Abstract: multiple sclerosis (MS) is a demyelinating disease of the central nervous system that is w...

1. The lived experience of relapsing multiple sclerosis: a
phenomenological study.
Abstract: multiple sclerosis (MS) is a demyelinating disease of the central nervous system that is
well known but poorly understood by the medical and nursing community as well as the general
public. The myriad neurological symptoms result from an auto-immune attack on the insulating
myelin of the nerves which cause a disruption of nerve impulses in the brain and spinal cord. MS
most often affects young adults and may be broadly categorized as either a relapsing or a chronic
progressive disease course. Until recently, research has focused on the progressive form of MS
though it accounts for less than half of the cases. People who are diagnosed with relapsing MS are
cared for in the same way as those with the debilitating progressive form. Relapsing MS affects
individuals periodically with exacerbations from which they often recover completely, whereas
chronic MS results in a progressive functional deterioration; People with relapsing MS are not given
a realistic prediction of what to expect in their future nor are they left with any hope for normalcy in
their lives. Tbe purpose of this study was to provide a description of the lived experience of people
who hate relapsing MS.
To answer the question, "What is the lived experience of people with relapsing multiple sclerosis?"
this study was conducted using hermeneutic phenomenology. A sample of 10 patients with relapsing
MS was interviewed over a seven month period. Interviews began with the question, "What is it like
for you living with multiple sclerosis?" The interns were tape recorded and transcribed verbatim.
Data were analyzed using the Colaizzi method of hermeneutic phenomenology. Themes that
emerged from the data were combined and abstracted into twelve dimensions that described the
lived experience of people with relapsing MS. Participants' social networks served as either positive
or negative influences in their adjustment process and led to conflicts for some. Coping with
recurrent symptoms and social situations related to the MS was facilitated by maintaining control
and a sense of hope. Most expressed a sense of relief with diagnosis because the bad secretly feared
their symptoms were a result of a fatal illness or psychological instability. Uncertainty surfaced as a
major theme due to the unpredictability of relapsing MS. Participants also experienced fear and loss.
Getting to know MS was an integral part of the experienced often made difficult by concealment of
facts. Participants experienced acts of revealing and concealing throughout their illness process and
often attempted to conceal their illness from a society that did not understand. Nurses should be
aware of the relapsing MS experience when providing care and teaching to patients and families
with MS. The nurse should also reject on the importance of maintaining hope and open
communication.
Introduction
Multiple sclerosis (MS) is a chronic demyelinating disease of the central nervous system which has
been studied in detail since its initial pathological description in 1830. The clinical presentation of
symptoms is variable with two major disease course classifications: chronic and relapsing. Persons
with chronic disease experience a steady decline in function whereas those with relapsing disease
have bouts of neurologic illness with recovery between attacks. The relapsing disease category
includes both relapsing-remitting and relapsing-progressive MS. Those with relapsing-remitting MS
experience a complete recovery between exacerbations whereas those with relapsing-progressive
illness experience relapses which leave them with residual deficits. The chronic form of MS is most

2. recognized by society due to the cumulative disability that it causes. Generalizations regarding MS
are made from the chronic progressive perspective. Persons with relapsing MS represent the
majority of the MS patient population though their experience is poorly understood. Therefore, the
purpose of this study was to describe the lived experience of people who have relapsing multiple
sclerosis. This study applied the methods and philosophy of hermeneutic phenomenology for
collecting and analyzing data to answer the question, "What is the lived experience of persons with
relapsing multiple sclerosis?" The study provides an understanding of the patient experience that
can assist nurses in the preparation of more appropriate health teaching and patient care. Results of
this research will promote an understanding of the relapsing MS patient experience by health care
professionals as were as by MS patients and their families. In addition, the results of this study may
lead to the development of nursing theory and interventions to improve the care of these patients.
Background
Multiple sclerosis was first described pathologically in 1830 by Robert Carswell and Jean Cruveilhier
of London.[6] Jean-Martin Charcot of France was the first to describe the clinical disease of MS
caused by plaques of the central nervous system separated in time and spaces which resulted in
phases of the disease with remissions and chronic progression. Augustus D'Este represents the first
well documented case of MS which began with bilateral optic neuritis in 1822.[6]
Multiple sclerosis affects young adults primarily between the ages of 20-50 yeas, with women
representing 73% of the cams.[23] The incidence of MS is highest between the 38th and 52nd
parallel accounting for the case concentrations in the British Isles and Northern Europe as well as
the Northern United States and Canada. There are an estimated 250,000 to 350,000 people with MS
in the United States.[1] MS is thought to be a disease of auto-immune etiology in a genetically-susceptible
individual[38] with an onset often associated with viral illness or trauma. The most
common symptoms MS include visual loss or blurring, numbness, weakness, loss of coordination and
balance, difficulty speaking or swallowing, loss of bladder and/or bowel control and
neuropsychological disorders. Persons with the less common but more apparent form of multiple
sclerosis, termed chronic MS, demonstrate a steady neurological and functional decline. Chronic MS
sets its own tempo ranging from very slowly progressive to acute relentless deterioration. The
majority of persons with MS experience exacerbations of the symptoms from which they recover at
least partially; such a disease course is labeled as relapsing MS. Though relapsing MS is the most
common form of the disease, the patient experience remains undocumented and poorly understood.
Therefore, newly diagnosed patients may be told to expect a chronic deterioration of their functional
abilities with impending reliance on a wheelchair which is grossly inappropriate for those with
relapsing disease.
Literature Review
Swingler and Compston interviewed, examined and reviewed the medical records of 301 persons
with multiple sclerosis to determine signs, symptoms and disease course.[45] For the reported
sample the mean age of onset was 32.2 years with the mean age of diagnosis at 36.4 years
illustrating that patients were diagnosed an average of 4 years following the onset of symptoms.
Forty-nine percent of the sample had a relapsing-remitting disease course while 27.9% had a
relapsing-remitting course followed by secondary disease progression. Progressive disease from the
onset occurred in 19.2% of the sample. The course of disease could not be determined in 3.6% of the
sample. This study did not include persons with benign MS; however, the authors acknowledge that
approximately one-third of persons with multiple sclerosis have benign disease. Those surveyed
reported weakness and sensory disturbances as their most common symptoms followed by ataxia,
bladder dysfunction and fatigue. On examination, the most common finding was a visual function

3. defect. Kurtzke reviewed the medical records of 527 veterans diagnosed with MS to determine
patterns of neurologic involvement as illustrated by the Kurtzke Functional Systems scale.[16]
Pyramidal (affecting the arms and legs), cerebellar, brainstem and sensory symptoms were the most
frequently affected systems. Bowel and bladder, visual and cerebral systems were reported less
often.
Runmarker and Andersen studied a Swedish cohort of 308 MS patients for more than 25 years.[40]
The most favorable prognostic indicators were low disability and long periods of remission lasting
for five years. Also favorable were acute onset, young onset age, high degree of remission following
die first exacerbation, symptoms from afferent nerve fibers (optic neuritis) and symptoms from one
central nervous system (CNS) region. From this study, young patients with acute onset of symptoms
enjoyed a good prognosis rather than many years of accumulating disability. A cross-sectional study
of 574 patients from 7 European MS centers revealed a similar pattern as did a sample of 1,099
Canadians studied by Weinshenker et al.[49]
Phadke surveyed 1055 patients with MS to determine the level of significance of demographic data
to disease progression.[30] Using nonparametric statistics no significant difference was found
between the sexes, disease courses or progression. Most of the patients in the sample were
categorized as remitting or relapsing-cumulative (65%). Relapsing-progressive disease accounted for
22% of the sample while only 9% had progressive disease.
Clinicians have argued at length whether or not to inform patients of their MS diagnosis. Sencer
suggests that due to the unpredictable course of the disease, the uncertainty of the diagnosis and
potential emotional devastation physicians should avoid informing patients of their MS
diagnosis.[43] Miller and Hens emphasize drat the diagnosis dilemma is argued solely from the
physician point of view and suggest qualitative studies to determine the patients' perspective.[22]
Two studies conducted by the Rochester-Toronto MRI Research group demonstrated the patients'
desire to be informed when the MS diagnosis is being entertained.[29,27] The studies were
conducted on patients who were seen at MS centers for diagnosis therefore this sample may not
accurately represent those patients in whom the diagnosis is being entertained by independent
practitioners.
Arriving at the MS diagnosis early in the disease process has become more important than ever
because treatments such as beta-interferon and low-dose methotrexate are now available to
decrease exacerbations and inhibit disease progression.[14] The first treatment for relapsing MS
which has been shown to significantly decrease functional disability is beta interferon-1a; this drug
was approved by the Food and Drug Administration in 1995.[13]
Because multiple sclerosis is a chronic disease with no known cure, a significant proportion of the
MS research is dedicated to coping and adjustment. Pollock, Christian and Sands interviewed 211
adults with rheumatoid arthritis, hypertension or multiple sclerosis.[32] Data was collected
regarding physiologic adaptation, psychological adaptation, health-related hardiness and a scale to
measure die individual's ability to tolerate the changes. The rheumatoid arthritis group was similar
to the MS group. The hypertension group felt less burden from their illness than the other two
groups. Though the rheumatoid arthritis group was more burdened by their disease, the MS group
demonstrated more psychological distress. Physiologic adaptation was positively related to
hardiness but not related to psychologic adaptation. The three chronic illness groups were similar in
their psychologic adaptation but different for physiologic adaptation. Hardiness was the only factor
related to both psychological and physiological adaptation.
Self-efficacy and outcome expectations were used to predict adjustment to multiple sclerosis.[48]

4. Outcome expectations were not found to be a significant influence on adjustment. Self-efficacy, or
one's confidence in their ability to perform, was positively correlated with adjustment in the sample
of 62 persons with MS.
A small convenience sample of patients hospitalized for MS exacerbations completed an MS Stressor
Scale and a Jalowiec Coping Scale and their disability was measured by the Barthel Index.[4] The
sample scored high on the Barthel index indicating a high degree of independence. Analysis of the
coping data revealed self-reliance as the most frequently used coping style with humor as the most
popular strategy. Uncertainty about the future was positively correlated to fatalistic coping and
depression was negatively related to optimism. There was no relationship between degree of
disability and stressors. The most disturbing stressors reported included fatigue, inability to walk
and uncertainty about the future.
O'Brien investigated the relationship among self-esteem, social support and coping behavior in a
convenience sample of 101 persons with MS. In addition to demographic information respondents
completed a coping checklist, a self-concept scale and a social support questionnaire.[28] The study
findings supported the relationship between self-esteem and problem-focused coping but did not
support a relationship between social support and problem-focused coping. Therefore, problem-focused
coping appears to be related to self-esteem but not to social support. The demographic data
from this study demonstrated a correlation between problem-focused coping and education
indicating that the more educated respondents utilized more problem-focused strategies. The
demographic data also revealed a correlation between social support and employment, leading the
reader to conclude that those respondents in the work force had more opportunities for social
support.
Wineman developed a path model to explain adaptation to multiple sclerosis.[51] Social network and
support, incapacity, uncertainty, depression and purpose in life survey instruments were completed
by 118 MS patients. A path model was supported illustrating the relationships of the social
supportiveness of interactions and functional disability on perceived uncertainty and adaptation.
Perceived supportiveness of interactions was directly related to purpose-in-life but not to depression,
meaning that those persons with MS who participated in supportive interactions had more of a sense
of purpose to their lives while at the same time experiencing less depression. Perceived
unsupportiveness and uncertainty were related to depression and purpose in life. Finally, functional
disability was directly related to adaptation.
Hope, self-esteem and social support in persons with multiple sclerosis were studied using mailed
questionnaires completed by 40 persons with MS.[9] A Miller Hope Scale, A Rosenberg Self-Esteem
Scale and the second part of the Personal Resource Questionnaire were completed by all
respondents. Significant relationships were demonstrated between hope and self-esteem, social
support and hope as well as between social support and self-esteem. Therefore, using the scales
selected, variables appear to be an interrelated. The significance to a person with MS is unclear
from the report of this study.
The role of social support and disability was studied in 101 individuals with MS to determine the
primary types and sources of social support for persons with MS along with their relationship to
disability.[28] Individuals from this sample had an average social network size of 9 including 4
family members and 2 friends. Most of the social support was in the category of affect or affirmation
such as love and respect from their network. The amount of affirmation received was negatively
related to the level of disability so that the more disabled persons received the least affirmation.
Spouses or partners provided die majority of the support.

5. The experience of relapsing MS has not been studied using phenomenologic methodology; therefore,
the assumptions made regarding this patient population are not necessarily grounded m the reality
of the patient's life. Patients need to be asked about their lived experience of MS so that we as
health professionals can address concerns and improve quality of life.
Method
Certain assumptions are inherent to the hermeneutic phenomenology method including the
assumption that study participants are knowledgeable about the topic under investigation and
expert by virtue of their participation in the phenomena.[26] This method also assumed that
participants were honest and did not intentionally fail to reveal aspects of their experience. In
addition, this researcher assumed that there was no other disease process significantly affecting the
patient's experience and controlled for this in the selection of participants.
This phenomenological study describes the lived experience of patients diagnosed with relapsing
MS. Participants were from two MS clinics in Western New York and limited to those that were
willing and able to relate the experience, diagnosed for greater than one year with an Expanded
Disability Status Score (EDSS) less than 3.5. The EDSS ranges from 0 which indicates normal
functioning to a score of 10 indicating death due to MS.[17] Scale increments differ by 0.5. A score
of less than 3.5 indicates that the person walks without assistance. Patients with communication
disturbances or cognitive deficits were not invited to participate in the study.
Volunteers were asked to participate by the investigator as they presented to the clinic for a
neurological evaluation and interviews were scheduled at a place and time most convenient to the
participant keeping in mind the need for uninterrupted time and privacy. Prior to each interview
written consent to participate and be audiotaped was obtained. The interviews were conducted and
analyzed concurrently using hermeneutic phenomenologic methodology. Interviews began with the
researcher instructing the participants to describe in as much detail as possible their experience
with relapsing multiple sclerosis. Verbal probing questions such as, "How did that make you feel?"
were utilized by the researcher to encourage full disclosure.
Audiotapes of the interviews were transcribed verbatim according to the Tedlock method[46] shortly
after they were conducted. Identifying data were removed to protect the confidentiality of those who
participated. Colaizzi's method of interpretation was used to analyze and interpret the data.[5]
Sampling continued until no new information emerged and all categories were saturated. An
exhaustive description of the phenomenon of the lived experience of relapsing multiple sclerosis
resulted and was verified by the participants.
Results
The convenience sample consisted of seven women and three men which reflects the gender
distribution of MS in society.[23] Participants' ages ranged from 40-59 years, and they had lived
with the disease from 2-39 years. Diagnosis of the disease occurred between the ages of 24-51 years.
Six of the participants were actively employed outside of the home, one was retired, two were
housewives and one provided child care for five grandchildren. All of the participants were
caucasian, 8 of the 10 were married with children.
Emerging themes were presented to the subjects in an effort to verify that the themes were
congruent with their own experience. Some of the themes were verified while others were rejected
due to differences in perception of the MS experience. For example, one participant used her
diagnosis as an excuse to avoid certain duties and obligations while all of the others strongly

6. objected to this coping method. The essence of the experience was made up of twelve themes.
1. Social network
2. Adjustment
3. Coping
4. Hope/hopelessness
5. Control
6. Conflict
7. Relief with diagnosis
8. Uncertainty
9. Loss
10. Fear
11. Getting to know MS
12. Revealing/concealing
Social Network
All participants relied on social networks. Some subjects' networks consisted primarily of their
spouse and family while others listed health care professionals among their social network from
whom they gathered support. For a few participants, their family was too supportive which led to a
loss of independence,
"...this is my problem with my husband. He's
too helpful and I'm afraid with his help I'm going
to lose what I can do."
Several participants were concerned about the burden that their disease placed on their families.
One participant stated, "I don't know why he doesn't leave me." Some participants expressed
concern for people with MS who did not have adequate support networks. Two of the participants
expressed difficulty talking to their mothers about the disease because the mothers did not want to
discuss it. These subjects were upset by the mother's reaction.
Some participants found the MS Society to be supportive in helping them to learn about and cope
with MS. One participant illustrates:
"I made a call to the MS Society. I got a
woman there who answered the phone. She

7. answered more questions. Told me more in
about two minutes that day on the phone than
any doctor has ever told me before, during, or
since."
In contrast, one participant saw the MS Society as a barrier to learning about MS due to inflexibility
and misinformation. Many participants discussed their reluctance to participate in the MS Society
because they were not as disabled as others. Several participants avoided the MS Society because
they did not want to see people in wheelchairs.
All of the participants in this sample reported that they had adjusted well to their MS; however, this
adjustment period varied among individuals. For several, the adjustment started with a definitive
diagnosis and the realization that they did not have a terminal disease. The experience is described
by one participant, "It gave us a diagnosis where it's, oh, she has MS. OK that's fine, we can handle
this ... we didn't think in terms of wheelchair.. We thought, Oh great, she going to live until next
week." All of the participants emphasized the importance of a positive attitude and had come to the
conclusion that MS was, "Not that bad."
Coping
Coping with symptoms and the inconvenience of MS was a hurdle to overcome as individuals
attempted to adjust to the disease. Most participants described minor changes which they made in
their lives in order to better live with MS. They demonstrated a sense of independence and self-reliance
in coping with the MS. The female participants found it helpful to avoid high-heeled shoes
because of balance problems. Others had to change the way in which they wrote due to poor
penmanship or the inability to manipulate a pen with the dominant hand. Most participants found it
helpful to exercise and avoid stress. They also rested during the day to conserve energy. Some
problems were easier to cope with they others. Problems with bowel and bladder control led one
participant to fear the need for a nursing home. For another participant the most threatening
symptom was a visual disturbance which prevented him from driving. Still another participant was
most concerned with seizures which he could not predict. These problems and symptoms required
the participants to cope with the situation by developing strategies to manage the problem. Several
participants used humor to cope with their sometimes frustrating or embarrassing symptoms.
Hope/Hopelessness
Hope and hopelessness was a topic mentioned by all participants. With the initial diagnosis, several
participants were told there was nothing that could be done for MS. One subject described the
atmosphere as "doom and gloom." Once seen by a MS specialist, participants learned to expect a
brighter future which could be free of disability. One participant stated:
"And I'm hoping that the light is brighter for
anyone being newly diagnosed or having had MS
for a long time. With the types of research that
are being done, with the progress that is being

8. made, I think the future for all of us who have
MS is brighter as a result of the work that is going
on right now."
Several participants stressed the importance of projecting hope for the newly diagnosed and some
found hope in religion.
Control
For all participants, control played a role in the MS experience. The loss of control due to
unpredictable seizures was the most disturbing part of MS for one subject which brought him to
tears even though his seizures were well-controlled on medicine.
Most participants found it important to control their disease process and maintain their
independence with their will. Several participants firmly stated that they will "never use a
wheelchair." One participant swore he would tie lumber to his legs and walk on stilts instead of
using a wheelchair.
One highly educated individual stated there was no way to control a disease whose cause was
unknown. For this participant control was found by promptly accessing medical resources when
needed. Knowing he had this control put his mind at ease because he knew he could get immediate
treatment for exacerbations.
Some participants relinquished control to God. They faithfully accepted their destiny and did the
best with what they had. The future was identified consistently as beyond anybody's control.
Conflict
Conflict was part of the MS experience for all participants. For many, anger predisposed them to
conflict. Most participants described a conflict with physicians regarding diagnosis or explaining the
disease. One participant argued with doctors and technicians regarding symptoms for which they
could not find a physical basis. The same participant fought with his employer and insurance
representative because he was not well enough to return to work but not sick enough to be disabled.
One participant had considerable conflict with her family because they encouraged her to see an MS
specialist following her diagnosis. She resisted because she did not want to be a "guinea pig" for
research. The same participant described conflict with employers who did not believe she was sick
when she had MS exacerbations.
Relief with Diagnosis
All of the participants had symptoms for a considerable period of time before they were diagnosed.
Several were told they had a virus, rheumatism or a brain tumor. Many feared privately that their
symptoms were from a brain tumor and therefore expressed extreme relief at the diagnosis of MS.
The prospect of a chronic remitting was considerably better than a life-threatening one. One
participant was told she had demyelination but the term was never explained. She was greatly
relieved when the MS Society counselor explained disease to her making her future clearer.
One participant was very ill with fevers and delirium when she learned of her MS diagnosis. Both the

9. participant and her husband were happy to learn she would survive even if it meant she had to cope
with a chronic illness.
Uncertainty
All participants dealt with uncertainty. Many expressed the notion that MS was so unpredictable
that they did not know what their level of function would be when they woke-up each morning. Many
said they lived one day at a time. Several adamantly protested the thought of ever needing a
wheelchair but there was a stubborn uncertainty in their stories. Some participants felt they would
have no further problems with the illness but resigned themselves to the thought that exacerbations
may come. There was no predicting the course of ms for these individuals.
Loss
All Participants experienced a sense of loss with their MS. The losses were different among the
individuals and included a loss of independence, employment, significant relationships and
functional abilities. The second participant was the most descriptive in relating his loss of
independence due to his unpredictable. He thinks of himself as broken, like a "dripping faucet."
Several participants related a loss in their lifestyle whether from loss of the ability to perform their
job or decrease in stamina which slowed their pace. The last participant's most frustrating loss was
the loss of ability to write with his night hand due to the remnants of an exacerbation.
Fear
All participants expressed fear both in themselves and in their primary support persons. Several
mentioned their hidden fear that their symptoms were due to a brain tumor before they were
diagnosed. Severe exacerbations caused some participants to fear for their lives when they did not
know what was causing their illness. Some feared the loss of their support networks due to their
illness.
Getting to Know MS
Getting to know MS and what it can do was a theme throughout the interviews. Some participants
had knowledge of MS when they were diagnosed while others had no idea what the illness was
about. Participants used a variety of resources and opportunities for observation in order to learn
about MS. The unpredictability and potential for disaster served as a frightening barrier to the
learning process.
Several participants were misinformed about their illness and found even health care professionals
did not understand the disease. Some participants expressed frustration with the lack of resources
for learning about MS and some mentioned the helpful programs of the National MS Society.
Several participants observed people with MS in wheelchairs and were frightened by the prospect of
such dependence in their future. With time, they seemed to accept the fact that their relapsing-remitting
MS was different and though there were no guarantees there was hope for their future.
one participant says that in learning about her illness she has come to think of MS as her friend.
Revealing/Conceal
A struggle with revealing or concealing the cause of their symptoms was often the first experience
with MS. Several participants began with vague symptoms which could not be attached to a

10. diagnosis while others had symptoms that would probably develop into MS in time. Participants
were often given the wrong diagnosis such as rheumatism, a virus or psychiatric illness. Some
participants were told that their physicians knew all along that they had MS but did not want to
reveal the diagnosis to them because there was nothing that the physicians could do to improve the
situation.
Once diagnosed, most struggled to conceal their diagnosis from a public that does not understand
MS. Participants related that they often did not let anyone know they had MS because people think
MS is a contagious disease. Since all the participants looked and acted healthy, it was em for them
to conceal their illness from the public. Several were discriminated against because they appeared
too healthy and illegitimately used the sick role for parking places and disability benefits.
Many participants tried to conceal their symptoms from family members who appeared overly
concerned. They even kept minor problems from their doctors because over time participants
learned the symptoms would subside on their own.
Synthesis of Themes
The lived experience of relapsing MS is primarily one of uncertainty and learning to cope with an
illness that cannot be predicted. The experience often starts with odd symptoms which defy
diagnosis and stress the social support network. There is a sense of relief when a diagnosis is made
and the long process of learning about and adjusting to the disease begins. With the diagnosis of a
chronic illness comes the loss of the former healthy self and unbridled abilities. Those who have
adjusted well to their experience of relapsing MS have learned to control their disease and maintain
a sense of hope. Many feel it is necessary to conceal their illness from the general public that does
not understand and even fears the illness as a contagion.
Discussion
Social support is a concept defined by the social network people interact with and depend upon.[44]
Social support can benefit health directly by providing for physical needs as well as by reducing the
consequences of stressful life events.[44] Participants in this study relied primarily on their spouses
or parents initially for support. Once an effort was made to seek medical care their networks
expanded to include health care professionals.
The value of the family as a resource for support was described by all participants in the present
study. A family's internal resources such as finances, physical assistance and emotional support as
well as resources from their social network enhance the well-being of the family.[15] Robinson
illustrates families with chronic illness attempts at normalcy.[38] Robinson contends a focus on a
normal life allows families to push problems out of focus and into the background.
Social support is not always positive. Some participants of the present study related their fear of
push physical abilities because family members insist on helping. In persons with chronic fatigue,
Ray found that positive social support was related to decreased anxiety while negative social support
was related to anxiety and depression.36 Participants in the present study dealt aggressively with
negative social support by refusing to allow people to treat them in a condescending manner and
avoiding situations which made them upset or uncomfortable.
MS is a chronic neurological illness which causes unpredictable dysfunction. Coping with the

11. thought of a chronic illness and the symptoms it imposes was disruptive to the participants'
otherwise normal lives. Pollock identifies variables which lead to psychosocial adaptation to chronic
illness.[31] Health-related hardiness, health promotion activities, ability to tolerate stress and the
perception of the disability were necessary for adaptation.
The use of humor m coping with symptoms and the search for information about their illness were
evident in the present sample as well as in the sample of patients with MS studied by Buelow.[4] A
sense of self-reliance was another common coping mechanism within the two studies. Participants in
the present study took pride in their ability to maintain a sense of independence and control. When
they experienced MS symptoms participants took self-initiated steps to cope with the symptoms such
as resting and cooling their bodies. If the symptoms escalated they obtained immediate medical
care.
The literature demonstrates a relationship between coping and social networks or social support. In
the present study, participants relied on their support network to cope with their adjustment to the
diagnosis and symptoms of MS. This finding supported Schussler's conclusion that disease concepts
and coping are related to social support.[42] Schussler further contends that people who do not
accept their illness or consider it uncontrollable tend to use emotional coping strategies; these
strategies are less effective forms of coping. Those who accept their illness and believe they can
influence it use the more constructive problem solving coping strategies like the participants of this
study.
Hope was very important for participants in the present study and the importance of health
professionals projecting a sense of hope was stressed. Hope is defined by Raleigh and Boehm as a
positive expectation which is future oriented.[35] Hope is motivational and can be a means of coping
with uncertainty as was demonstrated by the participants. Coping processes can lead to hopefulness
if the goal which has been set is attainable. The greater the perceived importance and achievability
of the goal, the greater the sense of hope. Beliefs in God, fate, or the natural order creates meaning
and contributes to hope. Raleigh explored sources of hope in chronic illness and found no difference
in identified sources of hope between respondents with cancer and those with other chronic
illnesses.[34] Family, friends and religion contributed most to a positive outlook in the chronically ill.
In the present study, religious beliefs contributed to a sense of control as well as to hope. Religion
helped participants maintain hope while family and friends provided encouragement and assistance
when needed. In addition, the most optimistic respondents also had experienced periods of
hopelessness regarding their illness as did the subjects in Raleigh's 1992 study.[34] Foote et al
found a similar relationship between hope, social support and self-esteem.[9] The authors also found
that those who were presently employed were more hopeful and had higher self-esteem. Three of the
participants in the present study were not employed outside of the home but were able to maintain
their sense of hope or self esteem.
Participants with relapsing MS identified control as part of their experience. Control of destiny was
perceived to be either in the hands of God or largely influenced by the participants. They attempted
to control their symptoms and living situations by various means such as avoiding heat, not wearing
high-heeled shoes and arranging their work to accommodate their physical needs and abilities. By
accepting illness and positively reframing its implications, individuals can perceive themselves as
self-care agents with control over the course of their illness.[2] Brooks and Matson found MS
subjects with an internal locus of control exhibited improved self-concept with increased length of
their disease process.[3] With time, the subjects with MS also felt their illness had a positive effect
on their life in Brooks and Matson's study as well as in the present study.
A phenomenological study investigating the creation of health with chronic illness in older adults

12. revealed the importance of maintaining control of what can be controlled.[21] The elderly
respondents drew on intrinsic resources to promote health and maintain a positive attitude. The
participants in the present study reflect similar attitudes in their efforts to maintain a positive
attitude and independence. Several participants mentioned that certain chores were more difficult
but they refused to ask for help to get them accomplished. Instead, they took their time to complete
the tasks of housekeeping or yard work. Rather than completing chores in one day, they would take
two days and feel better about being independent.
Anger was considered part of conflict for the purposes of the present study. Anger may lead to
conflict as well as conflict leading to anger. Several participants related situations of conflict with
their families and social support networks. Lane and Hobfoll identify anger as an important
phenomenon of chronic illness.[18] Loss and illness symptoms can lead to anger. Angry behavior
causes anger in the people who supply support for the chronically ill though this was not consistency
evidenced in the present study. Personal and social resources are depleted by the anger exhibited by
people with chronic illness. Therefore, anger and conflict may have a significant impact on the lives
of die chronically ill. Some participants of the present study expressed anger which resulted from
the frustrations of their illness. At times the participants directed their anger at family members and
health care providers creating tension and distancing.
One of the most intriguing findings of the current study was the sense of relief the participants felt
when family diagnosed with MS. Some were relieved that a physical cause had been found for
symptoms that had been labeled psychosomatic. Others were relieved to have a non-fatal illness.
Hainsworth's qualitative study also identified the relief that a patient with MS experienced when
diagnosed.[10] The results of the present research support this finding. Validation of symptoms by
family, friends and health professionals has been identified as an important dimension in the
patient's experience with chronic illness.[35] Ware discusses the relief experienced by people
suffering from chronic fatigue syndrome when they are diagnosed.[47] The author discusses
delegitimation which is the result of having illness perceptions disconfirmed by a health care
practitioner. Instead, the symptoms are labeled as psychologically-based and associated with
increasing levels of stigma in a society that is more tolerant of physical illness than it is of
psychological illness.
Multiple sclerosis is an illness that can be so mild that the affected individual is not aware of its
presence or so crippling that it can lead to death. The unpredictability breeds uncertainty among
those affected by MS. The participants in this study of the lived experience of relapsing MS
described uncertainty in their current daily lives as well as in the future. Mishel began to
conceptualize and study uncertainty in the early 1980s within the theoretical model of uncertainty
appraisal, coping and adaptation.[24] Uncertainty has been defined as a person's inability to make
sense of illness events when they are ambiguous, highly complex, lacking information or when
outcomes cannot be predicted.[20] Loveys and Klaich defined uncertainty as a process of waiting
and wondering.[19] Uncertainty in chronic illness has also been defined as the absence of a
cognitive framework for understanding the person's situation in addition to the inability to predict
outcomes.[50] Hilton emphasized uncertainty as a perceptual state that exists on a continuum and
changes over time.[12]
The uncertainty experienced by the participants with relapsing MS is similar to the definitions
described. The course of MS cannot be predicted with certainty and the physiological process is
highly complex and poorly understood. The participants in this study were never sure when their
next exacerbation was going to, occur; several mentioned the fact that they never knew how they
would be when they woke-up in the morning. The uncertainty experienced by the participants in this
study appeared to diminish over time. They became accustomed to the exacerbations and learned to

13. expect their symptoms to be temporary rather than permanently disabling. As the participants
adjusted to the uncertainty, their fears also appeared to subside.
Some authors have focused on the negative aspects of uncertainty, one of which is a loss of control.
The participants in the present study did not express a sense of loss of control with their feelings of
uncertainty nor did they express strong negative feelings toward the phenomenon. Antecedents to
uncertainty include familiarity with the illness, severity of the illness, information from health care
providers, social support and demographic variables such as age, marital status, employment and
education.[47] Continuous and unpredictable uncertainty may lead the person to reappraise the
uncertainty as less threatening. Over time, the uncertainty is accepted as an opportunity to be
healthy rather than ill. Such was the experience reported by some of the participants in the present
study.
Chronic sorrow in multiple sclerosis has been described by some authors but did not appear to be a
part of the relapsing MS experience of the participants in the present study.[10,24] The chronic
sorrow described in one case study of a woman with progressive MS focused on her loss of
independence and physical abilities.[24] Helplessness, control issues and anger were part of this
woman's chronic sorrow experience; there were themes that likewise emerged from the data
analysis of the study of the lived experience of relapsing MS. The results of a qualitative content
analysis study by Hainsworth revealed 8 out of 10 people interviewed with MS experienced chronic
sorrow.[10] Of interest was the additional emergence of the themes anger, fear, helplessness,
unanswered questions, control, relief with diagnosis, coping and social support. The present study
supports all of Hainsworth's themes with the exception of her main theme of chronic sorrow. The
discrepancy may be due to differences between samples. While the present study investigated the
lived experience of relapsing MS, Hainswofth's study captures more of the experience with chronic
progressive MS.[11] One may question whether the two participants in her study who denied the
presence of chronic sorrow had the relapsing form of MS. Perhaps chronic sorrow is related to loss
more directly than to the experience of MS.
Implications and Recommendation for Nursing Practice
This study adds to an understanding of patients' experience with relapsing MS. The experience with
chronic MS is portrayed in movies, documented in the lay literature and assumed to account for the
experience of those with relapsing forms. The participants in this study described lives of health and
hope without fear of chronic deterioration. This study provides information on the experiences of
persons with relapsing disease and how their experiences may differ from those individuals with
other chronic diseases. The person with relapsing disease tends to maintain a sense of hope and
control while dealing with the obstacles of their illness. Though there is loss for the person with
relapsing MS there does not appear to be a sense of chronic sorrow. The fears and uncertainties
described in this study are similar to those found in the literature but they appear to vary in
frequency and intensity.
The value of a support network was identified by the participants of the present study. Honest and
factual information would promote adjustment and coping. This study illustrates the importance of
providing individuals with MS with an honest explanation of their diagnosis. Several participants
entertained fears of catastrophic illness and expressed relief in their MS diagnosis.
People with relapsing MS appear to thrive on a sense of hope and control of their disease. Health
care professionals must promote a realistic sense of hope and control and not dwell on symptoms
that are related to the chronic progressive form of MS.

14. The participants in this study expressed a need to know their diagnosis in order to dispel their fears
of fatal illness. Health care professionals need to understand that by concealing the MS diagnosis
they are doing the patient a disservice. Instead of protecting patients from a fearful diagnosis,
unrealistic fears of death are perpetuated. In addition, participants in the present study expressed a
loss of confidence in health care professionals who did not assign a diagnosis and a loss of trust
when the wrong diagnosis was entertained.
Health care professionals must be aware of patients' processes of "getting to know" their MS.
Individuals with relapsing MS and their families need accurate information about their illness and
treatment options available. They need to maintain a sense of control and optimism. Although
educational opportunities are scarce, the MS Society programs can be frightening because patients
with more disabling forms of MS may be in attendance. The participants in this study found the sight
of people with MS in wheelchairs upsetting, at least in the early stages of their MS experience.
This study illustrates the need for health care professionals to teach families to be supportive of the
person with relapsing MS rather than stifling. Maintaining a sense of control and independence in
the person with MS is important. Some individuals fear if they do not maintain some sense of
independence and normalcy in their lives they will lose the ability to do so all together.
Most of the participants in this study have had MS for more than ten years and continue to function
at a level society would label as normal. Nurses can best serve their patients with relapsing MS by
providing accurate information about the differences between relapsing MS and chronic MS. With
the new treatments available, projecting a sense of hope is important. Individuals with relapsing MS
need to maintain control of their situations. For this reason, health care professionals should offer
information and opportunities to maintain independence while encouraging patients to make their
own decisions.
Patient support by the health care professional and access to care and treatment were identified as
necessary to the relapsing MS patient's adjustment. Support from their families with information
and hope was crucial. Health care professionals must be aware of the impact they have on these
patients and the importance of providing honest, accurate information. Attempting to protect the
patient by hiding the diagnosis of relapsing MS should be avoided.
Recommendations for Further Research
This study was limited by its small sample size and a sample selected from MS research centers in
the Buffalo, New York area. Those individuals who agreed to participate may differ in unknown ways
from those who chose not to participate. The results and conclusions derived from this study may
only be applicable to the subjects who participated in this study. Sample selection may also have
influenced results.
The present study should be replicated in a sample of patients selected from a different clinical
setting to determine whether the findings are generalizable to other populations of relapsing MS
patients. A similar study of more disabled patients with relapsing MS would further contribute to the
current base of knowledge and expand the generalizability of the findings.
Further research is needed to expand our knowledge of the conflicts persons with MS experience.
Additional information is needed to determine ways in which members of the health care team can
provide appropriate support especially to the support networks for the chronically ill. Finally, a
longitudinal study of the same participants would further help to develop a description of the lived
experience of relapsing MS.

15. Summary and Limitations
This study describes the patients' experience with relapsing MS. Twelve themes were identified by
the participants in this study as essential to the relapsing MS experience. The twelve themes were:
social support, adjustment, coping, hope/hopelessness, control, conflict, relief with diagnosis,
uncertainty, loss, fear, getting to know MS and revealing/concealing.
Information from the study promotes an understanding among health care professionals so as to
provide appropriate patient support. Recognizing the differences in the relapsing MS patient
experience and the experience of patients with chronic progressive disease by the health care team
is important.
Acknowledgement
This author would like to thank doctors Lawrence Jacobs, MaryAnne Jezewski and Yvonne K. Scherer
for their support and guidance as her dissertation committee. She would also like to acknowledge
The American Association of Neuroscience Nursing, Sigma Theta Tau and the Buffalo General
Hospital junior Board for their financial support of this project. Finally, the author would like to
express her sincere appreciation to her family who provided encouragement and moral support.
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