presence of
the illness in her life very great. She regulated her own
medications and was seeking a new physician because she was not
comfortable with the kind of care she was receiving. She had a good

sense of her rights as a person, as well as her needs.

gang

Anne was a pleasant 29-year-old mother of two. She had been
married for more than 12 years. She was diagnosed with lupus nine
years ago. Her first child was born naturally, and her second was
adopted. Her 10-year-old son had had one positive and one negative

test for lupus. Anne’s mother also had lupus and had been diagnosed

57

for more than 20 years. Anne expressed many fears and concerns due
to the severity of her mother’s chronic illness but did not dwell on
it, nor did she share that it was an all-consuming part of her
childhood. Anne was married to a very supportive husband. She had
a great deal of family support and lived in a loving environment.

(See Table 2 for Anne’s subject profile.)

Table 2.--Summary of individual subject profile data: Anne.

 

Subject Anne
Age 29
Gender Female
Marriages Married
Number of marriages None
Divorce None
Children--natural One
Children--adopted One
Miscarriages One
Years diagnosed Nine
Years with possible symptoms before diagnosis Eight
Organ involvement Lung
Joint pain Yes
Fatigue Yes
Allergies Yes
Possible hereditary Yes
Relationship Mother, child
Medications Yes
Past or present involvement in support group Yes

Has had or was referred to counseling Yes

 

Anne was born in a farming community

continued to live in that same community.

many allergies. These included milk and eggs, to name just two.
With these allergies, she had a great deal of mucous.

to these issues of early infancy, she had eczema on her face and

As an infant,

in the Midwest and

she had

In addition

58

ears, which caused oozing. At six months, Anne had bursitis in her
shoulder and could not move her arm away from her body. Later in
childhood she developed asthma and lung problems. 'The lung
involvement was significantly affected by her lupus. To complicate
matters, she was vaccinated for measles, and due to her
hypersensitivity, she contracted the disease. The illness caused a
very high fever for more than a week. The doctor said that she was
fortunate because if she had contracted a full-blown case of measles
she would have had serious effects.

This sensitivity continued on throughout her life. In the
first half of the 1971-72 school year, Anne missed 48 days of
school. She had to go home every day about 10 a.m. because she felt
unwell. Doctors said it seemed like morning sickness, but that was
not even a remote possibility. In January of that same school year,
she had exploratory surgery; an irregular appendix was revealed.
Due to Anne’s sensitivity, the surgeon let her go home early becuase
they could not give her anything for' pain without incurring a
reaction.

In 1974, Anne twisted her knee. She also blacked out and fell
while working outside with her father. This was only the beginning
of' several strange things that happened ‘throughout her; maturing
years. She was always sensitive to the sun. Often, when riding a
bicycle, she would go fast in the sun and slow in the shade, just to
protect herself.

In her teenage years, Anne began feeling short of breath and

would have to go to the emergency room for help and oxygen. It was

59

always the same scenario: gasping for breath, as if her lungs were
fatigued and in need of rest. During the following six years, Anne
was sent to all kinds of doctors for a multitude of tests. This was
not before she had been recommended to a psychologist for counseling
because her regular doctors and a specialist could not detect a
specific cause for her illness. She said that, at that point, she
was really beginning to doubt that there was anything there.
Finally, a doctor told her what had been going on even before he
finished listing her symptoms. What is ironic is that Anne’s mother
had had lupus for years. The possibility of Anne’s having it was
ruled out, so the doctors never made a connection in spite of all
her history and symptoms.

One month after giving birth to her child, Anne became
extremely ill. Her hair was falling out, her face became splotchy
red, and she lost a lot of weight. This was a portent of things to
come. She had a number of flare-ups since then. (hi December 31,
1984, Anne went riding on a three-wheel motorcycle and had a
wonderful time. The next day, she was exhausted physically; her
body was so fatigued that she could do nothing but lie there. Just
breathing was tough. After another flare-up, Anne lost 25 pounds
and became extremely skinny and shaky. She was so frail she could
barely hold herself up for any length of time. At the time of the
study, due to her lung involvement, she still could not suck a
milkshake through a straw or bite a whole apple without having it

cut up. That is just part of where she was in her life at the time.

 

60

In those times of flare-ups, Anne said she was so weak that she
spent a month at a time in bed. She was so overcome with weakness
that she could barely care for herself. Even in less difficult
flare-ups, it was difficult to plan even one event a week, such as
going shopping, because she was so weak.

Beyond these physical concerns, Anne had to overcome a number
of fears related to illness and life. There were times when she was
so withdrawn and depressed that venturing out and confronting people
on a daily basis was difficult. These fears, she said, had been the
most difficult part of her journey.

At the time of the study, she could maintain a normal schedule
as long as she listened to her body and did not overdo things. If a
week became too filled with stressful activities and
responsibilities, she canceled everything that was not necessary, to
protect her body and preserve her energy. Evenings were usually the
most difficult.

A year before being interviewed for this study, Anne and her
husband adopted an infant. Her primary focus was on maintaining
balance in her life in as many ways as possible. She had an
extremely clear sense of priorities. These lay with her life and
family. She paid special attention to her diet, which included
vitamin supplements. She also included some regular, moderate
exercise and had positive outlets. Learning had become a key focus
in her life. Anne also had a wonderful sense of spirituality that

was very apparent.

61

Beth

Beth was 35 years old. She had been married twice and divorced

once. She had three children, one from her first marriage and two

from her second marriage. She had been diagnosed with lupus eight

years before the study. Both of her parents were blue-collar

workers. Little outward affection had been shown toward Beth as she

grew up. (See Table 3 for Beth’s subject profile.)

 

Table 3.--Summary of individual subject profile data: Beth.
Subject Beth
Age 35
Gender Female
Current marital status Married
Marriages Two
Divorce One
Children--natural Three
Children--adopted None
Miscarriages None
Years diagnosed 11
Years with possible symptoms before diagnosis 12
Organ involvement None
Joint pain Yes
Fatigue Yes
Allergies Yes
Possible hereditary Yes
Relationship Grandfather,
cousin
Medications Yes
Past or present involvement in support group No
Has had or was referred to counseling No

 

As a child, Beth was given piano, flute,

skating lessons; she was also in the choir.

voice, ballet, and

She had a great deal of

talent and was very bright. Her parents wanted everything for her

62

that they had not had. Beth shared that she seemed to grow up
without a sense of what she wanted for herself. _

Beth was very allergic to a number of things as a child and had
various unexplained illnesses throughout her youth. She had her
tonsils removed when she was about seven. She said she had a tough
time adjusting to junior high school. She was raped when she was
15. At age 16, she traveled to Europe as part of a touring singing
group. About that same time, she had an appendectomy. At the age
of 17, Beth again had her tonsils removed.

Beth graduated from high school when she was 18 and entered
college as an English major. She graduated at the age of 22, and
some time during that period she aborted a baby.

She was married at the age of 23, and her first child was born
when she was 28. Her marriage was rocky; the relationship
encountered a great deal of conflict in the early years. Later on,
Beth was betrayed and tried to reconcile the relationship, to no
avail.

That period became a major turning point in her life. She
realized that she hated her marital situation, and at the same time
she was pregnant. In an attempt to lash back at her husband, Beth
scheduled herself for an abortion. Just before the abortion,
however, she decided that what she really wanted was the child; it
was the marriage she did not want. Beth was divorced shortly after
her first child’s birth.

Beth said that once the child was born, she learned the most

profound lesson of her life. She could be loved unconditionally by

63

someone, her child. It was through the unconditional love of her
child that she eventually learned to love herself. During' that
time, she was diagnosed as having lupus. The road to diagnosis was
a difficult one. She had many illnesses during that time that were
hard to understand. Their origin was difficult, if not impossible,
to pinpoint.

This created significant changes in Beth’s life. She had a
great deal of pain. Finances changed for the worse, and life was
difficult. For a brief, two-year period she moved out of her native
state. It was at that time that she lost her job and eventually had
to move in with her parents until life could become stable after the
divorce. She shared that life was difficult, but once she became
adjusted to her new roles she enjoyed her freedom and living
independently.

She remarried when she was 32. The person she married was an
old friend she had known before her first marriage. Life became
more stable in a number of ways. During the past year, she became
the mother of twins. She worked as a clerk, a job for which she was
not educated. She did not feel challenged or stimulated in her work
but thought that was all right. She said the hours and benefits
were good; she did not have to overextend herself physically. She
shared that this had been one of the adjustments she had made since
her lupus. She experienced a great deal of fatigue in the evenings
and had to guard her time. She had a much clearer sense of

priorities and felt good in her new role.

54

Geraldine

Geraldine was a 37-year-old single mother of an 11-year-old
boy. She had been raised in a rural community in a traditional farm
family setting. Geraldine was the oldest of three children; she had
a brother and a sister. Her parents were farmers and lived a
conservative life. Her father was hard-working and dominant; her
mother was conservative and very traditional. Geraldine’s
perceptions of her family were that they were loving and that her
home environment was secure and basically positive. She had had
systemic lupus for at least 11 years. She had two miscarriages in
the early 19805, at which time her lupus manifested itselfl Her
involvement with SLE was mild but chronic and controlling. (See
Table 4 for Geraldine’s subject profile.)

Geraldine was on daily pain medications, had some joint
involvement, and was confronted with fatigue daily. She also had
skin rashes that had been especially bad when she was growing up.
Seventh grade was a particularly difficult time. Schoolmates were
nasty and teased her mercilessly about her skin. This continued for
about a year, until someone else came along with a worse problem and
the teasing was transferred to that child. High school and growing
up was a lonely time. Geraldine lived on a farm and did not have
any close friends during that time. She did not participate in any
outside-school activities. Her life revolved around reading and her
farm chores. Reading continued to be a favorite pastime at the time

of this study.

65

Table 4.--Summary of individual subject profile data: Geraldine.

 

Subject Geraldine

Age 37

Gender Female

Current marital status Single: live-
in partner/
fiance

Marriages Two

Divorce Two

Children--natural One

Children-~adopted None

Miscarriages Two

Years diagnosed Eight

Years with possible symptoms before diagnosis Eight

Organ involvement No

Joint pain Yes

Fatigue Yes

Allergies Yes

Possible hereditary Yes

Relationship Mother,
grandmother

Medications Yes

Past or present involvement in support group Yes

Has had or was referred to counseling Yes

 

At age 18, Geraldine graduated from high school, got her first
job, was fired, and met the man she would marry three years later.
Somewhere during that time she had two abortions. She was married
at 21 and was divorced 14 months later. Geraldine met her second
husband when she was 22 and was married two years later. She became
pregnant and had a child at age 25. Her husband was not ready for
children, and the burden of raising the child was hers.
Subsequently, she had two miscarriages when she was 28 and 29. At
that time, her lupus began to flare up, and the limitations of her

illness became more apparent.

66

At age 30, Geraldine moved to the country. At 32 she caught
her husband having an affair and sought a divorce. She also bought
a horse, and horseback riding became a favorite pastime.

At the time of this study, Geraldine was living with a man she
expected to marry. She had always dealt with difficult times by
accepting her pain and discomfort and by withdrawal. Her hobbies
included horseback riding, needlepoint, and reading, especially
historical romance novels. The model who had influenced her the
most was her mother. She believed the woman’s role was to serve the
man, be obedient, and attend to her own needs last. Not until her
divorce four years before had she begun to question her role as a
parent and spouse. The most significant changes in her life in the
last four years had been a gradual evolution of her self-concept and
a realization of her personal needs for expression and her ability
to express those needs. Through mutual support and counseling, she
had begun to clarify her rights, her needs, and her role as a person

and a parent.

Sarah

 

Sarah was jovial and sensitive and a caretaker of the heart.
She had a wonderful sense of her priorities and understood her
message of sharing and loving those with whom she came into contact.
She was absolutely committed to helping and supporting others. (See

Table 5 for Sarah’s subject profile.)

67

Table 5.--Summary of individual subject profile data: Sarah.

 

Subject Sarah
Age 48
Gender Female
Current marital status Married
Marriages One
Divorce None
Children--natural Two
Children--adopted None
Miscarriages None
Years diagnosed Eight
Years with possible symptoms before diagnosis Four
Organ involvement Muscular pain
Joint pain Yes
Fatigue Yes
Allergies Yes
Possible hereditary No
Relationship None
Medications Yes
Past or present involvement in support group Yes

Has had or was referred to counseling Yes

 

Sarah, a 48-year-old woman, had been diagnosed with lupus eight
years earlier. She was born in a large midwestern city. Her
parents’ formal education was limited; they had married when Sarah’s
mother was only 14 years old. Her mother was a positive influence
in Sarah’s life. Sarah shared that it was her unconditional love
that provided her with a sense of who she was. Her father was very
moody, had a chronic ulcer, and ultimately became an alcoholic. His
presence in Sarah’s life was a very negative one, for her father was
the one she most wanted to please but she could not please him. He
was the origin of a great deal of pain for her all the way into her

early married life.

68

When she was ten, Sarah’s family moved to the suburbs, and
Sarah felt alienated. She gained weight. When she was 14‘, her
father had corrective surgery for his ulcer, and this seemed to
alleviate the problem; but alcohol became a bigger concern. Sarah
very much wanted to please her father, and this was a constant
source of pain for her. Eventually, he became a chronic user of
alcohol. By the time Sarah was 15, her father was drinking heavily.
There was a lot of tension in the house. From about age 15 to 17,
Sarah’s father did not speak to her because of her choice of
boyfriend. The family was very much on edge as a result of her
father’s behavior.

At 18, Sarah graduated from high school but did not receive
support to attend college, even though other family members had done
so. At the age of 19, she was working as a data-processing clerk in
a company and was becoming fairly independent. It was then she met
her future husband. After three dates, he asked her to marry him.
Four months later they were married; Sarah was pregnant. Both Sarah
and her husband worked. Her father continued to drink chronically.
By the time Sarah was 21, her first born had arrived. She stayed
home for nine months and took care of her son. Her mother cared for
him after Sarah returned to work. Leaving to go to work was
difficult because of her commitment to her child.

At age 22, Sarah had her second son. Marital problems were
beginning; her husband was becoming a chronic user of alcohol.

Sarah experienced two miscarriages. At age 24 she was experiencing

69

severe headaches, she slept a lot, the marriage was becoming
difficult, and she was feeling isolated due to a move to a smaller
town. Their life continued. At age 27, Sarah had a daughter. The
marriage improved, even though her husband was still drinking and
his dislike of his work was becoming a problem. Sarah was doing
free-lance work, but their social life was very limited and she was
isolated.

At age 28, Sarah began doing data entry at a university. She
made many nice friends. Her husband was drinking heavily at the
time. Sarah came to the realization that anyone could go to college
if they had the money and were willing to work. Her self-esteem was
still low. "I don’t feel very smart, but I do know how to work,"
she commented. She took an inventory of her life and her marriage
and decided to register for college. That was a major turning point
in her life. She was scared to death; as she said, "I didn’t even
know the language around education.

At age 29, Sarah finally come to grips with her relationship
with her father. She identified that she was not responsible for
his behavior. College began. Her husband was distanced and
threatened by her attending school. Things did not look good.
"I’ll finish school, become a professional, and it can either help
the relationship and me financially or it can be my way out," she
said. By age 30, life and school were going well, and Sarah’s
attitude was one of commitment to the children and school. Her

husband was still drinking a great deal, but "that’s his problem,"

70

she realized. She loved school and was having a very successful
experience. _

When she was 30, Sarah discovered that her husband was having
an extramarital affair. She shared that she had never felt so hurt.
After a brief separation and a great deal of talking, Sarah and her
husband decided to give their relationship a second chance. He
began going to Alcoholics Anonymous, and she decided to drop out of
school and focus her energies on the relationship. The marriage got
stronger; life was good. Her husband decided to return to school.
He quit his job, they sold the house and one car, and they moved
into student housing. Their' roles changed. Sarah became the
provider, and her husband became the househusband. This entailed a
lot of hard work. Life went on. A brother was divorced. A child
had two minor surgeries and later was hit by a car; he was in a coma
for three days.

At age 35, Sarah worked as an assistant manager of a
restaurant, 60 to 70 hours a week. She was fired without
explanation. She had a terrible upper-respiratory infection and was
very sick for five days; they had no money. Finally, she had to go
to the emergency room with a temperature of 1050 F3 This was her
perception of the beginning of her lupus. Her husband began
drinking again, and she was devastated.

When Sarah was 36, a number of transitions occurred. Her
husband graduated and was doing his internship in another town. Her
son was caught doing drugs and was later arrested for breaking and

entering. Sarah’s mother decided at that time to separate from her

71

father. Sarah’s father had a heart attack and died before her
mother could tell him. Her husband came home on a weekend drunk and
hating his job. Sarah was helpless and, in desperation, left the
house frustrated and angry. She was driving in the country and
crying uncontrollably. She screamed in a plea of helplessness:
"Oh, God, help me." She said she was immediately overcome with a
sense of peace. Life began to change. Christ became the focus of
her life.

At 37, Sarah’s life was a constant roller-coaster. Her son was
heavily into drugs. Her husband was in denial with his drinking
problem and working 70 hours a week. Chaos surrounded her. She was
a prisoner in her own home.

When she was 40, the realities of lupus were realized, and
Sarah was diagnosed. After six months of grieving, her realization
of life was reborn. "I decided dying is easy; while I have life,
I’m going to live it." Her son left home at about this time--"tough
love." Her husband came to the realization that Sarah could die at
any time. He started attending church with Sarah and their
daughter.

Between ages 40 and 45, a number of things happened. A niece
was killed in an accident. Sarah’s daughter was dating seriously.
Her son, who had been forced to move out of the house, entered
college, became a Christian, and married. Sarah went back to work.
Her husband was searching spiritually. She returned to school. Her

daughter-in-law was hit by lightning and by a train. Her son and

72

daughter-in-law’s house was burglarized. She learned that a cousin
was dying of AIDS.

When Sarah was 46, her son was in an automobile accident in
which one person was killed; alcohol was involved. Her son then
moved back home. Sarah’s husband converted to Christianity. That
same year, their daughter broke up with her boyfriend of five years.
Life went on.

Sarah categorized her life with her husband at the time of the
study as follows: "He is my best friend, he is my love, he is
everything!" About her children she said, "I do not have to like
what they do, nor do I have to accept it, but they know I will

always love them no matter what."

Meg.

Teresa, age 51, was married and had two adult children. Her
daughter had lupus, and her daughter’s son was also diagnosed with
possible SLE. He had one positive test for lupus. Teresa had been
diagnosed with lupus 20 years ago, after almost 20 years of ill—
defined symptoms and illnesses. She had been raised in a rural
environment and lived on a farm. (See Table 6 for Teresa’s subject
profile.)

Teresa’s first symptoms occurred at the age of 10. After
sledding one afternoon, she began running a low-grade fever. She
had swollen joints and pain. The skin on her legs was mottled.
This was the beginning- of a lifelong series of ill-defined

illnesses. Initially, 'these illnesses would cause her to Iniss

73

school up to six weeks at a time. Doctors could not find a cause.

At age 12, she had her tonsils taken out by electric needle because

she was such a heavy bleeder. At 14 years of age,

she had her

appendix out and almost died. She had to have a second surgery and

was found to be bleeding internally. She had an incision from hip

to hip and had to be transfused. Her blood type at that time was RH

negative. This later proved to be very puzzling to her doctors

because, after the birth of her first son, she was found to be RH

positive.

 

Table 6.--Summary of individual subject profile data: Teresa.
Subject Teresa
Age 51
Gender Female
Current marital status Married
Marriages One
Divorce None
Children-~natural Two
Children--adopted None
Miscarriages Two
Years diagnosed 20
Years with possible symptoms before diagnosis 20
Organ involvement Heart
Joint pain Yes
Fatigue Yes
Allergies Yes
Possible hereditary Yes
Relationship Daughter,
grandson
Medications Yes-
Past or present involvement in support group Yes
Has had or was referred to counseling Yes

 

In January of that year, when Teresa was 16, her father died.

The next month, she was taken to Ann Arbor for thyroid surgery.

74

Graves disease was the diagnosis. Her eyes bulged, and her throat
was enlarged. She was in surgery for eight hours. The gland was
large, hard, and wrapped around the windpipe. It had feelers down
into her chest. At the time, the doctors thought it was malignant,
but it was later found to be benign. Right after surgery, Teresa
had what was labeled a thyroid storm; she almost died. This, too,
was a rare occurrence. She shared that the doctors would not let
her mother leave the hospital for three days because Teresa was so
close to death. At age 18, she had damage to the mitral valve of
her heart and was diagnosed as having rheumatic fever.

Shortly thereafter, Teresa was married. About a year later she
had a miscarriage after carrying the fetus for about six weeks. At
19 she gave birth to her son, who was a normal weight. She had
carried him for almost 11 months. Doctors tried everything, from
inducing vomiting several times, to castor oil, to jumping off
chairs; nothing worked. The baby was born in his own time. He was
bluish and shriveled but normal. Teresa’s heart problems were
manifested again, and she was put on digitalis. Her blood was now
retyped as RH positive. To say the least, her doctors were puzzled.

At the age of 20, Teresa again became pregnant; she started
spotting at about three months. At six months she began
hemorrhaging, and the baby was stillborn. A year later, Teresa gave
birth to her' daughter. 'The baby’s birth weight--9 pounds, 13
ounces--was slightly above normal. She carried this baby almost 11

months, as well. At age 22, Teresa had a flare-up of her thyroid,

75

and her heart rate became very rapid. She was ultimately treated in
a major hospital and given radioactive iodine. She had a monstrous
dose of almost 14 rads. Teresa was very weak for a long time.

At age 23, despite fears she had become sterile from the.
radioactive iodine, Teresa became pregnant with twins. They were
born two months prematurely, and both died a short time afterwards;
their lungs were not fully developed. Teresa, also, almost died
after her Caesarean section broke loose. She spent two months in
the hospital recuperating.

Teresa described the next eight or ten years as relatively free
of incidents. The exception was that she had significant allergies.
Bee stings were especially frightening. She also started to develop
reactions to the sun and did not realize the cause. She would
collapse and get very weak, similar to heat stroke. She also would
develop a butterfly rash that was never diagnosed. She was fine one
moment, and the next she could be in turmoil. She would get
terrible headaches and run a high temperature or even collapse.
Illness was very present, but in comparison to the past she was
doing better.

When Teresa was about 30, she began passing out from heart
fibrillations. Her heart would stop beating for a few seconds at a
time. She was then put on pronestyl. For a while, things went
pretty well. She said she could bale and haul hay, do other work on
the farm, and take care of the family. She also baby sat and cared
for her sick mother. She was a real caretaker and did so for

everyone but herself.

76

At age 32, Teresa had been working on the farm and had had a
busy day. That night, at about 3:00 a.m., she got to the bathroom
and passed out on the floor. She was in so much pain that it hurt
for her husband to carry her to the couch. She was extremely ill
and nauseated; her heart was still fibrillating. She was sent to
the intensive care unit by her family doctor. After all this, a
check was made for lupus cells, and Teresa was diagnosed as having
lupus as well as heart-related complications. She was put on
coumadin but could not be given enough to thin the blood. There
were many ups and downs. It seemed as though she was hospitalized
about every six weeks with heart-related problems.

Upon returning home from a short trip, Teresa stepped out of
her pick-up truck and slipped on the pavement, breaking her ankle in
three» places. Because of the potential for complications, the
doctor chose to set the ankle and put it. hi a cast, even though
surgery was warranted. Teresa was told that she would never walk
again, but the doctors were wrong. She was checked to see whether
the pronestyl was a cause of her lupus, but that was not the case.

To make matters worse, Teresa’s husband had two back surgeries
and his plant was closed. Their income was limited, and life became
tougher still. She said there was a lot of stress during that time.
"Even though these were tough years, they were important years. We
all bonded together and rolled with the flow." She even made most
of the children’s clothes. It was then she dreamed that she would

make her daughter’s wedding dress. That dream was later fulfilled.

 

77

At age 43, after lying in intensive care, Teresa dreamed of
reaffirming her’ wedding vows on their twenty-fifth anniversary.
This eventually occurred, with their family at hand, their original
best man and maid of honor, and their grandchildren all in
attendance. Just after that, Teresa had a terrible reaction to her
medications and even some common foods like carrots. She said that,
because of her extreme sensitivity, she even had trouble finding a
dentist who would treat her.

Teresa’s last hospital visit was two years before the
interview, at age 49, when she had her second myocardial infarction.
Her internist and five doctors all were unsure what to do for her.
She needed a heart catheterization and a balloon, but the doctors
decided she was not a candidate because of her vasculitis. She said
that this had been initiated when she brought a baby calf into the
barn out of a terrible blustery snowstorm and pulled muscles in her
chest loose and also tore the pericardium. In addition to having a
heart attack, her lupus flared up. After two and a half weeks in
the hospital, Teresa had a spec thallium, rest, and a lot of tender
loving care. She returned home for more rest. Her mother-in-law
stayed and cared for her; she was so weak she could not even raise
her arms. She had to take baby steps and had no breath to sing in
church. Now, after two years, she could drive and do almost
anything. She wanted to travel in Michigan and nearby states with
her husband. She did some square dancing and enjoyed life and her
family to the fullest. She said that, after the last visit to the

hospital, she got her priorities in order. She cared for herself

78

much more, which she said she had never taken the time to do before.
She said that she could see how this let her love others even more.
She took vitamins and did a great deal of self-care.

Teresa said,

I feel I have come a long way on my journey through life and
that I can see God’s purpose in my whole life. There was a
time just after the second myocardial infarction that my son
and daughter-in-law moved in to help.

She continued:

I was so bad that they even had to feed me, and it hurt to hold
my six-pound grandson in my arms. I feel that this was a
turning point for me in my health. It gave me a different
outlook and much more to fight for.

She put it this way:
I think life is great and what you make of it. I also must say
I would not have gotten this far without my husband’s sense of

humor and a family that has loved me all these years. It has
brought me through many a bad day.

Summary of the individualaprofile data. Table 7 is a composite

 

of the data for each subject, as reported in the preceding pages.
From this table, the reader can gain a sense of the kinds of
individual similarities and diversities each subject brought to the

study.

 

79

Table 7.--Summary of individual subject profile data.

 

 

 

Subject
Characteristic
l 2 3 4 5 6

Age 20 29 35 37 48 51
Gender F F F F F F
Current marital status 5 M M S M M
Marriage(s) 0 l 2 2 1 l
Divorce(s) 0 0 l 2 O 0
Children--natura1 0 l 3 l 2 2
Children-~adopted 0 l 0 0 0 0
Miscarriage(s) 0 0 0 2 0 2
Years diagnosed 9 9 11 8 8 20
Years with possible

symptoms before diagnosis 5 8 12 8 4 20
Organ involvement CNS/ Lung None None Musc. Heart

Lung Pain

Joint pain Yes Yes Yes Yes Yes Yes
Fatigue Yes Yes Yes Yes Yes Yes
Allergies Yes Yes Yes Yes Yes Yes
Possible hereditary Yes Yes Yes No No Yes
Medications Yes Yes Yes Yes Yes Yes
Relationship a b c d e f
Involvement in support

group Yes Yes No No No Yes
Have had or were referred

to counseling Yes Yes Yes Yes Yes Yes

 

Key: 1
6

Teresa

Current marital status:

Organ involvement: CNS = central nervous system

S:

single, M =

married

Marilyn, 2 = Anne, 3 = Beth, 4 = Geraldine, 5 = Sarah,

Relationship: a = mother, b = mother, child, c = grandfather,
cousin, d = Mother, grandmother, e = None, f = daughter,

grandson

80

The Response to Loss Inventory

The primary focus of this section is to summarize the informa-
tion gathered with the Response to Loss Inventory (RTL). The high-
est level of agreement with a statement on the inventory represents
an individual score of 5 on the inventory. This indicates the
subject definitely thought the statement was true about her current
responses to her losses related to lupus. For the group, the range
of composite points could be from 30 to 0. A composite score of 30
reflects perfect agreement among all subjects with these statements.
A composite score of 28 to 29 would represent a composite score in
which there are more 5’s than 4’5. A composite score of 25 to 27
would reflect a scoring of greater than 4 but less than 5 and that
there were more 4’s than 5’5. A score of 4 represents that the
statement is true most of the time about the subject’s responses to
this loss. A composite of 24 would represent group agreement with
these statements at a 4 level. A score of 3 represents that this is
true some of the time and reflects a composite score of 18. A score
of' 2 represents that this is true occasionally and reflects a
composite score of 12. A score of 1 reflects that this is not true
about the subject’s current loss and would have a composite score of
6. A score of 0 indicates that the statement is true about her but

not as a response to the loss.

Highest Level of Agreement
The following statements reflect perfect positive agreement
by all six subjects. Each person responded with a 5. The group

composite score was 30 on these statements. These statements

81

reflect perfect agreement in each subject’s response patterns and
with each other as it relates to the various stages of loss as
identified in this inventory to their illness. An asterisk
indicates the statement is of a spiritual nature, as defined by John

Schneider, author of the inventory.

Perspective
In the time since this loss:
There is at least one person I can count on for support.
I’ve found ways to enjoy myself.
I can think about other things than this loss.

*What I have left in my life is enough to keep me going.

In light of this loss:

My feelings make sense when I think about them.
I am able to express my feelings about the loss.
I have already passed the lowest point.

It feels good to be able to laugh again.

No one is really to blame for what happened.
*I’ve decided to go on living.

*There are quiet places in my life now.

All of the above statements concerning perspective reflected
perfect agreement by the subjects. These statements reflected
learning and insights gained since the illness and demonstrated
healthy attitudes. Based on the perfect agreement with these
statements, it can be said that the six subjects each had support,

had learned to enjoy life, all liked to laugh, believed that they

82

had passed through the worst of their illness, and had the ability

to express their feelings about their loss.

Integrating the Loss
Im_tma time since this loss:
I’ve experienced this loss in ways that were healing.
I’ve had many feelings.
I like being with people.
I can make sense out of the messages from my body.
It’s time for me to get on with my life.

Life is worth living again.

In terms of integrating the loss into their lives, the subjects
shared that they had been able to see experiences from the loss that
were healthy, they were able to enjoy other people, and they were
able to be sensitive to their bodies’ messages. They also agreed
that their own lives had value and with the importance of getting on

with their lives.

Self-Empowerment (Reformulation)
As a result of this loss:
I am not as hard on myself when I make mistakes.
I don’t avoid admitting what I feel.

*I’ve discovered that there is more to me than what meets the
eye.

I don’t have to have all the answers for why I am alive.
My life has times of joy.

I know that things in my life can change and life can still be
meaningful.

83

Relative to the issue of self-empowerment, the group showed
that they could still have a meaningful life, despite. the
limitations of their illness, that they were not as hard on
themselves, and that they understood a depth about themselves that

they had not known before their illnesses.

Holding On
Because of this loss:

*I won’t give up.

The preceding statement was the only holding-on issue with
which each of the subjects indicated perfect positive agreement.

Each person was unwilling to give up.

High Agreement

The following statements reflect an extremely high sense of
positive agreement by the subjects. The group composite scores were
in the range of 28 to 29 points. These numbers reflect a stronger
presence of 5’5, with one or two participants giving a score of 4.
In contrast to the preceding section, there was very high agreement
of belief in these statements, but not perfect agreement. This may
reflect a number of factors, the most significant of which might be
developmental in nature. These developmental issues may be related
primarily to maturation and be categorized as physical, emotional,
or intellectual. Many of the statements on which there was not
perfect agreement came from those subjects at either end of the age

spectrum.

84

Perspective

In light of this loss:

*My past will always be a part of me.

*A part of me will always be connected to what/who I lost.

Both of these statements reflect strong elements of acceptance

relative to the subjects’ illnesses and transitions.

Integrating the Loss

In light of this loss:

My life has more to it.

I
I

know my life is important.

have as good an understanding as I can right now.

Putting my thoughts into words has helped me recover.

In the time since this loss:

I,

I
I
I

ve found effective ways to express my feelings.
relax.

don’t neglect my body.

sleep well.

eat sensibly.

I feel better.

I take care of the way I look.

I feel confident enough in myself to move on to other things.
I am finding ways to fit this experience into the rest of my
life.

I’ve restored or regained part of what I had lost.

 

85

The majority of the subjects reflected issues of how they had
come to integrate their losses in positive ways. In the statements
related to "in the time since the loss," the group had a very high
level of consensus about their own self-care. They found time to
relax and to take care of their bodies. They slept well, ate
sensibly, and generally felt better. These are all attributes of a

well-oriented person.

Transforming Loss
Asaaaresult of this loss:
What I own isn’t as important.
*I can get along with less than I have needed in the past.

*1 believe there is someone or something more powerful, loving,
lasting and wiser than any single human being.

I know I want other people in my life.
*I feel connected to the world and to nature.
*I know I am in the right place for me right now.
*I realize that I can’t live without loving myself.
*I have something important to share with others.

I listen to what my body tells me.

I feel strong.

I am active in caring for myself physically.

I enjoy touching and being touched.

I listen to music.

I live as fully as I can.

I can love and be devoted to another without losing myself.

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I am more consistently aware of what’s important.
I have rediscovered the essential part of me.

I want to help others who have this kind of life experience in
common with me.

I have time for my family and friends and time for me.

I feel lovable.

When these statements are examined, they affirm a high level of
change from loss. These statements on self-love, self-care,
attention to personal needs, and clear priorities are all statements

that are positive and powerful.

Self-Empowerment (Reformulation)

As aaresult of this loss:

I enjoy being alone.

I spend time by myself.

I feel challenged to keep on going.

I don’t spend as much time thinking about the loss.
*I feel loving and affectionate.

I’ve learned to respect myself.

I am at peace.

I can feel both joyful and sad.

My feelings are valid.

This section on self-empowerment is a very strong segment as to
how the subjects had reformulated their lives after their losses.

They had learned to respect themselves, enjoyed being alone, and had

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an acceptance of feelings related to love, joy, sadness, and

affection.

Low Agreement

The following statements reflect a score of 1. With a
composite score of 6, these statements reflect that this was not
true about the subjects’ current responses to the loss. These data
are not absolute because of a problem that arose in the scoring
mechanism. There were two levels of variances in the responses
related to 0’5 and 1’s:

1. Questions related to sex and relationships were responded
to in a very different way by the 20-year-old subject. In the
researcher’s opinion, this reflects a developmental issue.

2. The score of 0 was in some cases misinterpreted by two
subjects and used in place of l on the questions where they had a
question about what was being asked. Upon review of these surveys,
correlations with the past interviews, and follow-up questioning,
these inconsistencies were validated. In a follow-up sampling,
Subject 6 confirmed that 0’s were used when l’s more accurately
reflected her feelings. What is interesting is that, even with
these possible errors, the scoring validated the earlier states to a
great degree. It must be kept in mind that these statements reflect
how the subjects currently did not perceive themselves. They might
be more easily understood if the reader inserts the words "I do not"

or "does not" in each phrase.

 

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Holding On
In the time since myaloss:
I look at reminders of my loss (e.g. pictures, mementos).

Until it is proven to be beyond any doubt that this loss is
real, I will keep looking for it/him/her.

Almost anything can remind me of my loss.
I think I am responsible for this loss.

I feel that I should have done something to prevent this from
happening.

My feelings are so intense I’m afraid I’m losing control.
I try to hold back the tears.

I dream that it never happened.

Because of this loss:

*Life seems unfair.

These statements reflect a healthy perspective. The
individuals seemed not to be dwelling on the past or their
illnesses. They seemed to believe that they did have some order to
their lives and did not fantasize about what their lives would have

been like had the illness not occurred.

Letting Go
Since the time of this loss. I have thought:

I cannot imagine how anything positive could have come out of
this loss.

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In the time since this loss:
I feel dissatisfied with everything.
I get upset with myself fOr the way I have behaved.

These statements reflect high levels of balance and very little
focus on the need to let go. Because there were few statements in
the area of letting go, one could reflect that these issues were no

longer of concern for this group.

Awareness
Since the time of this loss:
It’s been hard to concentrate.
I am less confident.

My friends have been avoiding me.

Bagause of this loss:

It’s hard to express what I feel in words.

Being in certain places can unexpectedly stir up feelings.
I feel pangs.

I feel a great deal of hurt or emotional pain.

I don’t know if I can stand the physical pain for one more day.

This section can be read to reflect that the individuals had

gained a level of personal awareness and control.

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The following statements reflect scores of less than 6 and
could be considered in the range of 4 to 5. Given the possible
variance related to the use of 0’s in place of 1’s, these statements
would be even more significant. Due to the way the survey was
written, it might help the reader to read these statements with the
opposite intension; for example, ”I believe that this loss really
happened," or ”Nothing could have been done to prevent this loss."
Double asterisks indicate it would be very easy to misinterpret the

statement as a function of lupus and not loss.

Holding On
In the time since my loss:
I would do almost anything to get back what I’ve lost.
I don’t believe that this loss really happened.
Something could have been done to prevent this loss.
I think that I am good or perfect enough.
What was lost will return.
I wish things were the way they were before the loss occurred.

I keep thinking something could be done to bring back what I
lost.

If I tried hard enough, I can bring back what I lost.

I hope that I am dreaming and I’ll wake up and find out it
never happened.

I’m scared to share what I’ve been thinking, feeling and doing.
I feel guilty or disloyal when I forget about this loss.
I want someone to be punished for this loss.

I feel guilty just thinking about enjoying myself.

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I am afraid to think about anything else but my loss.
I’m afraid I’ll forget my loss if I stop thinking about it.

I can’t control my feelings when I’m with those who share my
loss.

Unless something happens soon to change this, I don’t know if
I can control my feelings.

My feelings are so unpredictable I wonder if I am crazy.
I’m not ready to let go of my feelings about what happened.
I dream that it never happened.
I dream that something has happened to reverse my loss.

**I am sleeping less.

**I don’t eat as much.

Bagause of this loss:

It would help if someone could help me understand this.

I am not able to forgive those who contributed to this loss.
I won’t accept that this loss has happened.

I am determined to make those responsible pay for this loss.

This loss must be changed.

These statements reflect and affirm: many' of the statements
related to transformation and self-empowerment. Issues concerning
recovery from the loss, guilt, fear, and control are all positively

reflected in these statements.

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Letting Go

Since this loss happened:
I have kept secret what really happened.
I don’t spend as much time with my family.

I refuse to discuss this loss.

Since the time of this loss, I have thought:

 

I deserve a better deal than I’m getting.
I can think of very few people worth my time and energy now.

That I’m better off without it/him/her.

In the time since this loss:
I feel confused and disoriented.
If I let myself, I get so unhappy I can’t stand it.
People irritate me.
**I’m fed up with spending so much time on this.
I’m ashamed of the way I’ve behaved.
It’s hard for me to trust anybody.
Nothing has really made any difference, so why do I bother?
Nobody cares how I am doing.

I lack the energy to make sense out of it.

Keeping in mind that none of these statements is true reflects

the subjects’ high level of freedom from the pangs of their losses.

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Awareness
Since the time of this loss:
I’ve a not been interested in meeting anyone new.
I get so preoccupied that I forget where I am going.
I avoid being alone.
I lack love, affection and companionship.
It’s hard for me to make decisions.
I avoid being in new situations.

I forget to do routine, everyday tasks.

When I thinkaabout this loss:
I am scattered and ineffective.

I am unable to find anything to look forward to.

Begause of this loss:
I miss feeling happy.
I wake up during the night.
**It’s like I’ve been hit in the stomach.
**I hurt all over.
I never seem to know what to do with myself.
My dreams remind me of my loss.
There is nothing positive or redeeming about this loss.
My beliefs don’t give me the comfort they used to give me.
It seems like I have lost my desire to live.
I question the existence of the God I used to believe in.

I’ve lost my sense of innocence.

 

[m

(8:

 

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**When I’m convinced things can’t get any worse, they do.

There are parts of me that are missing.

Given that all these statements were negative, the group
consistently reflected a positive outlook.

Summary. The group affirmed a very high degree of (a)
Integrating the Loss, (b) Self-Empowerment (Reformulation), and (c)
Transforming Loss. These elements of loss are generally present in
individuals who have lived through their losses, dealt with them,
and transformed their losses into positive growth experiences. This
kind of transformation is a powerful and developmentally appropriate
place for individuals who have experienced a single loss and
confronted it over time. What is interesting is that these subjects
had diseases that were in progress and evolving. Their losses
continued as we talked, and their losses related to this illness and
health continued daily in some cases. Yet their perspective, their
transformation, and their self-empowerment reflected a different
perspective, one that seemed to separate them from the loss and
allowed them to be objective and yet aware. It was one that
acknowledged pain and suffering and yet allowed them to live rich,
full lives that were limited by their disease but not by their

perspectives of their ability to participate and find joy in life.

Significant Disagreement
The following statements reflect significant disagreement among
the subjects. These are statements that reflected inconsistent

responses or disagreement. In these statements a subject or two

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were in disagreement with the majority. Composite scores were in
the range of 6 to 12 but reflected one person who responded
inconsistently with the group; this person was not always the same.
Scoring was reflected in this manner. Most of the group would
respond with all 0’s or 1’s, and one person would respond with a 5.
It should be noted that variances in these responses could be
related to a subject’s physical status and not loss. These

statements are summarized in totality at the end of this section.

Holding On
In the time since my loss:
I am smoking more.
I’ve increased my exercise.
I have lost weight.
Sex gets my mind off the loss.

The inconsistencies here may be more easily understood given
the following factors: One subject could not exercise, one came

from an abusive—compulsive family environment, and one was single.

Because of this loss:

I believe something good will happen.

Letting Go
Since the time of this loss. I have thought:
Something else is going to go wrong.
If I don’t look out for myself, no one else will.

No one can change what’s already happened.

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Even if I could understand why it happened, it wouldn’t change
anything.

It’s best not to dwell on the past.

In the time since this loss:

I avoid feeling too sad about this.
I’m gaining weight.

I don’t remember any dreams.

I exercise less.

I’m more clumsy and accident prone.

I’ve realized that nothing could have prevented it.

It was difficult to understand the validity of these responses
without knowing the current status of their diseases. That is, if a
person was in remission, she might have been further along in the
grief process. If her SLE was active, her losses may have been

continuing.

Awareness
Since the time of this loss:

I have very little to say.

When I think about this loss:
I’m reminded how little I really control.

I remember what happened as clearly as if it happened yesterday.

I know I cannot bring it back.

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Beeause of this loss:

I really miss it/him/her.

I lack a sex life.

It is easier to realize that someday I will die.
My faith has been shaken.

I cannot continue life the same way as before.
There is a great emptiness in my life.

No amount of money could ever replace my loss.

I know I will lose things and people important to me.

Perspective
In the time since this loss:

Activities like getting a massage, painting or music are
soothing.

It helps when I don’t have anything to do.

I think about the effects of this loss: how I have changed,
what is different.

I realized that I’ve lost a lot, but I haven’t lost everything.

I wasn’t the only one who contributed to this loss.

In light of this loss:

I still hurt, but the pain has lessened.

My guilt has lessened.

My disgust over what happened has lessened.

The aches and pains I used to have with this loss have
lessened.

I notice how things smell and taste again.

I enjoy being touched and held once again.

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My dreams seem to help me understand and accept what happens.
It takes less energy to do things than it used to.

I believe there is some good in every person.

My life will continue.

My life does seem to have meaning.

Life seems more fragile and precious.

Whatever I contributed to this loss, I did not want to happen.
There are limits on what I lost.

The fond memories are there along with the painful ones.

One’s perspective may be significantly influenced by the degree
of involvement with his/her illness. A critically ill person may
have a very different outlook than a person who is not ill or

physically impaired at the time of responding to this inventory.

Integrating the Loss
In the time since this loss:
At least one person knows that I’ve forgiven myself.

I understand why it’s important to have times of celebration
and remembrance before it’s too late.

I don’t need to be so much in control of things.
I would not reverse this loss if it meant giving up my growth
from it.
Self-Empowerment (Reformulation)
As a result of this loss:
I’m more assertive.

I’m able to take risks again.

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It takes less effort and thought to do what I need to do.

I spend time by myself.

I’m not as serious a person.

I’m more creative in my approach to life.

I enjoy dreaming as much as I do reaching for them.

I’m more patient.

I see the past as just as important as what is happening now.
I’ve realized that I can do destructive things.

I am not as hard on myself when I make mistakes.

Sadness reminds me how important this loss was to me.

It’s hard for me to be bored.

I’ve found new ways to express my feelings.

I enjoy the intimacy, closeness and pleasure of making love.
My dreams make sense.

I believe that death is only one of many transitions I’ll make
in life.

Some kind of "inner" wisdom has been guiding me.

Transforming Loss:
Asaa result of this loss:
I am sometimes surprised by what I know and say.

I’ve discovered that the most important parts of my loss remain
alive inside of me.

I know the cycles of life have times of birth and death.

I am curious about what will happen after I die.

These components related ix) transformation, self—empowerment,

and integrating loss can reflect personality and maturation factors.

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If they were factored out through further analysis and possibly the
use of an additional segment of this tool, the results may be even
more dramatic.

The statements in this part are difficult to interpret in any
absolute sense. It might be said that these kinds of variances
reflect individual differences, developmentally and culturally.
Furthermore, it could be stated that these statements might reflect
variations in the intensity of one’s transitions related to each

subject’s illness and life.

Summar

The composite of statements in this section provided the reader
with a sense of those areas in which the subjects were in basic
agreement as they viewed their lives. It also provided an overview
of some elements on which there was a good deal of inconsistency.
In addition, this part of the chapter further elucidated the nature
of the group and demonstrated, to a strong degree, a high level of
self-empowerment and transformation.

Furthermore, the group as a whole reflected a very positive
perspective on life and had integrated their losses and gotten on
with life. This might be due, in part, to the homogeneous nature of
the group. Each subject was female, had 5 or more years since
diagnosis, and had volunteered to participate in the study. They
all expected that their involvement in the study might help someone

else.

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Assertions

This section is a composite of vignettes, LCI responses, and
responses to the RTL inventory. The criteria used to address these
assertions included (a) stated changes in beliefs as a result of the
transitions, (b) demonstrated changes in behavior, (c) stated
changes in priorities as a result of the transitions, and (d)
demonstrated changes in priorities as a result of the transitions.
It should be noted that these assertions evolved from the
preliminary work that the researcher completed in preparation for
this research.

This section has two parts. The first contains a discussion of
the original assertions that were named in the initial proposal.
The second part contains new assertions that evolved from the

research process.

Original Assertions

Assertion l. Illness forces people to evaluate their lives in
profound and lasting ways.

 

There was a great deal of support for this assertion at many
levels.

Mamilym. Marilyn had faced a great deal of illness throughout
her short life. She was the youngest subject. Her early
involvement with chronic illness made her experiences somewhat
different. There were a number of developmental issues that were
difficult to separate from her illness. Her illness had been the
major controlling factor in her life. She was diagnosed at age 14,

but she had many complications and some preliminary diagnoses of

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other illnesses. Her access to relationships and her opportunities
for relationships outside of the family were limited, in contrast to
the other subjects. Marilyn was single, had never married, had
never been engaged, and had no history of long-term relationships
with males. Her lifetime reflected many flare-ups, some lasting six
weeks or more. During these times, her symptoms ranged from mild to
severe pain, to being bedridden and incapacitated. At times, she
perceived herself to be near death. Some times were worse than
others. She had to face not only her pain and physical changes, but
also the issues of development and maturation at the same time. The
relative isolation from peers and the possible lack of intimate
dialogue with friends who could help her frame her experiences were
issues. It seemed that she was alone in a crowd of adults. Many
times she had feelings and fears, with no one her age to support
her. Time had not permitted her to develop enduring relationships.
It is difficult to determine which factors contributed most to her
transformation and development.
After I finally decided that I am going to focus on now, one
day at a time, I have only had two sessions where the pain was
so bad that I couldn’t handle it. It seemed like no matter
what I did it just continued to happen, it just happened. I
just didn’t believe it would happen again, but it did. That’s
when things get confusing. You think that all is going to be
fine and life begins to get a little consistent and then this
happens.
I guess there are always going to be storms. There are no
seasons, only life itself. I think if I hadn’t gone through
the last six years of finding myself I would definitely not be
at this point I am now. I think the illness has opened me to
seeing things in a different way. When your body is

deteriorating around you, that is when you have to begin to
separate your mind from your body and say things will be OK.

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I keep learning more and more. I think it gets difficult for
my parents at times. It’s been six years or maybe more, now
that I look back at it. I learn more each time. It has helped
me clarify my priorities. I am at a point of acceptance with
my illness. I know that it will get worse at times, but I
believe it will get better.

It should be remembered that Marilyn was only 20 at the time of
the study. The statement, "I learn more each time," is an example
of the depth of Marilyn’s perception of her own growth.

My philosophy of life has changed. Before, I never gave much
thought about life or responsibility or death. I never really
considered it. I always acted grown up, but now . . . now I am
more focused on feelings and thoughts. My priorities are my
family, their health and well-being, their happiness, my
health, and school.

Anne. Anne had had a great deal of illness and change for a
young person of 29. She had been very athletic, competitive, and
.hard-driving as a teenager. As her illness progressed, her
lifestyle changed drastically. She could no longer be as
competitive and hard-driving as she had been. Her goal orientation
changed, and so did her expectations for her life. She had several
years of transitions focused on compromised health and changing
health. Included in this time was a year in bed. Her life was
turned upside down, and she was forced to make many choices that she
would not have considered before her illness. There was a gradual
but profound change in her life. She stated:

I gained a sense of who I am. I realized that I was more than

a physical being. I realized that there is life beyond the

visual. Dealing with my physical being was the hardest part.

Where I am is where I am at. People’s influence in my life

became less. My physical features do not matter; I will smile

and be me. I can’t be anyone else. I am not a thin person nor

a fat person; I am me! I realized that life is going to go on!
I am different now. I don’t know what would have been, but I

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do know what has been. Life has become much more simple. I do

not have to keep up with anyone for any reason. My priorities

are more clear. I can pace myself and feel OK about it. If I

cannot get it done today, I will most likely get it-done

tomorrow. It will always be there. iI know it sounds funny,
but I am thankful for my lupus.

Anne’s comments reflect changes in goals, expectations, and
behaviors, all related to her illness. Her illness caused her to
evaluate and change her behavior at very intimate levels.

Bella. Beth was at a point in her life where, she said,
"[either] I curl up and die or go on living. I choose to live."
Her life before SLE had been one of unhappiness. She had been
bulimic for many years. She had been rebellious and unhappy with
her life in general. She was in a marriage she did not want, and
she was facing a difficult pregnancy. During that time, her SLE
began to manifest itself in more significant ways than it had up to
that point. The illness compounded her difficulties, but the real
turning point came when she confronted the reality that she was
pregnant and in a bad marriage. These two realities, her
deteriorating marriage and her illness, became increasingly present
in her life. She did not want to remain married and was confronted
with a baby she thought she did not want.

The first reality was easier to solve: Get a divorce. Her
second decision, about the baby, was a more powerful issue for her.
She had been scheduled for an abortion when she decided to keep the
baby. This action brought about a profound change in her life.

After 11 years of bulimia, she started to take care of herself. As

she began to move through this time, her SLE began to manifest

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itself. The fatigue and the pain became more prevalent. She spoke

of these times as follows:

If I was to go on living, then I decided I was going to have
the best life that I can have, and so that is what I did. I
made the active choices. I found it’s OK to look beyond. I
think the turning point of choosing life for me was when I got
pregnant. I filed for divorce. I made the decision I was
going to have to do it for myself. It took a long time, but I
did. It was the first time that I really took charge of my
life. I really realized I was empowered just about the same
time I was diagnosed with lupus. I was diagnosed after 12
years of active symptoms. When I became pregnant, life became
even more hectic. I just didn’t realize the power I had to
control my own destiny. I think as I have become empowered my
control over my lupus has improved. I think it has worked to
my advantage. When I was forced to reevaluate my life, I
became empowered.

In Beth’s situation, part of what had an effect was a
significant change in her relationships with her husband and the
possibility of being responsible for another’s life. The other
factor was her lupus. The birth of her daughter further led to a
powerful realization. She said she experienced unconditional love
for the first time. It was through this realization of being loved
that she shared:

When I began to experience the love of my newborn and her

unconditional acceptance of me, I began to learn to love

myself. The illness just cemented my desire to keep on
fighting and living the best I can.

In Beth’s case, it would be difficult to separate the effects
of her illness and the effects of the changes in her relationships.
What is clear is that there was a major change in perception and
self-esteem, which led to significant behavior changes. Her bulimia

ended after 11 years, and she started a new page in her life. As

she said,

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I like me now. . . . The birth of my daughter helped to get me

there.

There were also significant changes in terms of. her
professional aspirations. She had been trained as an educator, but
because of her health she thought she could not commit that much
energy to teaching. She decided to take a job that required less of
her energy and had benefits. She said that she would not accept
more responsibility at work. She had to conserve her energy to help
meet her other responsibilities--the family. She also had to rest a
great deal.

I am shot after 7:00 p.m. I just do not function. I also know

when I have been pushing too hard, and I pay for it. I have to

listen to my body.

Illness does cause change and requires adaptation for survival.
Many times the choices are limited.

Geraldine. Of all the subjects, Geraldine had had the least
involvement relative to her illness. Her life, although modified
somewhat as a result of her illness, had been changed the least.
She had pain and fatigue and definitely had to monitor her
activities. But in comparison to the other subjects, she had the
least involvement. Relationship issues had been the greatest
influencing factors:

I guess going through all the pain of divorce I realized I had

to open up and let go. I couldn’t go on living that way. I

was really hurt, and I was lower than I had ever been before.

It was probably the worst experience of my life. When I lost

my job I was also really affected. I couldn’t believe that

they fired me. There wasn’t anything there for a long time. I

just had to open up and get it out. I am still learning. I

take time out for my animals. I love to read. 11 am taking
time for myself.

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Sagan. Sarah’s story revolved around issues of relationships.
Her illness was a factor that contributed in many ways to who she
was and the kinds of issues she was forced to confront, but it
seems as if the realities of her confrontations with illness were
not as significant as her concerns with her relationships. Her
husband was in transition for many years. As an adult, he was not
happy with his life. He had had a good job and was not happy, so he
decided to go back to school. They sold their new house and their
possessions, and Sarah went back to being the provider. She became
the breadwinner, and her husband went to school and helped with
raising their children and maintaining the household. Sarah said
that, in spite of his problems, he was always a good father and a
caring person.

The turning point for Sarah came after her husband had received
his degree. He had started in his new profession, working in
another town and living at home on the weekends. Their son was
having problems with drugs and was in a great deal of trouble. Her
father had just died. They had returned home to a weekend
relationship. After all ‘this disruption--the selling of their
house, the moves, and the sacrifice and supporting the family--he
was still having problems. What Sarah encountered was that he was
still unhappy and reflected it. He had come home for the weekend.
Sarah had been anticipating a nice time together and had made a
special dinner. When he arrived home, he had been drinking and his

alcoholism had returned. The roof came crashing in on Sarah:

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I hit bottom. My father had died. My son was on drugs. I had
lost my job. I had lived in chaos, and I thought things were
getting back to normal. My husband is still discontent and his
alcoholism is returning. I was alone.

Sarah had been left to handle it all. She began to run into a
significant problem dealing with what was happening.

I was at my wits’ end. I did not know what to do. I couldn’t
sleep, and I was angry. I got out of the house feeling really
upset and helpless. I had put my life aside. We moved; we
sold our house and everything for him to go to school. We
lived in student housing, and when he finished nothing had
changed. Everything was falling apart around me, and I was
feeling worse and worse. I just got in the car and began to
drive. I was just driving. It was about 3:00 a.m. I was
crying and I was really confused. I yelled out at the top of
my lungs, "Oh, God, help me." There was an immediate peace. I
can’t really explain the feeling. There was a feeling that I
wasn’t alone. I drove home, crawled into bed, and I know I
wasn’t alone and that I would make it. All I can say is that
that peace has stayed with me to this day. I really believe
that was a turning point for me. After that, nothing changed
right away, but I felt better and I was able to confront the
issues in my life. I had after that time a belief that
everything would be OK. And you know what? That is exactly
how it has worked out. The Lord really works in mysterious
ways.

What forced my growth was an alcoholic father who abused me
psychologically. He did not talk to me for two years because I
had a boy friend he did not like. My husband was a drinker,
and my son was into drugs. He even killed someone with his
car. I think a lot of my issues were clarified prior to my
illness really getting bad.

Another factor that was present in Sarah’s story was that
illness causes people to evaluate their lives in profound ways.

I think the most significant thing is that my illness brought
my husband to the Lord. He had always loved me, and he was a
good caretaker of the kids. He just had problems and was not a
happy person. My illness scared him to death. When he thought
I was going to die, that made a difference. "I don’t want you
to go somewhere I can’t go." He did not want to die and be
separated away from me. He knew that if he continued to live
the way he was living, there was a good chance that we would
end up in different places for eternity, and he couldn’t handle

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that. The understanding that I could be somewhere without him
was the turning point for him.

To completely separate Sarah’s illness and its impact on her
life and the significance of her relationships would be extremely
difficult. No one lives with his/her life compartmentalized in such
a way that one element does not affect another.

m. The depth of Teresa’s changes is hard to quantify.
Throughout the interview process, she shared a continued changing
and clarifying of priorities and spiritual understanding. The
illness had been a long and continuing transformational issue in her
life. Her subject profile reflected a never-ending series of
illnesses. At three different times she was extremely close to
death, and on innumerable occasions she was gravely ill by normal
standards.

All the time, since I was 16 or so I guess, way back, someone

has been trying to tell me something all along, and I was too

dumb to listen. You would have thought I would have woken up a

long time ago, and I thought I had, but I guess I didn’t. I

finally made up my mind that I had to make the best of what
life I had.

I went through a time of grieving. I would ask, "Why me? Why

me?" At times I would lie lifeless on the couch. I couldn’t

talk. I have come to live today, not in the past.

I can see now that each time in my illness the Lord moved in

many ways. I was saved when I was 16 after my father died, but

it is different now. I don’t let things bother me. I look at

life differently.

Teresa’s story was one of the most powerful. In listening to
her recount the numerous sequences in her life around illness, the
researcher was amazed that she was doing so well. She had been

blind for a short period, bedridden for countless days and months at

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various times, and so allergic to medications that she could not be
treated when she had her last heart attack; yet she had persisted
and flourished. Teresa’s story is a testament to the power of the
human spirit and faith. She persevered and lived in ways that few
people could understand.

ngma_y. It should be noted that, although all of the subjects
encountered profound changes during the development of their
diseases, their diseases were not the only significant factor to
affect their lives. The influence of relationships as a part of
their life experiences was difficult to separate from their illness.
This was especially demonstrated in the LCIs of Geraldine, Sarah,
and Beth. Each stated that changes in relationships were
significant factors in their lives and that these changes were as
meaningful as the experiences their illnesses provided. Without
exception, group members stated in the RTL the following
affirmations of this assertion:

What I have left in my life is enough to keep me going.

I’ve decided to go on living.

Life is worth living again.

I’ve discovered there is more to me than meets the eye.

I know that things in my life can change and life can still be
meaningful.

Hence the assertion would be stated better in the following manner:

Illness and significant changes in relationships with others or
work appear to cause people to evaluate their lives in profound
and lasting ways.

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Assertion 2. There cam be; positive rcflationship between;
person’s illness and the glglitv of his/her life g. he/she

perceives it.

This assertion has many implications related to quality of
life. Many of the statements included in this section are best
understood from the perception of the person speaking.

@1111. Generally speaking, Marilyn demonstrated excellent
health and well-being skills. It should be kept in mind that she,
of all the subjects, had significant impairment related to fatigue
and recurring flare-ups. She reflected a high level of self-
responsibility and caring that she believed had been mandated by
her illness over the years.

Exercise helps a lot. I meet people. It makes a difference in
my self-esteem.

Generally, I feel really like I can take care of myself.

I have always kept my own medical records ever since I was a
teenager. If there was a problem I would call the physician or
the pharmacist and find out the answers.

I feel I have a good sense of balance in terms of my self—care
and energy; exercise creates a lot of joy.

Although Marilyn did not have the same clarity of priorities as
the other subjects, she was very clear about what was important to
her and where she wanted to go:

Something I really need to do is balance my focus. Right now,

I am really focusing on my schooling and professional growth.

The only two things that are really important to me are my

schooling and my family.

She had gained a number of profound understandings about herself.
She said,

Over time I gained a sense of hope. I have found that my
flare-ups would improve over time, no matter what I did.

 

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She also made a statement that none of the others shared in this
way. One of the strengths she had was empathy. She said that when
another person was in pain or doubt related to his/her illness, she
could relate to that individual at a very deep level.
Empathy for others who are ill is something I have a sense
about that others may not understand. When I see a person who
is sick, I think I have a different understanding than most.
Anne. Anne was one of three subjects who had experienced a
profound series of SLE-related illnesses. Her disease involvement
was significant at many levels. Her illness had not only challenged
her physically, but she also had faced tremendous fears and had
overcome them. The following statements give a picture of the kind
of person she had become:
I realized that I can contribute. I am capable. I am healthy.
I can help people to understand more about my illness, and I
can give back to others. Sure, I have ups and downs, but
that’s life! It’s not anything more.
I was internally focused before. Now I have moved my focus
outwardly. I understand there will be health issues for me,
but I am OK with that.

I am accepting. I didn’t fight on the illness. I didn’t fight
the illness I meant with more.

In terms of Anne’s nature, a number of factors became evident.
She had a clear sense of her priorities. She knew what was
important to her and could manifest it in her life. There was no
question in her mind as to what was important in her life, and this
sense of priority created a simplicity and order that are not often

seen .

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My priorities are totally clear. I know what is involved in
the family. I don’t get caught up in keeping up with anyone or
any trivial thing that does not fit with my priorities. That’s
what is important to me. .

I don’t get caught up in keeping up with anyone.

The family is my focus, and I feel good about it. I have not
always been clear on my priorities. Before my illness
manifested, I did not have this same kind of clarity.

My schedule is protected. I have to live my life by my
priorities. I can’t do it all.

In addition to a clear sense of priority, Anne had an intense
interest in learning and growing as a person. She had a keen
interest in reading and learning more about parenting skills.

I am really interested in growing more and in helping others to
really accept illnesses and grow more.

I am excited to think about expanding and growing.

Given the intensity of Anne’s illnesses, it is interesting that
she could still make a statement like the one below. Her
perceptions concerning health and well-being were different, and so
was her sense of herself.

I still view myself as well and healthy as anyone. I have a

great deal of balance now that I did not have before. I have

balance both physically and spiritually.

After it’s gone [a flare-up], I start to focus on what’s left.

Beth. The most significant change for Beth was her realization
of being empowered. Before her illness and transformation, she had
a belief system that gave the responsibilities for her life to
others. She was not happy, and she blamed others for her position

in life. Now her perception of her own ability to influence her

life and her directions was entirely different. She thought she had

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a high level of control and that she could make decisions that were

good for her.
Previously to my being empowered, everything was done or
decided by other college, marriage, and school activities. Now
that’s different.
She had learned to assert herself at many levels. She no longer
allowed others to make important decisions for her.
I learned to fight for me. If I was to survive, I had to learn
to say "No" and make people understand that I had to stand up
for me.
I realized that each of us is responsible for our own lives.
Here, Beth reflected a high degree of self-actualization and
confidence. As compared with the behaviors she had before her
transitions, this statement was very different. Before, she had
been bulimic; she was depressed and very disillusioned with life.

Now she was a different person.

I know what my priorities are. I learned that the sooner I
took care of myself, the better I would survive.

Geraldine. The key factors in Geraldine’s transitions were her
relationships and the adjustments she had to make to her life
related to fatigue and allergies. What she gained from her
transitions was a different perspective on what was important to her
to live. She expressed a strong need to reach out to others and not
isolate herself as she had done in her relationships before her
divorce.

Since my divorce I have developed more anchors. Before the

divorce I was isolated and alone. Now I have a lot more people

who I can rely on and who support me in what I do. I feel a
lot better.

 

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I went to counseling a couple of different times, and this last

time I really think I gained from it. I definitely know that I

would do it again if I felt I needed it.

Geraldine had the ability to understand more of what she needed
and to seek help now that she did not have before. She thought she
had a better self—esteem and was happier with her life.

I found that if you can’t do it totally, then maybe you can do
it in part.

I don’t do many things that I don’t want to do anymore. I did
too much of that before. That was the way I was raised, and I
was not happy.

I have found for me that I need more than simple existing. I
need joy in my life, and I am responsible.

S_a_r;a_h. Sarah had lived a difficult life in many ways,
beginning with her father’s alcoholism and then her marital
disappointments and culminating with the manifestation of her
illness. She had expended tremendous amounts of energy trying to
help all those around her: her mother, her husband, her son, and
her father. She had a tremendous capacity to love, and in so doing
she had to confront a lot of issues. Her understanding that she
could not be responsible for the problems others had was a profound
learning and one that very few people truly understand.

I learned that I am not responsible for everyone’s problems. I
will do all that I can, and I know that you won’t let it go.

The next statement sets the stage for understanding a.part of
Sarah’s values and her belief system related to expectations. She
demonstrated a clear sense of having some control over and optimism
about her life.

I look at the future. I look at work, at graduation, and if
part of it may not happen, who cares? Part of the life joy is

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expectations. A bigger part [of life] is being where I want to

be and moving toward that direction.

I think if I were not in school I would not be so well off as I

am. I get to see people whom I can love and who are worse off

than me. I get to share and grow when I am there, and that’s
where I need to be right now.

In spite of the fact that Sarah was heavily medicated with pain
killers, she shared this perception. She had learned to focus her
energies away from her illness and onto more productive parts of her
life:

I think I am healthier now than I have been in a long time. I
am aware of my body, but I do not dwell on me.

Subsequently, she shared that she could feel the effects of
stress. She was sensitive to stress and its effects, and she
listened to her body, a skill that few people really understand.

I can feel it. Stress. . . . To me it is like taking a 2" x 4"

and knocking me over the head. I really do listen, and I do

protect myself.

Sarah’s last statement again validated a clear sense of
priority in her life. In talking with her, there was no question
about what was important. To the very core of her being, she had a
special energy and sense about her.

My priorities are absolutely clear for this life. Love is the

key to it all. I believe that I have been put here for a

reason and that it is unfolding for me as it should.

Teresa. Of the six subjects, Teresa had been the most
physically affected for the longest time by SLE. In the following
statements, she shared a number of perspectives that she had gained

and held related to her life and the effects her illness had had on

her life. The specific statements reflect elements of her life that

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could be identified as quality-enhancing. Teresa stated in hind-
sight:

Lupus was my journey to wellness. What is interesting is that

the people who grew up around me seem to gain these skills

also. The gift is a different kind of gift.

As one reads this statement, there is an implicit understanding
that Teresa’s illness had not been a detriment to her being but had
provided an enhancement.

I don’t have to worry about anything anymore. I am concerned

and I care, but I am not going to let it get me down. I can

remember the pits, but I believe I am over the hurdle now.

Teresa reflected a life position that was very different from
that of most people. The duration and significance of her illness
create a framework for this statement that is very powerful.

The following statements project a sense of clarity about
Teresa’s position in life and her understanding of how she worked
best.

My priorities got clearer and clearer.

I always have goals, and they make a difference for me now. I

have always set goals for myself. I believe that it makes a

big difference for the kids. I always listen to my body.

As I proceeded on, I got stronger and stronger inside. Any
anger or hostility I may have had is gone.

The doctor has said that he likes to treat people like me.
People with intestinal fortitude, with a supportive family, and
who can listen to their bodies.

My illness has opened me up. In the hospital visits I have had
over the years, I had to talk. You had to share and learn
communication skills if you were to survive. This has made a
difference for me.

Because of my lupus, I have had to be very cautious about what
I eat. It is so hard, but it makes a real difference in how
hard I work and play.

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These statements give the reader a sense of the effects
Teresa’s illness had had on her:

I listen to my gut. It is something you did early, and I had a
good sense of intuition. I always felt I would survive.

I found the more I can help other people the better I feel.

Teresa further disclosed that said she had discovered she had
gained a number of sensitivities to herself and life.

This assertion was further affirmed in the RTL sections
pertaining to "As a result of this loss" and "In the time since this
loss." Throughout the collections of statements in total agreement
and very high agreement, there were reflections of this assertion.

In the section related to Self-Empowerment "As a result of this
loss," the following statements further affirmed this assertion:

I am at peace.

I’ve learned to respect myself.

I enjoy being alone.

I can feel both joyful and sad.

My feelings are valid.

I feel challenged to keep on going.

In the section on Integrating the Loss "In light of this loss,"
further support for this assertion was found in the following
statements:

Life is worth living again.

My life has times of joy.

My live has more to it.

I know my life is important.

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I feel better.
I don’t neglect my body.

I feel confident enough in myself to move on to other things.

Summa y. It appears there was a great deal of support for the
initial assertions. There was definitely a broad spectrum of
responses that individuals made related to the effects of their
transitions on their learnings and changes. There seem to be a
number of relationships that were identified in the research

process.

Additional Findings

Throughout the analysis of the data, a number of other
assertions emerged. In the process of collecting and analyzing the
data, a number of additional assertions emerged. These assertions
were a natural extension of the findings. As the reader reflects on
these assertions, he/she should keep in mind that there is a very
strong interrelatedness with both the old and the new assertions.
These assertions were related to three different areas of focus.
Part 1 of this section is directly related to the original
assertions and is an expansion of those data. Part 2 relates to
issues based on new perspectives on the relationship of modeling,
positive relationships, and love. Part 3 reflects a number of
assertions based on issues related to chronic illness and the
processes related to diagnosis. Part 4 is a collection of
assertions related to the correlation with heredity, the autoimmune

system, and the relationship of significant allergic reaction as a

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precursor to SLE. Some of these assertions may be obvious to the
chronically ill but not to the researcher.

ant_l. In this part, two assertions are identified that may
reflect concepts that were developed from the original assertions.

Assertion l: The depth of the learninganperience increased as
the age of the subject and the intensity of the experience
increased.

 

It was apparent that the intensity of one’s transitions was not
limited to one’s illness but included transitions related to
relationships. It was apparent that loss was a common denominator
in all of these transitions at some level.

Assertion 2: Interpersonal relationship issues were also a
major influence in one’s responses to life changes.

This assertion was especially true in the lives of Geraldine,
Sarah, and Beth. Each of these subjects demonstrated this in the
following ways.

Geraldine had had two marriages and two divorces. She was
living with a man and stated,

My illness was not as difficult to accept as the transitions
related to my relationships.

Sarah had lived her life trying to support a husband who was
unhappy* with his life. She had a child who had drug-related
problems, and she was struggling with her role and her own life
directions. For Sarah, the turning point occurred one night after
years of struggle and disappointment in her relationship with her
husband. He had come home drunk. She stated,

I left the house frustrated, angry and disappointed. I just
drove. It was late [and] I was crying. I screamed at the top

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of my lungs, "God help me!" A peace came over me that is with

me to this day.

Beth had an unhappy youth. She ultimately married and had a
disappointing marriage. She was bulimic and became pregnant. She
shared that once she accepted her pregnancy and realized her role in
the relationship, she stopped being bulimic. She had been bulimic
for 11 years. Beth commented:

Once I decided to have the baby and I began to experience love,
everything changed.

Although expressing the importance of relationships, Marilyn
had a number' of' developmental issues that. were occurring as a
function of her age. These factors were difficult to separate from
other factors associated with her illness process.

These two assertions are, in effect, related to the expansion
of the original assertions. The RTL inventory and especially the
LCI helped to expand these perspectives.

Bart 2--Priorities. love. and modeling. The assertions in this
part focus on changing priorities, the models of love the subjects
had, and the importance of love in their lives.

Assertion 3: Clear priorities can lead to order.

Each of the subjects expressed or demonstrated this assertion a
number of times. If they did not express it, they demonstrated it
in their behaviors or actions. Most of the subjects controlled
their schedules and knew where and when they were willing to
dedicate time to a project or a relationship. From a stress-
management perspective, this assertion has implications for all

people.

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Marilyn. In line with this new assertion, Marilyn stated:

When you are ill as much I have been, you have a lot of time to
think about what is important and how you want to spend the
time you have when you are not ill. It makes a big difference.

Beth. When Beth was approached to be a part of this study, she

was very emphatic about the notion of how she was willing to use her

time:

were

I only have so much energy and time, and I really try to use it
effectively.

Geraldine. With regard to priorities, this subject stated:

I protect my time. I like to spend my free time with my
animals and reading. You only have so much energy.

Teresa. Teresa stated:

 

I thought my priorities were clear before, but not like they
are now. With each event they got more clear.

This assertion was manifested in a number of statements that
identified in the RTL:

I know that things in my life can change; life can still be
meaningful.

I believe there is someone or something more powerful, loving,
lasting, and wiser than any single human being.

*I feel connected to the world and to nature.

I have something to share with others.

*I am consistently aware of what’s important.

I have rediscovered the essential part of me.

*I have time for my family and friends and time for me!

The three statements marked with an asterisk are especially good

examples of the subjects’ understanding of order and their

understanding of priorities.

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Summary. The understanding and expression of this assertion by
the subjects in their daily lives is a very powerful statement as to
the profound effect their transitions have had on their lives.

Assertion 4: Love is apowerful influence in one’s life.

Marilyn. Marilyn expressed the presence of love in her family:

The most important thing to me is my family. They have always

been there when I needed them. . . . My dad and I always have

had a special relationship.

An_ne. Anne had been raised in a loving, committed family
environment. She spoke of the unconditional support she had
received from her mother and her husband, saying that had made all
the difference in the world:

They were always there, and they made a difference. When I was

ready to reach out, their hands were always there. There is

nothing more important than a loving family.

Be_t_11. Beth stated on various occasions that she was a very
unhappy person. She was in a bad marriage, unhappy with her life,
and very depressed. She was not taking responsibility for her life,
and she was not in control. She shared that she had been trying to
decide whether to get a divorce when she discovered she was
pregnant. She was angry at life and her relationship and decided it
would be best to abort the baby. She was scheduled for an abortion
when she realized she was not angry with the baby but her husband.
It was at that time she finalized her plans for her divorce and
canceled the abortion. She shared that, as a result of that

decision, some other things happened that were significant. She

realized that if she was going to be responsible for another’s life,

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she had to stop being self-destructive. She had been bulimic for 11
years; she stopped this behavior and started to take care of
herself.

Beth shared that, after the baby was born, she began to
experience what being loved was all about. She said that the baby
accepted her unconditionally, and therefore she began to love
herself more. This was the first time in many years that she
experienced unconditional love.

I like me now! When the baby was born, she helped me get

there. She accepted me unconditionally, and I wanted to be

more. I was in a bad marriage. I got to a place that I

couldn’t stay. I dreamed about my future and saw myself in a

grave, and I could not do that with the baby coming. That got

me to change.

Love is what keeps us going.

I think support and love is what makes all the difference for
me now!

Geraldine. The support of a loving mother had been a key issue
for Geraldine. She said:

I guess no matter what, I always felt I was loved. That has
made a real difference.

Her grandmother was also a special person:
I always had a special relationship with her. Up until she
died a few years ago, we would always have dinner together a
few times a month and talk and just be together. I miss her.
Sarah. Sarah’s home life was very chaotic. Her father was an
alcoholic, and her mother was a positive and powerful influence on

her. She was a loving model who influenced Sarah throughout her

life. Sarah described her mother in the following ways:

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She had a warm heart. She was a special friend that God gave
to me. She always loved me unconditionally. She was a lover,
and so am I.
This was demonstrated by a statement Sarah shared that her son had
made. He was in Arizona, having been sent there because of his drug
problems.

I could not send him money because he would spend it on drugs.
But every week I sent him a care package. Later, my son
said, "While I was in Arizona there was no one who cared about
anything, but I always knew I was loved in spite of who I was."

In reference to a number of tough but caring instructors she had,
Sarah said:

I had some really awesome instructors. They made me feel so
special. . . . She made me feel really good.

In describing her relationship to God, Sarah said:
My God was loving and gentle and good.
She later stated:

I had a client when I was working on one of the floors at the
hospital. He was in a psychiatry unit. I had been warned not
to get too close to him because he was dangerous. After my
supervisors left, I went in and started to talk with him. He
had tattoos all over his body, and it was obvious that he was
very alone. I asked him to tell me his story, and he did. He
was from a completely different side of life. [When we
parted], there was a tear in his eye. I knew that he had felt
something that he had not felt in a long time.

In reference to another relationship, Sarah related the
following incident. Her son was having a relationship with a pretty
girl who had told the family that she was ill and dying. She had
led the family on, sought a lot of attention, and hurt Sarah.
Sarah’s dialogue gave another indication of how she perceived love:

I deal in honesty. How I could be so stupid. Her lies did not

change a thing. I did not like what she had done. But that
has nothing to do with how I feel about her as a human being.

126
I got a hold of her and let her know that I still loved her. I
am going to love you whether you like it or not.
She concluded by saying:

It’s hard to not like you when you are being loved. If I care
about you and you are still angry, then that is your problem.

Teresa. Teresa was a highly spiritual person with a tremendous
capacity for love. That capacity had provided her with a great deal
of energy and motivation to keep on living.

I believe we were placed on this earth to love. If you learn

to love yourself, then you will be able to love and care for

others in positive ways.

Teresa was a powerful caretaker. She said that her desire to
get up in the morning often was motivated by her love of her family:

I would make sure I got up with the kids to make them

breakfast, and then I would have to lie on the couch after they

had gone because of the fatigue or pain.

I had to take care of myself for them. There is a sense of

spiritualness in a loving relationship. Strength is what the

spirit provides.
In referring to her family, she stated:

There has always been love for everyone here. Love and
spirituality are always here. I guess we are so fortunate.

The ability to model love in their own lives by their actions
and the presence of love in the lives of the subjects were affirmed
in the following ways related to the RTL. These statements are
categorized in terms of self, others, and the influence of others.

In terms of self, these statements reflect a great deal of

strength in the presence of self—love:

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I feel lovable.

I realize that I can’t live without loving myself.

I live as fully as I can.

There were also a number of statements about self-care that could be
interpreted as self-respect and love.

In terms of others and their relationship to the SLE subjects,
these statements seem to reflect the relationship to love and
others:

I can love and be devoted to another without losing my self.

I want other people in my life.

I want to help others who have this kind of life experience in

common with me.

Two additional assertions could also be developed from the
previous statements. It appears, for these subjects, that love
affects those who encounter it and influences their behavior. It is
not clear whether love can heal people physically, but it seems to
have a great potential to motivate people, provide hope, and affect
the spirit in profound and positive ways.

Assertion 5: The love of significant others is an essential
contributor to one’s understanding.

Assertion 6: The mpdels one has thromhout his/her life a__e

very powerful influences.

Summa y. Part 2 began to examine some of the relationships and
influences love has had on the subjects. The issues related to
these assertions are very complicated. It should be noted that all

of the subjects were compassionate. Each subject, in her own way,

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talked about the models of love and the presence of self-love in
her life. _
Part 3--Illness,:medicine. and communications. Another series
of assertions was developed around the issues of SLE, illness,
medicine, and communications. These issues were demonstrated
frequently in the literature and were later validated in the
interviews, the LCI, and the Lifelines. These assertions are as

follows:

Assertion 7: Access to caring. competentamedical professionals
makes a difference in the nature of the patient’saperception of
medical care.

Assertion 8: The inability to commgnicate one’s illness and

symptoms or to have others understand one’s feelings is
frustrating and painful.

Each subject found a need to seek either counseling or a
support group, or was referred to counseling for help during this
time. Not all subjects used this kind of help. They ended up
seeking help or being referred to help because their physicians or
families thought their symptoms were not real, or they were having
trouble coping with all the ambiguity in their lives around their
illness.

In the literature reviewed that included personal encounters

with SLE—-Embracing the Wolf, Living With Chronic Illness, The Sun

 

Is My Enemy, and Coping With Lupu --each of the individuals had a
significant number of years in which they experienced symptoms and
could not be diagnosed. They, too, had been referred to counseling

and misdiagnosed over a number of years.

ill,
what

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Marilyn. In reference to a situation in which she was very
Marilyn shared that her mother had difficulty understanding
she was experiencing. She stated:

This is the most frustrating thing because that’s who you deal
with everyday. It’s just like communicating with the doctor.
We are on different wave lengths.

I begin to doubt myself. Maybe I am not having the problems I
thought I was having.

Communicating where I am is a problem. Old stories get lost in
new pain. It is so hard to communicate the issues. The
response has been more than once, "You think we should go back
to the psychologist?" or "Well, I am going to take you to the
Mayo Clinic and the Cleveland Clinic so maybe we can get an
answer once and for all."

Part of the problem is that my flare-ups really vary, and to
someone who is not going through it, it is hard to really
understand. It may be localized in certain muscles or joints,
and if I treat those and go on with life it might be OK. Many
times I am left to regulate my medications and try to eliminate
the symptoms I can. When I have a major flare-up, it’s like
the flu. I can’t do very much. I really have to watch out. I
can’t do anything. Or I might end up in bed for a month,
feeling near death. Sometimes I feel so close to death, and no
one else really understands because they think it is like the
last one, which may or may not have been as bad. They all seem
to run together, from their eyes. And they are really not all
the same.

I was in the hospital a lot. I ended up at about the same time
every year. I began to feel comfortable there.

I can’t believe I forgot this. When I started college in the
spring, they said I was having central nervous system
involvement, so I went out to a head injury center and they
helped me. I went there for about a year. It was hard because
I had seizures. That is what started it, and there was pain in
the backs of my eyes.

Just last week I had a really difficult flare-up. I was
feeling really badly. I think it was the worst I had had in a
very long time, and she did not understand.

I was bedridden for a month in January. Then I was going to
graduate. Everything was really difficult.

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Anne. In reference to the same kind of situation Marilyn

faced, Anne responded:

The biggest thing in one’s life is the biggest until something
bigger comes along. It is still the biggest. It is all in
your reference to pain and joy and life and death, and it
cannot be understood in any other way by anyone else.

She also noted:

said:

On a number of occasions I had to go to the emergency room, and
the nurses would put on the oxygen mask because I was having
real difficulty breathing, but they did not turn on the oxygen
because they wanted to see if I was really in need of oxygen or
just faking it. My lips would be blue.

There was a lot of doubt and skepticism. What was really
amazing was that my mother had lupus and they had ruled it out.
It took them almost eight years to diagnose me with lupus.

Part of the problem is that no test is conclusive. Also that a
number of the symptoms of SLE are similar to some other types
of chronic illnesses. [It should be noted that testing is
becoming more sensitive.]

Beth. In the interview, Beth stated:

When I started having barline cysts again, I was told that I
had to live with them again. I said, "No way!" They couldn’t
understand how I felt. I found a new doctor. I had ovarian
cysts and barline cysts. My periods were all screwed up, and
there was no help. They said I had to live with it.

Geraldine. In reference to the birth of her son, Geraldine

He came two months early. Then came lupus. No one had said
anything about the other miscarriages I had had. Thus just
said, "Take it easy." After the miscarriages I had joint pain,
but I thought it was just part of growing older. I couldn’t
walk for a few days. The pregnancies were the worst part.

Sarah. Sarah shared in the interview:

When you hurt in so many places and so intently, you really
cannot communicate what you feel like, and no one really knows.

131

Assertion 9: The diagnosis of SLE can be an extremely
difficult and lengthy process.

 

As this assertion is considered, a number of other factors in
addition to the interviews can provide the reader with a more
complete picture of what occurred for this subjects. Table 7 on
page 79 shows the number of years each of the subjects went before
being diagnosed. The number of years before diagnosis a subject
with symptoms had ranged from 2 to 20. The average for the six
subjects was approximately 9 years.

All of the subjects had prolonged periods of illness and
symptoms before a diagnosis. During those periods, there was a
great deal of doubt concerning the authenticity of their problems.

Marilyn.

I was diagnosed when I was 14, but I had been having problems

since I was nine. I was recommended for counseling because

they thought that I really wasn’t sick; no one really

understood. . . . No one could really pinpoint the problem. I

had been first diagnosed with rheumatoid arthritis, and later

it was a diagnosis of lupus.
In reference to a conversation with her mother, she said:

Mom, I felt like I was losing control of my mind, I felt like I

was having seizures again, and that’s why I was so scared. It

wasn’t like all the other times. It just seemed that way to
you. I am sorry that it seemed like the hundreds of other
times this had happened, but it wasn’t!

Anne.

I was 20 or 21 when I was diagnosed with lupus, and yet I had

been having significant problems for six or seven years prior

to my diagnosis and the doctors even ruled out lupus. Looking
back, they never seemed to make a link that Mom had it and that

I might have it also. I guess what is hard about it is that
Mom’s lupus was heart related and mine was lung related.

132

flatb-

I had vague symptoms for years, but it was really hard to
communicate what was going on. I had lots of fevers, too. I
had a lot of problems earlier. I think my immune system was
always shaky. They took my tonsils out and I was still sick.
I also had chronic constipation. I also felt better with less
food.

Geraldine.

When I had my first miscarriage, they said I probably should
not attempt to have more children, but they never were able to
tell my why. I wasn’t diagnosed with lupus until after the
birth of my daughter, and even then not a lot was said.

Sarah.

I was diagnosed six years ago, but I had been having vague
symptoms for years. I just thought it was normal. I didn’t
realize what was going on.

Teresa.

I was diagnosed when I was 31. But as I look back, I had been
having problems since my early teens and maybe before.

In many of the readings, the issues of obtaining a clear
diagnosis, and communicating with people what the symptoms are and

how one is feeling, have been demonstrated a variety of times. In

books like Embracing the Wolf, Coping With Lgpus, Coping With

 

Chronic Illness, and My Enemyathe Sun, diagnosis was always a dif-
ficult and vague process.
Bart 4--Hereditary factors. autoimmune mmlfunction. amp

allergies.

Assertion 10: There seems to be a relationship among heredity.
autoimmune malfunction. and SLE.

Although a medical issue, the role of hereditary factors,
autoimmune-related chronic illness, and specifically SLE is not

clear. Are there other factors related to heredity issues that

133

should be considered in qualitative studies? This question has been
raised because five out of the six research subjects identified
family members, parents, children, grandparents, or cousins who had
either some form of lupus or other autoimmune-related problems. The
problems ranged from other family members with very severe allergies
to lupus and other autoimmune illness. The literature did not
indicate that there had been any significant research focused on
hereditary factors and SLE or other immune-malfunction diseases.

Subjects’ responses related to this issue included the following:

Marilyn:

My mother has M.S. She was chronically ill when I was a little
girl. When she was ill, I stayed home with her a lot. We were

afraid to leave her. She began to progress and eventually was
able to walk again. On one occasion, she had had a preliminary
diagnosis of lupus, but that has not been confirmed. She now
has her own business. Illness was a big part of my early life
with1my mother. Now the roles are reversed; she is well and I
am 1 .

Anne:

Mom was diagnosed with lupus when I was nine years old. My son
has also had one positive test for lupus, and he is nine.

Beth;

When I was six, I lost my cousin from aplastic anemia. That
was the first time I had experienced death. Many years later,
I learned that aplastic anemia is an autoimmune-system problem.
Later that year, my grandfather died. They said it was from
lupus. He was diagnosed the year before he died. He stayed
with us, and he used my bed and bedroom. He had dry skin and
always had to cover himself. He had to wear gloves and a hat
all the time. I think he had discoid and systemic lupus. My
grandma lost it totally after she had the twins. She ended up
in a mental institution, and six years later she died of TB.
During those years, she had a lot of vaginal bleeding, and I
believed she was very depressed. She gave up. Now that I
think about it, I had very similar problems related to bleeding

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that had been in part as a result of bars cysts that were
related to my lupus.

Geraldine:

I had really terrible dry skin when I was younger. I still
have it. I used to be teased a great deal by the kids at
school, and I hated it. They called me dragon lady. That was
a tough year. My mother had the same kind of dry skin
problems, and so did my grandmother.

111m:

My daughter has lupus. I sometimes wonder. . . .. I have felt
guilty in the past, but I now realize that there is nothing
that I could have done. My grandson also has been positively
diagnosed as having lupus once, but the diagnosis has not been
duplicated.

Assertion ll: Allergies were an earlv response symptom of all
the SLE subjects.

Marilyn:

My allergies got really bad. I wasn’t able to go outdoors
because of my allergies. Then the arthritis got really bad,
and after that I was diagnosed with lupus.

Anne:

There were many times when I was brought in to the emergency
room and I couldn’t breathe.

Beth:

I had a lot of problems that went undiagnosed in high school
and college. I had shingles in college and never knew it. I
just thought they were allergies, too.

Geraldine:

I have always been highly allergic. I have had extremely dry
skin. I have always seemed to have it. In seventh grade I was
tormented by the other kids because I had extremely dry skin.
I was just flaky and had rashes all over. My mother has the
same thing and her mother, too. We all had allergies. Mine
happened to be worse. My allergies really get bad sometimes
when I am haying.

135

Sarah:

 

I have always had super allergies. I had migraines since I was
ten. I can remember headaches for two weeks at a 'time.
Everyone had allergies. I just thought it was normal.

Summa y. The relationship among SLE, heredity, and allergies
was not discussed in the literature. The common presence of these
factors in each of the subjects leads the researcher to believe
there may be a link with all of these issues to SLE. What seemed
obvious to the chronically ill was not obvious to the researcher and
might not be obvious to the lay person. Issues and beliefs related
to health, illness, and the ability of medical practitioners to deal
with illness in clear, decisive actions are not always accurate.
This sampling may be just a hint of some of the realities related to

illness, diagnosis, and treatment.

Chapter Summary

In each section of this chapter, the researcher attempted to
provide the reader with a different perspective of the data
regarding each of ‘the research subjects. Although no absolute
conclusions can be gained from such a limited sample, there seem to
be many subtle relationships and common experiences that were
reflected in the data.

The first section focused on the personal histories of each of
the subjects. The data were self-reported and might have a degree
of error due to the subjects’ ability to recall dates and

experiences in a clear and accurate manner. The common experiences

136

and expressions of concern helped provide a glimpse of what their
lives were like. .

The second section focused on the responses that were collected
from the RTL. The RTL provided a broad range of statements in
relation to issues related to the losses of illness and their
responses. The level of agreement in the areas of transformation
and self-empowerment was a strong affirmation of the common beliefs
and experiences shared by the subjects.

In the third section, the researcher attempted to connect some
of the common threads of data into a number of assertions. These
assertions were categorized into two major areas. These included
two major categories: original assertions and additional findings.
The additional findings included 11 new assertions. These new
assertions were broken down into four parts, all reflecting

different elements of the data and the review of literature.

CHAPTER V

IMPLICATIONS, DESIGN RECOMMENDATIONS, CONCLUSIONS,
AND CLOSING OBSERVATIONS

Implications

Throughout the interviews and reflected in the survey
information, a number of questions were raised that went beyond the
design of this study.

The following questions were raised in the surveys and
interviews and warrant consideration for further study. These
include the following:

1. How can the level of stress be reduced in SLE patients and
individuals with chronic illness who have symptoms that are very
difficult to diagnose?

2. Where can one find the social support in times of chronic
illness?

3. How effective are support groups for people with chronic
illness?

4. How helpful are support groups for family members who have
a loved one who has a chronic illness?

5. How can supportive environments be created for the
chronically ill in a society of growing structural changes in the

family and familial dysfunction?

137

138

6. What role does the use of vitamins play in bolstering the
response of the immune system?

7. What role do self-care activities like exercise, good
nutrition, meditation, and a strong prayer life have in affecting
the quality of life of people with chronic illness?

8. Is depression induced in people with chronic illness
because of a change in their physiology?

9. Is depression caused by the losses associated with chronic
illness?

10. What is the relationship between physiological changes and
losses related to depression for the chronic illness?

11. Can depression related to chronic illness be treated and
approached from a perspective of loss?

12. Can the sharing of the significant learnings that people
with chronic illness experience help people who are not ill live
more effective lives?

13. What is the relationship between an early history of severe
allergies and other autoimmune-related illnesses?

14. What role does one’s sensitivity to his/her environment
play in signaling the onset of immune-system diseases?

15. Are ‘there' environmental factors that stimulate the
development of immune-system diseases?

In summary, this research project has identified a number of
assertions related specifically to these six SLE patients that are

possibly transferable to other people with chronic illness. The

139

project also has implications for the researcher as a teacher and a
person. _

We live in an era of medical technology and pharmacological
approaches, one in which increased longevity and increased
incidences of immune-system-related problems are creating growing
populations of people 'with chronic illness. These demographic
changes, as identified in Chapter I, are increasing the need to

further examine questions related to chronic illness.

Design Recommendations

The format of this study permitted a great deal of in-depth
exploration into the life histories of a limited subject population
of six. A number of design factors may warrant examination if other
investigators undertake this kind of research in the future.

1. The sequence of the research could be improved if an
individual were asked to complete the Life Changes Inventory and the
Response to Loss Inventory before completing the Lifeline. It is
the researcher’s experience that the Lifeline’s function of
promoting a narrative might be improved.

2. The amount of data collected was voluminous. A wealth of
information was gathered. The indexing of statements and the cross-
referencing of information were very time consuming and difficult to
control. A comprehensive system of computerized information
management would be helpful for future research.

3. The depth of the interviews might be strengthened if an

individual were allowed to tell his/her life story uninterrupted,

140

using the Lifeline first. Once this initial interview was
completed, the interview could then be reviewed and questions
developed that. would focus on extrapolating consistent lines of
questioning and information collection.

4. Further studies might be valuable in helping people
identify some of the common issues that all people struggle with in
chronic illness. These factors might include depression, the
effects of chronic illness on relationships, the effects of
receiving unconditional love on remission and healing, the ability
to communicate one’s symptoms, isolation as a result of illness, and
transitions related to relationships during illness.

5. The focus of this study was on subjects who had had a
diagnosis of SLE for more than five years. The level of maturing of
these subjects had, related to their illness, was very high.
Further research related to the developmental issues surrounding
loss and chronic illness needs to be done. Many of the statements
made by the subjects and many of their actions reflected a high
level of personal transformation. How people who are newly
diagnosed with a chronic illness respond may be different and
important. Understanding these differences might help in the

development of treatments that are more developmentally appropriate.

Conclusions
The data produced by this research were very powerful. The
interviews, use of the RTL, Lifeline, and LCI all contributed to a

body of information that encapsulated the life stories of six people

141

who were living with SLE. The dysfunction, divorce, drug abuse, and
bulimia are all reflections and true microcosms of the societal
picture that was described in Chapter 1. Their lives mirrored many
of the issues related to chronic illness, stress, and coping that
were presented in Chapter II. It is these stories that have led to
the following conclusions. The conclusions are broken down into two
categories. Category 1 is related to concepts presented in the

review of literature. Category 2 focuses on additional observa-

tions.
Category 1

The literature discussed coping and loss, adjustment, and
illness. The key factors that contributed to coping and the
management of stress that were identified in the literature and are
reflected in these conclusions were as follows: (a) beliefs of the
subjects, (b) transformations related to losses, and (c) actions
taken by the subjects related to coping.

Conclusions related to beliefs. In the literature, a number of
elements were discussed about the relationship of people’s beliefs
to their ability to deal with their changing life positions. These
conclusions focused on the relationship of people’s beliefs, the

effects of their beliefs on their behavior, and how they coped.

142

l. A belief in a higher power beyond one’s self isaa source of

 

strength and energy.

"’God help me.’ I screamed, and immediately a peace came over
me that has been present in my life ever since." Similar statements
were echoed throughout the interviews about the presence of a higher
power in each of the subjects’ lives. Two subjects reflected a
strong belief in the presence of Christ in their lives. Two others
shared renewed spiritual awakening and a belief in a higher power.
All of the subjects reflected a belief in a higher order. What was
interesting was that, despite the chaos related to their illness or
relationships, their worlds reflected that they had order in their
lives. There were no questions concerning their belief or their
sense of order in the universe. The questions related to why they
had contracted SLE and why they were forced to endure their
transitions were no longer being asked.

Transformations related to losses. This section is a collec-
tion of some of the kinds of actions that occurred in the process of
managing their transitions. Some of these conclusions were a result
of individual transformations as they moved through their losses.

1. Clearapriorities create order. In reading these stories, a
consistent pattern arose. Despite the monumental problems, there
was a sense of order in each of these subjects’ lives. That order
seemed to be a result of a gradual transformative process, in which
each subject slowly eliminated those parts of her life that were no
longer important. As the subjects let go of their losses and

identified the important elements of their lives, they were able to

143

focus on and use their energy in ways they thought were positive.
This is not to say that their lives were not without chaos. In
those areas where choices existed, they were able to use their
energy to create some joy and order in their lives.

2. Letting go is a source of-power. The RTL reflected a
strong tendency on the part of each subject to let go of her anger
and the losses related to her illness. The group showed a high
transformative sense about their lives. They all acknowledged that
they were getting on with their lives, and their focus was positive.
Each person chose to volunteer for this research project with the
belief and intention that this work might help someone else. They
all could have chosen to "hold on to" their daily pain, losses, or
resentment for the way life has been played out to them, but they
did not. They made a different choice-—to "let go" and to use their
energy positively. The letting go seemed to provide them with a
source of energy. It allowed them to use the energy they had in
ways that empowered and freed each of them.

Actions taken by the subjects related to coping. This section
reflects actions that were taken by the research subjects that
helped them more effectively manage the stresses they encountered.
References to exercise, self-care, nutrition, and their own sensi-
tivities to their needs were identified.

1. Positive self-care can lead to more effective commitments.
SLE was described, both in the literature and the data, as an

illness that talks to you through your body. It sends messages in

144

the form of pain and fatigue. These messages are part of what
contributes to the lessons that illness teaches. For the_ SLE
patient, listening to these messages was critical. It was within
these limits that the researcher began to understand that if the SLE
patient did not acknowledge the pain and the fatigue and pushed
beyond a reasonable level, she was forced into a worsening of
symptoms or a "flare-up." Each subject reflected modifications in
her life style. They all rested more, some took vitamins or tried
to exercise as much as possible, and in general they kept their
relationships current. They did these things to help them meet
their personal and work commitments. They also did this because it
improved the quality of their lives. If these SLE patients did not
do this and did not take the time for themselves, they could not
have met their priorities. One subject said, "I have to listen to
my body because if I don’t, my body screams at me and I end up

praying out of fear."

Category 2

There seemed to be a number of other related observations that
were more difficult to pinpoint as to where they originated and how
they affected one’s ability to cope. The researcher believes these
understandings contribute to the hardiness of the individual.

1. Same events in life cannot be anticipated or plapmeg. An
alcoholic husband, a train wreck, a child who is addicted, a
miscarriage, a heart attack, an illness, a pain, a divorce, and

flowers that did not wilt were all parts of what made life unique

145

for each of the subjects, yet reflected unpredictability. The
chaotic world that confronted each of the subjects was a common
threat that was present at many levels, both in the data and in the
literature. Illness, loss, and despair are often like a thief in
the night. They appear without warning and provide each of us with
a set of circumstances we call life that is completely different and
previously unimaginable. These changes, many of which involve loss,
were a central part of each subject’s life.

2. ThereJHs:alwavs more than meets the eye. So often we never
really know the stories behind the people we live with and work next
to. Assumptions are made about many parts of their lives. We may
have little glimpses of who they are, but seldom are we allowed into
their private domains. Seldom do we really understand who they are
and what they are about. This cataloging of data provided the
researcher with a multitude of stories, each describing elements of
a subject’s life. Even with the intensity of these stories, it is
difficult to really comprehend the complete picture. Impressions
create a powerful mask from the realities of life. Marilyn was a
wonderful example. She was attractive, well dressed, 20, and a
college student seeking a degree in an allied health occupation.
Who could have really understood how much of her life had been
centered on illness and loss? Sarah’s story was vastly different,
but her experiences were very similar. Externally, she was very
jovial, happy, and caring. It seemed almost impossible that she
could have faced so many obstacles on her journey. All of the

subjects had their own stories. Their lives, like the lives of so

146

many, are much more complex than we can understand. This kind of
complexity was a common link that was reflected in all of the
subjects. Each profile validated how little we really know about
others. All of these subjects could have been a neighbor, a friend,
or a spouse to any one who reads this document.

3. Where there is commitment there i§ power. All of the

 

subjects had a multitude of reasons to give up--recurring muscle
pain, periods of immobility, organ involvement, central nervous
system problems, heart attacks, and more--but they did not. In each
case there was a commitment to something outside of themselves. It
might have been a spouse, a child, an education, or a desire to
learn. It did not seem to matter. Each was committed to something
she felt positive about. What mattered was they had commitments
that provided direction for their lives. The motivation to get out
of bed, to make a quilt, to face life and make it positive was
consistent. Teresa had two nearly fatal heart attacks and was
highly allergic to medical treatments. Two others experienced
recurring bouts with extended periods of forced bed rest of a month
or more. Yet they recovered. Each said it was her commitment to
something outside of herself that helped her move beyond her illness
and limitations. Mitchell (1991) shared this perspective: "When
one commits, strange and powerful things happen."

4. Whatayou focus on grows. If one pays attention to his/her
garden, what is cultivated usually grows and becomes plentiful.

Illness and, in particular, pain can cause one to change focus. It

147

can cause one to divert thoughts, especially positive thoughts of
life to thoughts of death. It can cause depression, apathy, and
hopelessness. None of the subjects reflected these kinds of
behaviors. Each had a focus. It may have been to grow
intellectually, help others, or be a model for their children. They
all had a focus beyond their own illnesses. Their focus was
positive and dynamic.

5. Live now. Each person had a sense of presence that was
very powerful. There was no doubt that they were highly focused.
No one looked back on their lives with longing. They had accepted
their past. They also did not project forward with any unfounded
hopefulness or denial. Each had a belief that her life would
continue to improve, but her focus was on now. Words like "when
this changes," "if only," and "life shouldn’t be this way" were not
used. With each meeting, the researcher sensed their whole
attention was focused on the task at hand. In his book Jonathan
Livingston Seagull, Bach (1972) summarized it this way:

If our friendship depends on things like space and time, then

when we finally overcome space and time, we’ve destroyed our

own brotherhood! But overcome space, and all we have left is

Here. Overcome time, and all we have left is Now. And in the

middle of Here and Now, don’t you think that we may see each

other once or twice? (p. 63)

In all the subjects’ interviews and stories, they were present and
focused. Their expressions and behaviors did not reflect urgency as
much as a state of being into the moment.

6. Love gap hea_l_. The subjects shared a number of stories

that demonstrated how unconditional love was experienced and how

148

that love changed their lives. A bulimic of 11 years started to eat
healthfully, an alcoholic husband could not emvision life without
his spouse and stopped drinking, a grandmother’s model of love gave
strength. It should be noted that the healing was not always
physical, but many times emotional or spiritual. The loving that
was experienced by each of the subjects made a key difference in
their lives. Where that love emanated from was not as important as
was its presence. Elizabeth Kubler-Ross (1968), founder of the
hospice movement, stated it this way: "Unconditional love can heal
anything."

There are very few certainties in life, short of death. Each
of these subjects was confronted with her mortality in ways that are
foreign to many of us. The reality is that death is equally present
for all of us. The only difference between these six subjects and
most people is that they were possibly aware of their mortality at a
greater depth. Yet they possess a zest for life that reflects

courage, optimism, and hope.

Closing Observations
This study gave the researcher a sense of some of the kinds of
issues and transitions SLE patients face daily. The subjects in
this study provided the writer with yet another possible model of
how one might live more closely to his/her potential as a human
being.
To some extent, this study also provided the researcher with a

sense of some of the issues that are faced by people with chronic

149

illness that he has not had. It is clear that each illness is
unique and that not all chronic illness can be put into one
generalized category. Obviously, even persons with SLE cannot be
singularly categorized due to the varied nature of this illness, the
individual’s stage of development, and the level of involvement that
a person may be encountering. Nonetheless, the experiences recorded
in this study might be useful to others who are facing transition.

This research also revealed the kinds of similar experiences
and perceptions that SLE patients have and provided the researcher
with a wealth of stories related to these transitions. The
subjects’ stories reflect how people who are faced with recurring
transitions can cope with loss, survive, and transform their lives
in positive ways.

The subjects’ stories were very common at some levels, and yet
at other levels they reflected a type of heroism that is seldom
discussed. Their heroism was demonstrated in how they faced the
physical and psychological unknown of chronic illness, how they
confronted their losses and pain daily, and how, despite these
obstacles, they were willing to share their stories with others.
All of the subjects showed a genuine concern and caring for others
by sharing their stories in the hope that someone else might
benefit. They seemed to have a special empathy for others who were
in the transitions of chronic illness, loss, and life in general.

The subjects shared stories about their challenges and their
obstacles that seldom are shared. These stories provided a glimpse

at a part of life many people do not encounter. The subjects also

150

shared a number of fears and concerns related to life and chronic
illness that most people do not take the opportunity to discuss.

More important, the participants shared a perspective that life
can still be joyous and meaningful, no matter where one is on the
continuum of physical health and illness. They demonstrated how
their own sense of self-responsibility could make a difference in
the quality of their experience. They further reflected how their
sense of spirituality and commitment to having meaningful
relationships had made a difference in their lives. Finally, they
shared how love had been a powerful source of strength and, in some
cases, healing for them.

Briefly in Chapter I, in the section on the Importance of the
Study, and to a much greater extent in the Review of Literature in
Chapter 11, many of the recurring themes of life in America for
people coping with chronic illness were reflected. Even though the
data certainly echoed models of coping with loss in great detail,
they went beyond the literature in providing intimate stories and
relationships on how people cope with loss.

As shown in this study, there is an ongoing need among
researchers, teachers, and lay people to establish a dialogue with
people who are chronically ill. This dialogue might provide an
opportunity to further understand the workings of the human spirit
and the ability to live in joy despite illness and personal tragedy.

Understanding the perspective of the chronically ill might well

151

provide a glimpse of life that can enrich one’s own life and help
people live closer to their potential.

The final implication is that the researcher, as a teacher of
stress management, has been given a set of stories that might help
provide models for future students regarding how others have

survived and embraced life during transition.

APPENDICES

APPENDIX A

THE LIFELINE

152

LIFELINE

Introduction:

The purpose of this exercise is to help you prepare for your interview. This tool
is designed to help you focus on meaningful transitions and major learning
experiences in your life. Do not hesitate to share other events or feelings
that are meaningful to you during this time even if they do not seem

especially significant but are important to you.

Directions: Please plan to take sufficient, uninterrupted, time to create your
lifeline. Beginning with your early childhood identify as many major and or .
meaningful experiences as you can. The measure of major or meaningful is to
be defined by you. You may use a calender and list events chronologically or
you may, through the use of stick figures, pictures or other types of drawings,
outline your experiences. Please use the paper provided. The lifeline is not
meant to be a detailed description of your experiences, but a tool by which we
can initiate a meaningful dialogue. A great deal of detail is not necessary.

(If you have journals, scrapbooks or other reflective works, art, short stories, and
or letters and are willing to share them please bring them to the first interview
along with your lifeline.)

APPENDIX B

TAPED INTERVIEW FORMAT

153

Interview Pregation and Format

1) Please prepue you Lifeline as outlined in the attached form.

2) Please bring any jounals, letters, scrapbooks or other materials that may help to
get a cleuer pictue of what you life looks like duing this period.

3) The interview will be informal.

4) Each interview will be taped to help captue the tansitions and that meaning as
accuately as podbie.

5) Please read over the (pestions attached so that you may be able to g've some
thougit to the flavor of the interview and anticipate some of you responses.
Addtional questions may evolve as a result of you responses.

Sample Quesb'ons:

1) Please describe you life for this period of time (use you own lifeline).

2) What have been the most significant events for you 7

3) Were there any specific events that were paticululy stressful for you thing this
period?

4) Did any illness follow these stressful events?

5) Througi you illness transitions. what helped you the most throudi these dfficult
times?

6) Please explain in as much detail as possible how you confront these transifions?
What do you say to youself?

7) Has you self-talk changed a goat deal over the yous?

8) Do you have any scrapbooks, iounals or other materials that may help to
understand what you life was like duing this time of you life?

9) Please go over them with mel

APPENDIX C

THE LIFE CHANGES INVENTORY

154

[191111513 @1114“ (4:156 HEW-1703311?

eJohn Schneider. Ph.D.

 

NAME or CODE-
DATE: AGE;— SEX:__
LIVING ARRANGEMENTS):
ALONE; WITH SPOUSE .__WITH CHILDREN
WITH PARENTS—
WITH OTHERS—

 

The following is a list of changes which people can experience
throughout their lives. These may include one or more which you have
experienced. You are to 1) identify significant changes and to 2) rate their
current impact on you.

First, select a change event which you have experienced. In the blank
next to the item. indicate how long ago this event occurred (e.g. 6 mos: 10
yrs). Identify as many as apply to you.

Second. please rate each item you have checked with a number
between -5 and +5. according to the following guidelines:

- 5 - this event is risthsm the most negative or equal to the most
negative I've ever experienced.

0 - this event is neither positive nor negative W

+5 - this event is eurrentiy the most positive experience or equal to
the most positive experience in my life.

All information on this rating scale wil be kept confidential. Please use
a code name if you wish to insure your anonymity.

Examples: Rate : (Circle)

How long? Negative Positive

__ 19. 06- decreased drug use -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
19. 07- increased smoking -5 -4 -3 -2 -l 0 +1 +2 +3 +4 +5

2111:. 19.08- decreased smoking -5 -+1 -3 -2 -l 0 +1 +2 +3 +4 +5

641193. 19. 09- increased drinking -5 -4 -3 -2 -l 0 +1 +2 +3 +4 +5

155

EXTERNAL CHANGES

0 = Changes in relationships with spouse/significant other

How long ago? Rate (circle)
(mos.lyrs.) Negative Positive
__ 0.011‘a11inginlove -5 -4 -3 +2 --1 0+l+2 +3 +4 +5
__ 0.02 marriage/public commitment ‘
-5 -4 -3 -2 +10 +1 +2 +3 +4 +5

__ 0.03 death of a partner -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
__ 0.04 divorce -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
__ 0.05 separation -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
_ 0.06 prolonged absence -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
__ 0.07 reconciliation -5 -4 -3 -2 -l 0 +1 +2 +3 +4 +5
__ 0.08 betrayal of trust -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
_ 0.09 changes due to partner's way of dealing with loss/grief

‘ -5-4-3-2-10+1+2+3+4+5
__ 0.10marita1 conflict -5 -4 +3 -2 -l 0 +1 +2 +3 +4 +5
/ = [055 of a child-
How long ago? Negative Positive

1.01 death:

_ 1.011 due to illness -5 -4 -3 -2 -l 0 +1 +2 +3 +4 +5
1.012 due to injury -5 -4 +3 -2 -1 0 +1 +2 +3 +4 +5
1.013 due to murder

 

-5 -4 -3 -2 -10 +1 +2 +3 +4 +5
__ 1.014SIDS -5 -4 -3 -2 -l 0+l+2 +3 +4 +5
__ 1.02 miscarriage -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
__ 1.03 abortion -5 -4 -3 -2 +1 0 +1 +2 +3 +4 +5
__ 1.04 kidnapping -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
_ 1.05 disappearance -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
_ 1.06 placed for adoption -5 -4 -3 -2 -l 0 +1 +2 +3 +4 +5
__ 1.07 runaway -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
__ 1.08 imprisonment -5 -4 -3 -2 -1 0 +1 +2 +3 +4 +5
__ 1.09 other: please elaborate:
-5 -4 -3 -2 -10 +1 +2 +3 +4 +5

156

2 = Other changes in relationships with our children.-

How long ago? Negative Positive

_ 2.01birth +5 +4 +3 +2+1 0+l+2 +3 +46
_ 2.02 starting child care +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
_ 2.03 starting school +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

2.04 moving (as a family)

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
2.05 child leaving home

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
2.06 child's illness/disability

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
2.07 adult child living at home (returning)

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
2.08 becoming a single parent

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
2.09 loss/limitation of visitation rights

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
2.10 alienation +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
2.11 problems among children

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
2.12 problems with stepchildren

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
2.13 Other:

 

+5 +4 +3 +2 +1 0+1 +2 +3 +4 +5

157

3 = Change involving parents

How long ago?

4 = Changes involving hrothers and sisters/close relatives:

How long ago?

Negative Positive
3.01 parent death +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
3.02 leaving parent's home

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
3.03 change in custody +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
3.04 reconciliation of parents with each other

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
3.05 being disowned/alienated , .

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
3.06 returning to live at home

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
3.07 change due to parental separation or divorce

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
3.08 parental illness +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
3.09 reconciliation with one or both parents

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
3.10 parental remarriage +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
3.11 relation with step parent

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
3.12 relations with step siblings

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

Negative Positive
4.01 death of a sibling/relative (specifiy relationship)
-5 -4 -3 -2-1 0+1 +2 +3 +4+5

 

4.02 loss of contact +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
4.03 living with sibling +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
4.04 estrangement from siblings/family members

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
4.05 reconciliation with siblings/family members

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

4.06 sibling problems (e.g. divorce. bankruptcy. imprisonment)

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

4.07 death of grandparent/great grandparent
, +5-4-3-‘2-10+l+2+3+4+5
4.08 death of grandchild +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

158

5 = Changes involving friends

How long ago?

Negative Positive
5.01 friend's death +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
5.02 betrayal of friendship

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
5.03 moving +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
5.04 new relationships interfering

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

5.05 estrangement +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

6 = Other external losses or changes.-

How long ago?

Negative Positive
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

6.01 loss of a pet
6.02 loss of home
6.03 moving
6.031 within the same community
-5 +4 +3 +2 +1
6.032 within 250 miles
+5 +4 +3 +2 +1
6.033 within the same country
-5 +4 +3 +2 +1
6.034 to a new country
-5 +4 +3 +2 +1
6.035 to better acoomodations
+5 +4 +3 +2 +1
6.036 to worse acoomodations
+5 +4 +3 +2 +1
6.037 eviction/foreclosure
+5 +4 +3 +2 +1
6.04 loss of favorite mementos/ photos
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
6.05 leaving homeland/culture/ethnic background
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
6.06 unable to use native language
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
6.07 living in unfamiliar/dangerous environment
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
6.08 natural disaster (e.g. tornado. flood, drought)
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

0+1 +2 +3 +4 +5
0+1 +2 +3 +4 +5
0+1 +2 +3 +4 +5
0+1 +2 +3 “16
0+1 +2 +3 +4 +5
0+1 +2 +3 +4+5

0+1+2+3+4+S

159

7 -- Other external losses (please specify)

How long ago? Negative Positive

_ 7.01 -

 

-5-4-3-2-10+1+2+3+4+5

 

_ 7.02 - .
+5 +4 +3 +2 +1 0+1 +2 +3 +4 +5
_ 7.03 " +5 +4 +3 +2 +1 0+1 +2 +3 +4 +5

Comments on external changes in your life:

160

INTERNAL LOSSES [CHANGES
IO = Changes due to traumatic experiences

How long ago? Rate (circle)
(mos.lyrs.) Negative Positive

10.01 being imprisoned +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
10.02 being abused +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
10.03 political torture +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
10.04 being in combat +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
10.05 rape +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
10.06 witnessing a murder or rape

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
10.07 injuring/killing someone accidentally

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
10.08 injuring/killing someone deliberately

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
10.09 victim of prejudice +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
10.10 victim of neglect +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

1 l = my own life threatening or chronic illness/condition

 

How long ago? Negative Positive
__ 11.01 AIDS (HIV positive)

+5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
__ 11.02 Cancer/Leukemia +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
_ 11.03 Heart condition +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
_ 11.04 Chroniclung +5 +4 +3 +2 +1 0+1+2 +3 +4 +5
_ 11.05 Diabetes +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
__ 11.06 Multiple Sclerosis +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
_ 11.07 Lupus +5 +4 +3 +2+1 0+1 +2 +3 +4 +5
_ 11.08 Environmental Illness .

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
_ 11.09 Cystic Fibrosis +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
_ 11.10 Huntington's w +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
__ 11.11 Other:

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

161

12 = joh related changes.-

How long ago? Negative Positive
_ 12.01beingfired +5 +4 +3 +2-1 0+1+2 +3 +4+5'
_ 12.02 retirement +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
_. 12.03 promotion +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
_ 12.04 being hired +5 +4 +3 +2 +1 0+1+2 +3 +4 +5
__ 12.05 reassigned +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
_ 12.06 demoted +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
_ 12.07 being passed over for promotion

+5- - - +10+1+2+3+4+S

(”DJ
NM

4
12.08 responsibilities curtailed
-5 -4
12.09 responsibilities increased
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
12.10 work lost its meaning or significance
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
12.11 work gained meaning or significance
+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

+1 0+1 +2 +3 +4 +5

13 = loss of physical function or ahility to work due to.-

How long ago? Negative Positive

_ 13.01 injury +5 +4 +3 +2+1 0+1 +2 +3 +4 +5
__ 13.02 illness +5 +4 +3 +2'-1 0 +1 +2 +3 +4 +5
__ 13.03 accident +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

13.04 treatment (e.g. drugs. surgery)

-5 -4 -3 -2-1 0+1 +2 +3 +4+5
13.05 aging +5 +4 +3 +2 +1 0+1 +2 +3 +4 +5
13.06 disability (e.g. hearing, sight impaired)

+5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

14 = l ass of sexual function/attractiveness due to.-

__ 14.011njury +5 +4 +3 +2+1 0+1+2 +3 +4+5
__ 14.02 illness +5 +4 +3 +2+l 0+1 +2 +3 +4 +5
__ 14.03 accident +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

14.04 treatment (e.g. drugs. surgery)

14.06 disability (e.g. hearing

5 4
14.05 aging +5 +4 +
S
5

162

I5 = l 055 Of mental functioning due to

How long ago?

Negative Positive
15.01 injury +5 +4 +3 +2 +1 0+1 +2 +3 +4 +5
15.02 illness +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
15.03 accident/trauma +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

15.04 treatment (e.g. drugs, surgery)

16 = Pain

How long ago?

. +5+4+3+2+10+1+2+3+4+5
15.05 aging +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
15.06 disability +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

Negative Positive

16.01 long lasting pain (more than six months)

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
16.02 effective control of long lasting pain

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
16.03 resolution with long lasting pain

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
16.04 ending of long lasting pain

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

l 7 = Financial changes:

How long ago?

Negative Positive
17.01 significant indebtedness

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
17.02 winning the lottery (more than 10,000)

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
17.03 declaring bankruptcy

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
17.04 significant increase in salary/income

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
17.05 significant decrease in salary/income

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
17.06 living on a fixed income

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

163

IO = change in status or prestige-

How long ago? Negative Positive

18.01 graduation +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
18.02 becoming famous (award. publication, etc.)

-5-4-3-z-10+1+2+3+4+5 ,
18.03 being arrested +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5 _
18.04 publically"1osing f ace" '
+4 +3 -2 ~10 +1 +2 +3 +4 +5
18.05 winning a lawsuit +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

3
e

M

18.06 losing a lawsuit +5 +4 + +2 +1 0 +1 +2 +3 +4 +5
18.07 being cleared (exonerat d) of an accusation
4 2+10+1+2+3+4+5
1808 being convicted +5 +4 + +2 +1 0 +1 +2 +3 +4 +5
18.09 entering a religious life style

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
18.10 leaving a religious life style or cult

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
18.11 Other:

 

-5-4-3-2-10+1+2+3+4+5

164

I 9 = change in health hahits (forWflmoathslfi

How long ago? Negative Positive

19.01 increased exercise (by more than 3 hours/week)

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
19.02 decreased exercise (by more than 3 hours/week)

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
19.03 increased chances to relax (by more than 3 times/week)

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
19.04 decreased opportunities to relax (by more than 3 times/week) '

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
19.05 increased use of street drugs

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
19.06 increased use of prescription drugs

+5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5_
19.07 decreased use of street drugs

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
19.08 decreased use of prescribed drugs

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
19.07 increased smoking +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
19.08 decreased smoking-5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
19.09 increased drinking +5 +4 3 2 +1 0 +1 +2 +3 +4 +5
19.10 decreased drinking-5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5
19.11 weightgain +5 +4 +3 +2 +1 0+1 +2 +3 +4 +5
19.12 weight loss +5 +4 +3 +2 +1 0 +1 +2 +3 +4 +5

20 = changes due to treatment

How long ago? Negative Positive
__ 20.01 counseling or psychotherapy

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
20.02 prescription drugs

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
20.03 being adopted/placed in foster care

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5
20.04 being hospitalized

+5 +4 +3 +2 +10 +1 +2 +3 +4 +5

165

2/ = other internal (self) losses: Please elahorate
How long ago? Negative Positive

_ 21.01

 

-5 +4 -3 -2-1 0+1 +2 +3 «1+5
_ 21.02

 

+5 +4 +3 +2 +1 0+1 +2 +3 +4 +5

Comments on internal changes:

11116189 ims

APPENDIX D

THE RESPONSE TO LOSS INVENTORY

«I
19h:

r
0

r a.
.04

166

[RESPONSE m [Loss
, «Toma.»

T+0k1n RT 1 viu +.a.ano_+. N 'no 01+ 19+ ‘
‘ 0.‘ u ' 0.0‘) 0.10.1.- a_r
10+. ‘1 no +11‘.11,r+. 1‘ I“-

Copyright 1988
John Schneider &

Diane Deutsch
Revised 17 September 1990

I)

167

RESPONSE TO LOSS (RTL)
Questionnaire Instruction
copyright Schneider-Deutsch

This is an inventory of ways people respond to losses in their lives.
All of the questions reflect the normal process of grieving, although, of
course, none of us reacts in all of these ways to any given loss. Responding
to this Inventory may help you identify your current reactions to significant.
changes in your life, particularly losses. You may find responding to this
questionnaire difficult because some questions may bring up memories or
feelings which are painful. Ygu may as; wish :9 finish this invsntory. You
are not required to do so.

0 Since this inventory asks you on/y how you are domg right now. you
may find that you have changed from how you would have responded even a
few days or a few months ago.

c It might be helpful to discuss your reactions with someone. You are
invited to record your thoughts about taking the inventory at the end of your
answer sheets.

0 When possible, respond to only one particular loss or change in your
life. The "Lif e Change Inventory" may have already helped you to select your
most recent and/or most significant loss. Please note in the answer booklet
which loss it is that you are considering.

c When it is not possible to focus on a single loss, please indicate a_l_l
the losses Which were involved in your response.

0 As you read each question, ask yourself if the statement is true
about you WW. You can indicate the
degree to which you are having these responses according to the following
scheme:

1 = this isn 't true aoout my current response to this loss

2 = occasionally this is true about my responses to this /oss

3= some of the time this is true about my responses to this ioss.
4= most of the time this is true ahout my respons ses to this loss
5+ this definitely is true aoout my current responses to this loss.

NOTE: if a statement is true about you, but is not a response to the
loss, leave it blank.

Please respond to all questions, even if you leave some of them blank.
You may find it helpful to take one or more breaks while you are filling out
the questionnaire. It does not need to be filled out in one day, but within a
few days. If the loss you are considering has occurred recently, or if filling
out these items provokes strong feelings, you may postpone filling out this
Questionnaire.

168

The loss I am considering is (check one):

00 = my own life-threatening illness or condition

Ol + death of a partner/spouse

02 + death of a child/

03 = death of a grandchild

04 = death of a parent

05 = death of a grandparent

06 = death of a friend

07 = death of a brother or sister

08 = loss of job (e.g., being fired, quitting, retirement)

09 = loss of partner/spouse other than by death (e.g. divorce, separation,
severe conflict, prolonged absence)

10 = loss of health

1 l = loss of home, homeland, culture (e.g., moving, war, intolerance, etc)

12 = financial loss (e.g., bankruptcy, foreclosure, business failure)

l3 = loss of freedom (e.g., arrest, imprisonment)

14 = loss of parents other than through death ( e.g., moving from home,
being disowned, estrangement, conflicts, their divorce, separation)

15 = 1053 of children otherthan through death (e.g., their moving out of the
home, illness, adoption, loss of visitation rights)

16 = loss of self due to traumatic experience(s) (e.g. accident, crime, war, _
natural disaster, rape, incest)

l7 = other loss(es): Choose from the Life Change Inventory. Please specify
on the answer sheet.

18 = Multiple losses. Please indicate all of the above losses which apply:

 

Mark your answers on the answer sheet provided with this questionnaire.
1 = this isn 't true about my current response to this loss

2 = occasional/y this is true about my responses to this loss.

3 = some of the time this is true about my responses to this /oss.

4 = most of the time this is true about my responses to this loss

5 = this def inite/y is true about my current responses to this loss
NOTE: If a statement is true about you, but is not a response to the loss.

leave it blank.

169

l-IlOllllllB 011
In the time since my loss, .

l. I find myself talking or acting as If nothing has changed.

2. Keeping active and busy helps me feel less anxious about this loss.

3. I look at reminders of my loss (e.g. pictures, mementoes).

4. I would do almost anything to get back what I've lost.

5. I am smoking more.

6. I keep busy to avoid thinking about what happened.

7. I want/need to tell others what happened.

8. Taking care of others distracts me from thinking about my loss.

9. I've been the one to make the necessary decisions.

10. Until it is proven to be beyond any doubt that this loss is real. I will
keep looking for it/him/her.

I l. I look just as good as I always do.

I2. I go over the loss in my mind, trying to figure out how things could
have been different.

13. I try to figure out why this loss happened to me.

14. This whole thing seems unreal.

15. Almost anything can remind me of my loss.

16. I think I am responsible for this loss.

17. I don't believe that this loss really happened.

18. Something could have been done to prevent this loss.

19. I think that if I am good or perfect enough, what was lost will
return.

20. I wish things were the way they were before this loss occurred.

21. I keep thinking something could be done to bring back what I lost.

22. If I could just find the reason this loss happened, I wouldn't feel so
bad about it.

23. If I tried hard enough, I can bring back what I lost.

24. I hope that I am dreaming and I'll wake up and find out it never
happened. '

25. I feel that I should have done something to prevent this from
happening.

26. I am angry about this loss.

29. I'm scared to share what I've been thinking, feeling and doing.

30. I'm not sure I trust the feelings I have about what I did and/or didn't do
just before the loss happened.

31. I feel guilty or disloyal when I forget about this loss.

32. My feelings are so intense I'm afraid I'm losing control.

33. I want someone to be punished for this loss.

34. I feel guilty just thinking about enjoying myself.

170

In the time since my loss,

35. Being in control helps me feel less overwhelmed.

36. I am afraid to think about anything else but my loss.

37. I'm afraid I'll forget my loss if I stop thinking about it.

38. I can't control my feelings when I'm with those who share my loss.

39. Unless something happens soon to change this, I don't know if I can
control my feelings.

40. I try to hold back the tears.

41 My feelings are so unpredictable I wonder if I am crazy.

42. I' m not ready to let go of my feelings about what happen.

43. I dream that it never happened.

44 I' ve increased my exercise.

45. I ignore the physical pain just to keep going.

46. I dream that something has happened to reverse my loss.

47. I have lost weight.

48. Sex gets my mind off the loss.

49. It's obvious to others I've been upset.

50. I am sleeping less.

51. I don't eat as much.

Because of this loss,

52. It would help if someone. could help me understand this.

53. Life seems unfair.

54. There are times when it feels like I am going through this same thing all
over again.

55. I am not able to forgive those who contributed to this loss.

56. I wonder If I really deserve What I have.

57. I believe that if people could just love each other, no one would really
have to suffer.

58. I won't give up.

59. I won't accept that this loss has happened.

60. I am determined to make those responsible pay for this.

61. I'm looking for a way out of this loss.

62. This loss must be changed.

63. I believe something good will happen.

NOTE: If a statement is true about you, but is not a response to the loss,
leave it blank.

171

ILIET'II'IIIIB 150)
Since this loss happened,
I. I avoid telling anyone what I'm thinking, feeling and/or doing.
2. I avoid people who remind me of this experience.
3. I've been careless.
4. I have kept secret what really happened.
5. I act as though this doesn’t really matter to me.
6. I drink to forget my loss.
7. I‘ve put away anything which could remind me of this loss.
8. I avoid reminders of this loss.
9. I use drugs to forget my loss.
10. I'm less patient with people.
i l. I don't see much of my old friends.
12. I don't spend as much time with my family.
I3. I avoid getting involved in anything.
14. I refuse to discuss this loss.
I5. I can be physically abusive when others remind me of the loss.
16. I can be verbally abusive when others remind me of this loss.
I7. I lose or misplace things which are related to this loss.
Since the time of this loss, I have thought
18. Something else is going to go wrong.
I9. It's easier when I can forget what happened.
20. This loss is evidence that I have failed as a person.
21. If I get too happy, something bad is bound to happen.
22. If I don't look out for myself, no one else will.
23. I deserve a better deal than I'm getting.
24. I can think of very few people worth my time and energy now.
25. That I'm better off without It/him/her.
26. No one can change what's already happened.
27. No matter what I do, what will happen will happen.
28. Even If I could understand why it happened, it wouldn't change anything.
29. It's best not to dwell on the past.
30. I cannot Imagine how anything positive could come out of this loss.
In the time since this loss,
31. I feel confused and disoriented.
32. I feel detached and separate from others.
33. I feel dissatisfied with everything.
34. I feel overwhelmed.
35. People irritate me.
36. I get angry at myself.
37. I am scared by how unpredictable my feelings are.
38. I feel frustrated.
39. If I let myself, I get so unhappy I can't stand it.

172

In the time since this loss,

40. I get upset with myself for the way I have behaved.

41. I'm fed up with spending so much time on this.

42. I'm ashamed of the way I've behaved.

43. I feel bored with life.

44. I am revolted by the way people have responded.

45. It disgusts me to think of how It happened.

46. I avoid feeling too sad about this.

47. I try not to let anything affect me.

48. I refuse to wallow In self— pity.

49.1 deserve to be punished for what I contributed to this loss.

50. I am less interested in sex.

51. I don't want to be touched.

52 I get hurt more.

53. I dream that I destroyed what/who I lost.

54. I am sick a lot.

55. I'm gaining weight.

56. I don‘t remembered any dreams.

57. I exercise less

58. I'm more clumsy and accident prone.

59. I sleep more.

60. I don't watch what I eat.

61. I wish I could be saved from having to deal with this experience.

62. I doubt that anything or anyone can give my life meaning again.

63. It's hard for me to trust anybody.

64. Nothing has really made any difference, so why do I bother?

65. Nobody cares how I am doing.

66. I wonder what point there is in going on.

67. I've lost respect for myself.

68. I can't imagine anyone ever being as Important to me.

69. I've given up believing that my life has any particular Significance.

70. My life doesn't seem to have a purpose.

71. I've had fantasies of being dead.

72. I wonder If I'm really a disgusting, worthless person.

73. There’s no sense thinking or worrying about what happened.

74. I've realized that nothing could have prevented it.

75. I lack the energy to make sense out of it.

76. If people important to me knew my contribution to this loss, they would
be shocked.

77. No one could ever pay enough for causing this loss to happen.

NOTE: If a statement is true about you, but ls no.1. a response to the loss,
leave it blank.

173
AWAHIEIESS

Since the time of this loss,

I. It's been hard to concentrate.

2. I am less confident.

3. I've not been Interested In meeting anyone new.

4. I have very little to say.

5. I've had no energy to do anything.

6. I get so preoccupied that I forget where I am going.

7. I avoid being alone.

8. I avoid getting close to others.

9. I lack love, affection and companionship.

10. I do less of the things I enjoyed before.

1 I. My friends have been avoiding me.

I2. It's hard for me to make decisions.

13. I've lost friends.

14. My friends avoid talking about my loss.

15. I avoid being in new situations.

16. I forget to do routine, everyday tasks.

I7. I talk about how it's been for me since the time of this loss.
When I think about this loss,

18. I am scattered and ineffective.

I9. I am unable to find anything to look forward to.

20. My thinking has been slower than usual.

21. I can't Imagine how things will get better.

22. It seems hopeleSs to try to understand what really happened.
23. I'm struck by how trivial everyday life seems.

24. I'm reminded how little I really control.

25. I am overwhelmed at how real and inescapable this loss seems.
26. There’s no way I can fully understand why It happened.

27. I think about how my life has been changed.

28. I am aware of what is no longer a part of my life.

29. remember what happened as clearly as If It happened yesterday.
30. I forget how it used to be before this happened.

31. I know I cannot bring It back.

32. I think about what's missing in my life.

33. I think about the dreams that will never come true.

34. I lose track of what's going on.

35. I'm struck by how other people seem to go on with their lives while I

cannot

174

Because of this loss,

36.
37.
38.

I feel empty, like a shell, like I am just existing.
I feel lonely and alone.
I long for what (whom) I've lost.

39. The tears are hard to stop.

40.
41 .
42.
43.
44.
45.
46.
47.
48.
49.
SO.

I miss expressing my love.

It's hard to express what I feel in words.

I cry.

I feel like I would rather die than go on experiencing this.
Being In certain places can unexpectedly stir up feelings.
Ifeelpangs.

I feel numb.

I feel .a great deal of hurt or emotional pain.

Ifeelsad.

I am at the lowest point I have ever been.

I really miss it/him/her.

51. Music can stir up my feelings.
52. Looking at old photos stirs up painful feelings.

53.
54.

Certain odors (e.g. perfumes, old houses) can trigger feelings.
I feel helpless.

55. My feelings just come. '

56.

I miss feeling happy.

57. Joy is missing in my life.

58.
59.
60.

I feel restless.
Ifeeltense.
I am exhausted by any effort.

61. My body feels heavy.

62.
63.
64.
65.
66.
67.
68.
69.
70.
71 .
72.
73.
74.

i wake up during the night.

I am more tired than usual.

I sigh.

I don't know if I can stand the physical pain for one more day.
I wake up feeling stiff and achy, as if I'd been tense all night.
I have difficulty getting to sleep.

It's like I've been hit In the stomach

I lack a sex life.

When someone touches me, my feelings come to the surface.

I have trouble getting up in the morning.

I feel sick.

I feel tight in my throat, like there is a lump in it.

I use up much more energy than I did before.

75. My stomach really churns.

76.
77.

I hurt all over.
I lack touching, holding and hugging.

175

Because of this loss,

78. I never seem to know what to do with myself.

79. My dreams remind me of my 1033.

80. I have aches and pains which remind me of my loss.

8 I. The future seems empty.

82. It is easier to realize that someday I will die.

83. Everything else seems trivial and meaningless.

84. I've lost my fear of dying.

85. There Is nothing positive or redeeming about this loss.

86. My beliefs don't give me the comfort they use to give me.

87. My faith has been shaken.

88. It seems like I have lost my desire to live.

89. I cannot continue life the same way as before.

90. I question the existence of the God I used to believe in.

91. I've realized that my life will never be completely free from pain and
suffering.

92. My belief in myself as a basically good and honest human being has been
shaken.

93. There Is a great emptiness in my life.

94. I realize how fragile life is.

95. I've lost my sense of innocence.

96. I don't have the kind of love I had.

97. What I value most in life has been destroyed.

98. When I'm convinced things can't get any worse, they do.

99. No amount of money could ever replace my loss.

100. There are parts of me that are missing.

lOl. I am not the loving, caring, trusting person I was.

l02. I know I will lose things and people important to me.

NOTE: If a statement is true about you, but is n_ot a response to the loss,
leave it blank.

176
[PERSPECTIVE

In the time since this loss,

1. Hearing about other 5 experiences With Similar losses helps.

2. Being by myself has been healing.

3. Telling or writing my story about this experience gives me a
feeling of relief and release.

4. It's easier to let myself just experience this loss.

5. It helps to be with a friend who accepts me as I am.

6. I like to be with friends who know what I've been through.

7. I take long walks and just daydream.

8. There Is at least one person I can count on for support.

9. I've found ways to enjoy myself.

I0. There is a special place which is healing for me.

I 1. Activities like getting a massage, painting or music are soothing.

12. It helps when I don't have anything to do.

13. I think about the effects of this loss; how I have changed, what. is
different.

14. I can take what comes.

15. I‘ realize that I've lost a lot, but I haven't lost everything.

l6. There are some things I will never understand about this.

I7. I‘m not as responsible as I thought I was for what happened.

18. I wasn't the only one who contributed to this loss.

19. I can think about other things than this loss now.

20. My Imagination has returned.

21. I can let things turn out the way they will.

22. What I have left in my life is enough to keep me going.

In light of this loss,

23. My feelings make sense when I think about them.

24.1 don' t need to struggle to accept what has happened.

25. I still hurt, but the pain has lessened.

26. My feelings still catch me by surprise, but they don't last as long.

27. My guilt has lessened.

28. I'm not so sad.

29. I am able to express my feelings about the loss.

30. My feelings of anger are not as strong anymore.

31. My feelings can be ones of "sweet sadness".

32. My disgust over what happened has lessened.

33. My fears about dying are less.

34. I have already passed the loWest point.

35. It feels good to be able to laugh again.

36. I can enjoy simple pleasures of life again.

37. My body is healing from the stresses of this experience.

177

In light of this loss,

38. The aches and pains I used to have with this loss have lessened.

39. I notice how things smell and taste again.

40 I m able to relax.

4l. I enjoy being touched and held once again.

42. My dreams seem to help me understand and accept what happen.

43. I am more aware of myself physically than I was before the loss.

44. My energy level has improved since the time of the loss.

45. It takes less energy to do things than It used to.

46. I realize that sadness and peacefulness can co-exist.

47. Someone or something powerful and loving has helped me make it this
far.

48. I have learned to accept that losses and changes are a part of life.

49. I believe there is some good in every person.

50. My faith, religious beliefs or spiritual understanding helped me with
this experience.

51. Something good could come out of this.

52. My life will continue.

53. My life does seem to have meaning.

54. No one is really to blame for what happened.

55. Life seems more fragile and precious.

56. I've decided to go on living.

57. My past will always be a part of me.

58. There are quiet places in my life now.

59. Whatever I contributed to this loss, I did not want It to happen.

60. What I've lost will always have a place In my life.

61. There are limits on what I lost.

62. A part of me Will always be connected to what/who I lost.

63. The fond memories are there along with the painful ones.

NOTE: If a statement Is true about you, but is not a response to the loss,
leave It blank.

178

fll'll'lEGlA'fl'lllI 'II’IHIIE [1.033

In the times since this loss,

I. At least one person knows that I've forgiven myself.

2. I've found ways to get back my integrity.

3. I've changed.

4. I've experienced this loss in ways that were healing.

5. I've said good-by to my loss.

6. I've taken steps to forgive those involved.

7. I've remembered what I really want to remember about it.

8. I've done everything I can do right now about this loss.

9. I don‘t depend as much on others. '

10. I've finished things related to my loss as completely as I can.
I 1. I've restored relationships which were disrupted by it.
In light of this loss,

12. I realize how important it is to say good-by to what's (who's) gone.
13. My life has more to it.

14. I knbw my life Is important.

15. l have as good an understanding as I can right now.

16. I understand why it's Important to have times of celebration and

remembrance before It's too late.

17. This experience has meaning for me.

18. I don't need to be so much in control of things.

19. There are ways that I have both gained and lost.

20. Putting my thoughts Into words has helped me recover.
In the time since this loss,

21. I've felt all I can feel about this loss.

22. I no longer feel shame.

23. I've let go of the guilt.

24. I‘ve let go of my sadness.

25. I've let go of the anger.

26. I no longer feel disgust.

27. I've had many feelings.

28. I‘ve experienced the loss as fully as I can.

29. I've found effective ways to express my feelings.

30. I like being with people again.

31. I've learned a lot from my feelings about this loss.

32. I can make sense out of the messages from my body.

33. I have the energy I need.

34. I relax.

35. I don't neglect my body.

36. I sleep well.

37. I eat sensibly.

179

38. I don't push my body beyond limits.

39. I exercise.

40. I can be sexually or romantically Interested.

4l. I feel better.

42 I take care of the way I look.

43. My dreams are restful, playful and helpful.

44. I feel confident enough in myself to move on to other things.

45. I have forgiven myself for what happened.

46. It's time for me to get on with life. ,

47. This loss has opened me to bonds of love and friendship with at least one
person. ‘

48. I have been forgiven for what I contributed to this loss.

49. I have forgiven others for what happened.

50. I would not reverse this loss if it meant giving up my growth from it.

5 1. I've made peace with those involved in this loss.

52. Some of my dreams have survived this loss.

53. I am finding ways to fit this experience Into the rest of my life.

54. Life Is worth living again.

55. I've restored or regained part of what I had lost.

56 I feel the presence of what/who I lost.

NOTE: If a statement is true about you, but Is not a response to the loss,
leave It blank.

180

SELF-EMPOWEIIHIET (HIEFOHMLNI'WI)

As a result of this _ loss,

I

2
3
4
S.
6
7
8
9.

IO.
11.

12.
l 3.
14.
IS.
16.
I 7.
18.
I9.
20.
21.
22.

23.
24.

' 25.
- 26.
‘ 27.
28.
29.
30.
31.
32.
33.
34.
35.
36.
37.
38.
39.

. I'm more self-disciplined.

. I enjoy being alone.

. I discovered what I want In life.
. I can laugh at myself.

I'm more assertive.

. I've started new relationships.
. I'm able to take risks again.
. I am more able to give to others.

I can take care of me and take care of others.

It takes less effort and thought to do what I need to do.
I do things on the spur of the moment.

Music has become very healing.

I like being challenged.

I spend time by myself.

I'm nicer to myself.

I'm not as serious a person.

I feel more confident.

I'm more creative In my approach to life.

I feel challenged to keep on going.

I enjoy dreaming as much as I do reaching for them.
I've changed in ways that would not have happened otherwise.
I' m more patient.

Ive grown.

I see the past as just as important as what Is happening now.
I don't spend as much time thinking about the loss.

I've realized that I can do destructive things.

Past, present and future are equally important.

I trust my ways of thinking.

I know what I need to do to move my life forward.

I am curious about a lot of things.

I feel like a whole person.

I feel loving and affectionate.

I've learned to respect myself.

I am not as hard on myself when I make mistakes.

I don't avoid admitting what I feel.

I am at peace.

I can feel both joyful and sad.

My feelings are valid.

Sadness reminds me how important this loss was to me.

181

As a result of this loss,

40. I can get angry.

41. It's hard for me to be bored.

42. I've found new ways to express my feelings.

43. I like the way I am.

44. I listen to what my body tells me.

45. I am efficient and creative at doing things.

46. I enjoy the Intimacy, closeness and pleasure of making love.

47. I feel strong.

48. I am active In caring for myself physically.

49. I get the exercise I need.

50. I take my time.

51. I enjoy touching and being touched.

52. What I eat is healthy.

53. I make sure I have time to relax.

54. I listen to music.

55. I can express myself in many Ways.

56. My dreams make sense.

57. I've discovered that there is more to me than what meets the eye.

58. I trust my Intuition, dreams, fantasies or my inner sense to let me know
what -I need to know.

59. I feel a part of something much bigger than me.

60. I live as fully as I can.

61. I can love and be devoted to another without losing myself.

62. I am more consistently aware of what's Important.

63. Some kind of -"Inner" wisdom has been guiding me.

64. I believe that death Is only one of many transitions I'll make in life.

65. I feel connected to what I've lost in ways I never expected.

66. I want to help others who have this kind of life experience in common
with me.

67. What is important to me has changed.

68 I have rediscovered the essential parts of me. _

69. I want to have some degree of control over how and when I die.

70. I have time for my family and friends and time for me.

71. I feel lovable.

NOTE: If a statement is true about you, but is not a response to the loss,
leave it blank.

 

182

TRAIHSIFOHIIIE [LOSS

As a result of this loss,

1. I've found a balance between devoting energy to my personal growth and
to my relationships.

2. I have peaceful moments.

3. I am sometimes surprised by what I know and say.

4. I've discovered that the most important parts of my loss remain alive
inside of me.

5. What I own isn‘t as important.

6. I know the cycles of life have times of birth and death.

7. I feel a deeper connection to people who are no longer alive

8. I am curious about my death.

9. I can get along with less than I have needed In the past.

10. I believe there is someone or something more powerful, loving, lasting
and wiser than any single human being. ..

l l. I don't have to have all the answers for why I am alive.

l2. I know I want other people in my life.

13. I feel connected to the world and to nature.

14. I know I am in the right place for me right now.

15. I realize that I can't live without loving myself.

16. I have something important to share with others.

17. I know that things in my life can change and life can still be meaningful.

18. I am curious about what will happen after I die.

l9. My life has times of joy.

END OF QUESTIONS

APPENDIX E

DIMENSIONS OF RESPONSE TO LOSS

183

Di ensions of Response to Loss

This inventory includes the following dimensions:

Behavioral items included here are intended to assess the actual
behavior responses the bereaved individual agreed happened as a
response to the loss.

Coqnitive items include ways of thinking which the person associated
with the loss.

Emotional items include feelings and emotions which the person
associated with the loss.

Spiritual items include the impact on the person’s values,
attitudes, beliefs and will to live which the person associated with
the loss.

The inventory also includes the following or theoretically discrete
phases of the grieving process:

Coping. Items included here are ones which the person identifies as
ways to limit their vulnerability and their awareness of their loss.
The adequacy of coping is seen in the ability to limit, delay or
temporarily relieve the pressures and stressfulness of active
grieving. The most productive balance between coping and active
grieving may be one which allows for both times of awareness and
times for function (coping). Two types of coping are included:

Holdinq 0n: Items in this scale are ones which reflect the ways
people attempt to overcome or to see themselves as "beating" the
loss through such means as "keeping busy" (behavioral), being
angry (emotional), or believing the loss is reversible
(spiritual).

Lettinq Go: Items in this scale are ones which the person
indicates they use to escape from the stress and burden of their
grief. They can include, for example, the use of drinking
(behavioral), distraction (cognitive), disgust (emotional), or
sleeping (physical).

Awareness. Items included here are ones which are traditionally
associated with grieving and are almost entirely adapted from
Deutsch’s doctoral study.

Persoective. Items included here are those a person would associate
with healing from the loss and the insights about the meaning and
significance of the loss.

184

Growth. Items in this section relate to the extent to which the
person attributes subsequent growth and realization of their
potential to the loss. This section includes three parts:

Intqugtion. These items relate to the ways people might use to
mobilize their resources to actively remember their loss, to
finish their business with it, or to make restitution, forgive-
ness, or rehabilitation.

Self-empgwerment. These items are designed to associate dif-
ferent ways of increasing one’s resourcefulness, flexibility,
and responsivity as a reflection of the loss.

lrgnsformation. Items in this section are designed to associate
changes in one’s world view and the nature of the losses in
general as a function of this loss.

Source: J. Schneider, 0. Deutsch, & T. McGovern (l990). Under-
standinq the transforggtive potential of grief. Construct
validation of the Response to Loss Inventory. TRL. Unpub-
lished draft of an article.

APPENDIX F

TABLE OF VALIDATION (RESPONSE TO LOSS INVENTORY)

 

185

Table F.l.--Reliability coefficients for the RTL II (1988+89)

 

 

(N = 207).
Category Cronbach’s Alpha Guttman Split-Half
Holding On .93 .9l
Letting Go .94 .94
Awareness .97 .96
Perspective .93 .90
Integration .95 .93
Self-Empowerment .97 .96
Transformation .88 --

 

Source: J. Schneider, 0. Deutsch, & T. McGovern (1990). Under-
standinq the transformative potentigl of qrief. Construct
yglidgtion of the Response to Loss Inventory, TRL. Unpub-

lished draft of an article.

APPENDIX G

INFORMED CONSENT FORMS

 

I
I

187

RESEARCH STUDY PARTICIPATION AGREEMEN
1990 . .
SECONDARY SUBJECT '

As an instructor of stress management, I have a strong curiosity to understand
more completely what techniques and learning formats are most profitable to
adults seeking programs of stress management. It has long been known that
people manage stress in many ways and that each person adapts to life's
circumstances in different ways. I am proposing to study this topic by
interviewing female adult Systemic Lupus Erythematosus patients who are
between the ages of 25+55. The intent of this study is to understand some of the
kinds of transitions SLE patients are faced with and to learn about the types of
coping mechanisms they rely on day-to-day.

This pilot project will run from August 1990 through December 1990. The
project will include primarily participant interviews of SLE patients. Additional
interviews will be obtained from willing significant others, both lay and medical
personnel.

Confidentiality will be maintained (including community of origin) for all
participants and any persons identified as a part of the interviewing process.

ALL IDENTIFICATION WILL BE REMOVED IN THE FINAL WRITTEN
REPORT TO GUARANTEE ANONYMITY. THIS STUDY IS IN NO WAY
INTENDED TO BE EVALUATIVE. THE STUDY IS FOR EDUCATIONAL
PURPOSES ONLY. IT IS MEANT TO HELP BETTER UNDERSTAND AND
INFLUENCE THE TEACHING AND DEVELOPMENT OF FUTURE
PROGRAMS OF STRESS MANAGEMENT.

If you have any questions, please feel free to call me at home (784-1332) or at
work (787-0800).

Iim Scott

4986 Country Manor

Iackson, Michigan 49201

I have read this proposal and I agree to participate as a significant other or
medical personnel related to a SLE-primary subject in this study.

 

SIGNATURE DATE

APPENDIX H

LETTER OF INTRODUCTION TO PROFESSIONALS

 

 

188

Dear (Professional),

I am seeking research subjects who have Systemic Lupus
Erythematosus, are female and are between the ages of 20 and 55 years.

The purpose of this study is to review the life stories of Systemic Lupus
Erythematosus patients to examine the possible relationship of their illness to
their life long transitions and their varied coping responses in life. The research
will include personal interviews and the use of three survey instruments. In
addition, possible additional information may include review of any reflective
work like journals and writings, home or work visits and the interview of other
significant persons in the participant’s life. All participants will be required to
sign an informed consent prior to involvement (See attached). All data
collected will be held in total confidence. The reporting of data will not include
the real identities or location identifications of any of the subjects or any other
data that could indicate the identification of the participant.

If you have any clients, patients or friends who you feel would be
interested in contributing to this kind of research or who you feel would benefit
from sharing their life story please provide them with the attached overview
letter, or have thern call me. You could also send their name to me after you
have talked to them and I would be excited to call to them personally.

Should you have any questions regarding this research or about the
eligibility of a perspective subject please feel free to contact me. I can be
reached at 1-517-784-1332. If it is long distance please feel free to call me
collect. Thank you for your time and support in this research project.

Sincerely Yours,

James J. Scott
Professor of Health and Physical Fitness
Jackson Community College

 

APPENDIX I

LETTER OF INTRODUCTION TO PROSPECTIVE SUBJECTS

189

Dec Promctive Subject,

, I am seeking resea'ch subjects who have Systemic Lupus Erythematosus. a'e
female and are between the ages of 20 and 55 was.

The ptrpose of this study is to review the life stories of Systemic Lupus
Erythematosus patients to examine the possible relationship of their illness to the'r life
long transitions and their varied coping responses. If you choose to participate. you
involvement will include personal interviews focused on your life story and the use of
three survey instruments related to changing life circumstances. Possible addiitonal
information may include a review of reflective journals or writing, home or work site visits,
and the interview of other significant persons in your life. The interview with significant
others, the review of reflective work and home or worksite observations will only ocotrif
you as willing. An informed consent form for sigfificant others is also requ'red. All data
collected will be held in total confidence. The reporting of data will not include the real
identities or location identifications of any of the subjects or any other data that could
reflect the identification of the particular paticipant. You will be requ'red to sign an
informed consent prior to involvement. You approximate time involvement will be from
7-9 ours.

Should you have any questions regarcing this reseach please feel free to
contact me. I can be reached at 1-517-784-1332. If it is long dstance please feel free to
call collect. Thank you for your time and support in this research project.

Sincerely Yous:

James J. Scott
Professor of Health and Physical Fitness
Jackson Community College

 

APPENDIX J

NATIONAL AND STATE ORGANIZATIONS CONTACTED FOR THE STUDY

 

190

National and State Organizations Contagted for the Studv

Organizations contacted by mail:

Bay Area Lupus Foundation

2635 North First Street, Suite #206
San Jose, CA 95134

(800) 523-3363

(Very extensive materials listing)

Lupus Foundation of America

1717 Massachusetts Avenue, N.W., Suite #203
Washington, D.C. 20036

(202) 328-4550

Michigan Lupus Foundation
26202 Harper Avenue

St. Clair Shores, MI 48081
(313) 775-8310

Organizations contacted by telephone:

American Lupus Society
(213) 542-8891

Lupus Erythematosus Support Club
(803) 764-1769

Lupus Network
(203) 372-5795

National Lupus Erythematosus Foundation
(408) 954-8600

 

 

APPENDIX K

RISK-TO-BENEFIT RATIO

 

1

 

191

Risk-to-Benefit Ratio
Three areas are discussed in this section. The first two areas
concern possible benefits and risks. The third area considers how

the risks may be minimized.

Possible Benefits

1. SLE patients had an opportunity to share their stories.
This sharing provided other SLE patients with another point of
reference as they encountered their own illnesses. Reports related
to these interviews may provide friends, family, lay persons,
medical personnel, and adult educators with an understanding of some
of the types of transitions and insights that SLE patients have
encountered as a result of their illness.

2. The study was a rich source of intimate narratives. These
narratives -may be useful in teaching concepts related to the
management of stress.

3. This study allowed SLE patients the opportunity to share

some of the experiences that they had been carrying for a long time.

Potential Risks

Due to the nature of this type of research, individuals were
asked to self-disclose a great deal. When there is self-disclosing,
there is a possibility that the information being shared might place
the individual at risk. This kind of risk is at least at two
levels:

1. There is a possibility that individuals who are willing to

share. at this level might expose very intimate experiences and

192

feelings that, if revealed, would compromise current relationships
or positions.

2. A further possibility of risk exists through this sharing
in that one might encounter past experiences that could be painful

and create discomfort.

Minimizing Risks

In an effort to minimize the risks of this research, the
following actions were taken:‘

1. The focus of the research was on a chronological and
retrospective perspective of a person’s life with chronic illness.
No questioning designed to be therapeutic was developed
intentionally. Questions were prescreened for appropriateness by an
expert panel.

2. When questions or concerns arose, the research participants
had direct access to the researcher. Recommendations for follow-up
support and referral were then made as needed. Each participant had
the right to withdraw without recrimination at any time she felt
discomfort or her life circumstances changed and she saw a need to
discontinue involvement.

3. Because of the manner in which this information was
treated, there were no breaches of confidentiality. The actual
reporting of all data maintained the anonymity of all persons
involved. No real names, identities, or sites were used in any of
the reporting or capsuling of the materials. Each person was given

a fictitious name and identity that completely protected anonymity.

193

Informed consent was secured from the following individuals:

1. The individual whose life history was gathered. I

2. The support and medical person who had connections with the
individual whose life history was gathered.

The informed consent forms used for these purposes appear in

Appendix G.

 

K

 

APPENDIX L

LETTER OF APPROVAL FROM THE UNIVERSITY COMMITTEE ON
RESEARCH INVOLVING HUMAN SUBJECTS

 

‘9.

 

194~

MICHIGAN STATE UNIVERSITY

 

OFFICE OF VICE PRESIDENT FOR RESEARCH EAST LANSING 0 MICHIGAN 0 488241046
AND DEAN Of THE GRADUATE SCHOOL

November 7, 1990

1RB# 90-429

James J. Scott
4986 Country Manor
Jackson, MI 49201

RE: A STUDY OF LIFE LONG TRANSITIONS, COPING RESPONSES AND EUSTRESS
RESPONSES OF SIX FEMALE SYSTEMIC LUPUS ERYTHEMATOSUS PATIENTS BETWEEN
THE AGES OF 20 AND 55 YEARS, IRB# 90-429

Dear Mr. Scott:

UCRIHS' review of the above referenced project has now been completed. I am
pleased to advise that the rights and welfare of the human subjects appear to
be adequately protected and the Committee, therefore, approved this project at
its meeting on November 5, 1990.

You are reminded that UCRIHS approval is valid for one calendar year. If you
plan to continue this project beyond one year, please make provisions for
obtaining appropriate UCRIHS approval one month prior to November 5, 1991.

Any changes in procedures involving human subjects must be reviewed by the
UCRIHS prior to initiation of the change. UCRIHS must also be notified
promptly of any problems (unexpected side effects, complaints, etc.) involving
human subjects during the course of the work.

Thank you for bringing this project to our attention. If we can be of any
future help, please do not hesitate to let us know.

Sincerely,

  

David E. 1311M:
Chair, UCRIHS

DEW/deo

cc: Dr. James Snoody

MSU it all Affirmative Action/Equal Opportunity Institution

 

APPENDIX M

SUBJECT PROFILE SUMMARY INFORMATIONAL BREAKDOWNS

 

It

 

195

Subject Profile Summary Informational Breakdown

Individual items include:

Subject: Item includes a first name that holds the subject’s
identity in confidence.

Aga: Item reflects the age of the subject at the time of the study.

Gender: Item reflects the sex of the subject.

 

Current marital status: Item reflects the current marital status of
the subject: single, married, divorced, or widowed.

Marriages: Item reflects the number of marriages.
Divorces: Item reflects the number of divorces.

Children--natura1: Item reflects the number of children conceived
and delivered by the subject.

Children--adonted: Item reflects the number of children adopted
into the family by the married subject.

Miscarriages: Item reflects the number of pregnancies that were not
completed due to natural complications.

Xaars diagnosed: Item refers to the number of years with a
confirmed diagnosis of SLE.

Years with possible symptoms before diagnosis: Item reflects the
number of years the subject had symptoms before diagnosis.

Organ involvement: Item refers to the types of organs that were
involved as a result of SLE.

Joint pain. Item refers to the presence of joint pain on a daily
basis.

Fatigue: Item refers to the presence of chronic fatigue.

Allergies: Item refers to the presence of significant allergies in
the subject’s life.

Possible hereditary: Item refers to the possibility of a hereditary
link with SLE.

Relationship: Item refers to family members with SLE or similar
illnesses.

 

 

196

Medications: Item refers to the presence of medications of SLE on a
daily basis.

East or present involvement in support group: Item refers to the
subject’s attendance at and/or involvement involvement in a support
group at some time.

Has had or was referred to counseling: Refers to the subject’s use
of a counseling professional.

 

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