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The Journey to Multiple Sclerosis: A Qualitative Study.

Abstract: The diagnosis of multiple sclerosis (MS) often creates more questions than answers. It is not uncommon to hear about individuals who receive the diagnosis with relief and surprise. However, the implications of being diagnosed with a chronic illness like MS is complex. There is no known cure for this disease that has remissions, relapses and possible continued progression. For individuals diagnosed with MS, responding to the physical and psychological stresses of a condition with an unknown cause and no cure is challenging.

The purpose of this study was to explore the individual's experience of having symptoms for a period of time and then to be told they have MS. The phenomenological qualitative research method was used to illuminate the nature of their experiences. The time course spanned before diagnosis, at diagnosis and following diagnosis. Interviews were conducted with five purposefully selected participants. The process of data analysis highlighted common threads and patterns among informants. Four major themes emerged: Whispered Beginnings, Echoes of Silence, The Spoken Words, and Recreating Voice. The experiences of individuals recently diagnosed with MS are illuminated in order to provide insight and information to health care providers who are faced with telling a person the diagnosis of MS.

Introduction

The diagnosis of multiple sclerosis (MS) has often been talked about in the clinical setting as opening the door to uncertainty, variability and unpredictability. Individuals diagnosed with MS are required to adapt and cope with the challenges of a chronic illness for which there is no cure. The time prior to the diagnosis may also be frightening and stressful. The fluctuating symptoms of numbness, tingling, visual blurring, incoordination and weakness are often unnoticeable and may even disappear. It may be difficult to gain support from family, friends or medical personnel. However, when the diagnosis of MS is confirmed, both the individuals and their support persons are required to adjust to the diagnosis and to make sense of the time which preceded it.

The purpose of this inquiry is to understand more fully what this prediagnostic experience is like for them. The knowledge gained from this research may provide insight and information for health care providers who must inform a person of the diagnosis of MS. The renewed interest in patient-centered care supports placing an emphasis on gaining meaning from the person's perspective of the experience.

Background

Multiple Sclerosis is a chronic neurological condition of unknown cause with limited treatment options. Individuals are typically young women, who may have had fleeting neurological symptoms lasting from months to years. The mean age of onset is 30 years with a male to female ratio of 1:1.5.[19] In Canada, the prevalence rate is about 100 per 100,000.[1] Studies that examine migration and twins suggest that there may be environmental and genetic influences.[5,15]

The clinical course of MS is variable and generally unpredictable. Most patients begin with a relapsing-remitting pattern and then accumulate progressive deficits over time.[16] Although mortality is relatively unaltered by MS,[11] walking aids and wheelchairs may be necessary later in the disease course.[9]

The diagnosis of MS is based on clinical data and the exclusion of other similar conditions. There are supportive laboratory tests such as the presence of cerebrospinal fluid IgG bands, areas of high signal on brain or spinal cord magnetic resonance imaging (MRI), and abnormalities of evoked potentials that support diagnostic certainty.[11] However, in the early stages the confirmatory clinical data and test results may not be easily obtainable. Therefore, it is not surprising that the prediagnostic period may be prolonged and frustrating.

There are many research articles and reviews examining the impact of living with and managing multiple sclerosis. The psychosocial impact and adaptation to the illness have a variety of implications. From an exploratory study of 174 persons with MS, Matson and Brooks propose stages of adjustment MS patients may experience.[8] The adjustment process consisted of these stages: denial, resistance, affirmation and integration.

Only recently has the impact of a diagnostic work up been examined in persons suspected to have MS.[10] However, the subjective experiences of individuals with early symptoms of MS have not been explored. An understanding of these experiences will enhance how health professionals can provide care for individuals newly diagnosed with MS.

Method of Inquiry

Phenomenology is a human science research methodology based in the interpretive paradigm. Phenomenological research tries to grasp what people and their lives are all about without including any preconceived ideas. A common understanding of the phenomenon under study is illuminated through a search for the structure or essence of lived experiences. The focus of phenomenology is the description of lived experiences as perceived by individuals in their everyday lives. Phenomenology is concerned with reflectively analyzing thematic aspects of an experience, so that the experience is described and meaning is uncovered.[18] Through narratives, the stories of persons recently diagnosed with MS were listened to attentively and became part of the interactions to illuminate the research question under study: What was it like to have symptoms of an illness and then to be told you have MS? This single question was used to elicit the experiences from the participants. Further exploration was encouraged with these questions: Can you give me an example? Can you tell me of an incident? What was that like for you? Is there anything else you can think of that would help me to understand? I engaged the participants in dialogue in order that I might more clearly understand what this experience meant to them. The interactive sharing with the participants about their experiences allowed the description and its meaning to evolve as the interview progressed.

Participants

Individuals who had received a diagnosis of MS within the last twelve months were considered, using purposeful sampling. Inclusion criteria were individuals over 18 years of age and who have received a definite diagnosis of MS in the last year. Both genders were purposefully selected to enhance sample diversity. The sample size was limited to ensure manageable data. Five individuals with MS were recruited, three females and two males. The sample age range was 29-40 years. The time from symptom onset to diagnosis spanned a range of 6 months to 22 years. These five individuals with relapsing-remitting and progressive MS told their stories.

Interviews

The interviews were audiotaped and lasted between one and two hours. The participants were encouraged to explore their experiences during the time they had symptoms of an illness, both prior to their diagnosis with MS and to the time of the research interview. The interviews were initiated by open-ended general interview questions. Selected portions of the audiotapes were transcribed verbatim. At the end of the interviews participants were invited to tell me characteristics of themselves or of their life which would assist me in understanding their stories.

The interview approach was nondirective, beginning with a description of myself and a brief explanation of the research study. The participants were encouraged to tell their stories as they perceived them. This question was used to open the storytelling: "What was it like for you to experience symptoms of an illness and then to be told you had MS?" I encouraged expansion of their stories by asking them to recall incidents or to give examples. For example, questions such as: "What was that like?" "How did that make you feel?" and "Help me to understand" were used. Their stories were confirmed as important by telling them how they really helped me understand.

A second conversation by telephone or in person clarified and validated the descriptions, observations and interpretations of their experiences. This allowed further discussion and reflection of their experiences.

Data Analysis

The audiotapes were listened to repeatedly in order to grasp the essence of the experience for each individual who was interviewed. Van Manen describes this aspect of the inquiry as phenomenological reflection.[18] It is through this process that the researcher reflectively tries to see that which is not easily visible or noted in daily life encounters.

The interviews often divided naturally into time segments of experiences. Therefore, the main topics of their stories during the time of prediagnosis, diagnosis and postdiagnosis were used as broad areas when examining the data for themes. An incidental theme related to the interactions with health personnel also became apparent. Thematic aspects of the phenomena under study were gleaned through "the selective or highlighting approach."[18] As the stories were listened to, statements and phrases which appeared relevant to the phenomena were written down verbatim, when possible. Later, they were selected to be placed in the pertinent category: prediagnosis, diagnosis or postdiagnosis.

The Journey to MS: Through A Labyrinth Of Voices

The five participants in this study experienced the journey to a diagnosis of MS as a labyrinth which connected them to multiple voices and led them on various paths. The nature of their experiences spanned the time periods from before diagnosis, to diagnosis and following diagnosis. Central to the experience of MS are the voices that speak the name of the diagnosis, respond to the diagnosis and share the diagnosis with others. Four major themes (with subthemes) emerged from the data as revealed in the stories that the men and women told of their journey:

* Whispered Beginnings (Listening for Meanings and Creating Possible Answers)

* Echoes of Silence (Worrying, Wondering and Waiting)

* The Spoken Words (Hearing the Sentence and Telling Others Their Story)

* Recreating Voice (Claiming and Refocusing)

Whispered Beginnings

This theme sets the time frame for each individual as he or she recalled the onset of symptoms which were experienced without any knowledge of the future diagnosis of MS. For some, the beginning was up to twenty years ago, for others the beginning was only months ago. It was only in retrospect, that the initial signs and symptoms were recognized as "whispers" of the onset of MS. Two common subthemes emerged: Listening for Meanings and Creating Possible Answers.

Listening for Meanings

Participants recalled early intermittent and fluctuating symptoms which led them to seek out health care professionals, friends and relatives in order to uncover the reasons for their physical problems. For some, it was altered sensations, balance difficulties, limb weakness or visual disturbances. For others, dizziness or fatigue mimicked viral illnesses. Answers and treatments were not always specific nor helpful. The difficulties often disappeared over time. It was not uncommon for health care professionals to recommend treatment for symptoms of an unconfirmed disease. Appointments with physician specialists were often delayed and occurred when signs and symptoms of their condition were no longer obvious, giving the appearance of an illusionary illness on the participants' part. The recurrence or worsening of symptoms, however, caused participants to visit or revisit physicians and actively engage in discussions with themselves and others in order to understand what these problems meant.

Creating Possible Answers

In response to listening for the meanings of their symptoms, the participants through discussions with health care professionals or themselves would create possible answers for the disturbances they experienced. Some would embody the physician's reasoning of why problems existed and would try to minimize that cause; for example, stress and strain. Others would hide or undermine the disturbance by developing new ways to do things or by no longer engaging in certain taxing activities. The attempts at making sense out of the symptoms of the illness portrayed the intuitive desire of persons to maintain a semblance of normalcy in order to protect themselves and others from undue anxiety. As the participants responded to the internal and external questions about their symptoms, purposeful, thoughtful and logical answers were embraced in order to silence an inquiring mind and a changing body.
 Gable: My hands shake when I write ... it is very difficult to control....
 I can print, it's legible. Before I was diagnosed, I was forever trying to
 laugh it off, my balance problem, to being clumsy.... The balance problem
 was most noticeable because you don't write everywhere you go. So it wasn't
 simply something that came up. And when writing came up it was, "Oh, I'm a
 really messy writer!" or my wife would joke about Gable and his chicken
 scratch.

 Jen: Well the first time, I thought it was something just from repetitive
 using, continuous writing, whatever, you know how that works. So I just
 thought that's what it was. I put it off to carpal tunnel. But when the
 tests came back negative, and it went away, I never thought anything more
 about it.


Upon reflection, the study participants acknowledged that the early symptoms were probably hints of the genesis of MS. The whispered beginnings encompassed both listening for meanings and creating possible answers to explain the changes they had experienced.

Echoes of Silence

While experiencing symptoms which came and went to some degree, study participants were content to continue with life as before. However, often the time came when the next set of symptoms or a worsening of symptoms would be alarming and thoughts of serious concern became more prominent. Individuals were eager to confront the reality of their symptoms and actively pursued medical tests and opinions. The encounters with health care professionals were challenging and diverse. This often led them on paths which were convoluted, interrupted or delayed.

The period of investigation often spanned weeks to months. However, participants continued on with their normal life activities, as much as possible. Participants described various reasons why the most recent symptoms prompted them to seriously consider seeking further medical advice. The driving forces included interference with normal function and the inability to maintain family and social obligations. Often health professionals, friends or relatives would inquire about or affirm the presence of visible difficulties, which served to echo the participants' concerns.

However, the responses from health care professionals were often futile or empty, leaving the participants in a world of silence with no answers to their call for help and clarification for their symptoms. Diagnostic investigations and referrals to specialists were often delayed by days, weeks or months. For the study participants, the path to diagnosis rested on three subthemes: worrying, wondering and waiting. For the purpose of illustration, the subthemes of worrying and wondering will be combined, since they are often associated with each other in the interviews.

Worrying and Wondering

Participants recalled inner feelings of anxiety, panic and perplexity as their lives were interrupted. Some began to try self-help measures such as taking multivitamins, stopping smoking, drinking lots of water and exercising. Others tried to continue their regular tasks, only to find that the symptoms would prevent their accomplishment.

Study participants described periods of worrying and wondering about diagnoses such as tumors and cancer. The stories recounted are descriptions of inner anxiety, loneliness and silence as they waited for responses to their investigations. The responding voices of self and others did not speak an answer, only more questions.
 Gable: Basically it was six months that I had to wait to find out what the
 problem was and it was threatening to be another month away. That is
 extremely, frustrating because you just lay in your bed at night and say
 "what's wrong with me"? (whispered).... You spend time thinking to yourself
 maybe this is all in your head, maybe I'm dreaming it, maybe there's
 something I can do that I'm not doing." I started taking vitamins, drinking
 lots of water and doing all that nutritious stuff to see if that would ease
 the symptoms.

 Des: I called the doctor's office and said, "can you get me into see
 someone?" This seemed to drag on and on and I still couldn't function at
 home.... I remember trying to sort laundry and everything and it was all so
 fuzzy.... It wasn't said but everyone expected me to carry on here, doing
 the chores, making the meals and I kept thinking, "I can hardly see, how
 can I do this. This is ridiculous."

 Art: This was a two bedroom apartment and there were stairs going up. So I
 thought "hey for legs I'll just walk up and down stairs." I noticed my
 balance went really bad once I fatigued. It wasn't a question of doing what
 I want to, it was a question of I can't. Why?


The study participants described efforts made to obtain assistance, from professionals and themselves. Both avenues required a time of waiting before results could be voiced.

Waiting

The study participants described the waiting period, that is the time when they came to realize that there was definitely something wrong and had not yet received a confirmed diagnosis, as frustrating, prolonged, and filled with uncertainty. Interactions with health professionals were often far from therapeutic or rewarding. As participants recalled this immediate prediagnostic period, stories of negative interactions were an overriding theme. The encounters are highlighted with descriptions of powerlessness and low self-esteem from the participants. The positive experiences that were recounted are limited. Listening ears and supportive voices were missing. Echoes of silence were heard as participants voiced their fears, concerns and questions as they waited for investigations or consultations with specialists.
 Jen: It was four months, which was bad, from the time I saw the doctor to
 when I went for my MRI. I think it is very sad that they make you wait so
 long to really finalize the diagnosis. Because it took four months and the
 only reason why I got it done then was because at the hospital they got the
 new MRI machine and I went ahead and got the girls down there to put me on
 the list. Because originally the doctor I saw in the hospital, the
 secretary isn't that efficient.... This was the longest period of my
 life.... I don't think it is fair for anyone to have to go through four
 months of being "a yo-yo".... A yoyo is when you are not sure where your
 life is going. You can't make plans for your future without knowing the
 final outcome, because there is so much that could change either way. Life
 is at a standstill. You just don't progress any further till you finalize
 everything. To finish what was started.


The waiting time was not necessarily one of illness, instead it was one of questioning. Voices that were heard came from within and from others. However, the longed for supportive responses were spaces of emptiness. The echoes of silence were filled with wondering, worrying and waiting. Answers were anticipated but not yet spoken.

The completion of the diagnostic investigations led to further interactions with health care professionals. The time surrounding diagnosis disclosure was a critical moment for the study participants. The path to MS had reached a point of no return.

The Spoken Words

The participants discovered their diagnoses with unexpectedness and pain. The words came from health care professionals who revealed the results of tests in a variety of ways. Some individuals were alone, while others were with spouses or friends when the diagnosis was received.

The experiences described by the study participants of hearing the name of the diagnosis was coupled with obligations to tell family and friends. The words spoken by health care professionals "You have MS" became "I, who has MS" when participants told others the sentence and the story. The experience for the participants of diagnosis disclosure encompassed hearing the sentence and telling others their story.

Hearing the Sentence

The actual moment of being told "You have MS" was readily recalled by the participants. They described trauma-filled reactions such as "being in shock, feeling numb, and really stunned" when they heard the news. For some, the crisis of this response lasted for moments, for others it lasted days to weeks. The experience of being told the diagnosis of MS brought the study participants to a time of being "emotionally wounded."

There were noticeable empty spaces in the descriptions given by the participants. Interactions reflecting empathy were filled with stillness. Perhaps emotional support was absent or, the empathy conveyed by health professionals was not perceived as being given because of the emotional immobilization of the participants. Nevertheless, the sounds of the "sentence" became part of the silences which surrounded the time of receiving the diagnosis of MS.
 Des: It hit me like a bullet right between the eyes. I shouldn't have been
 upset as my sister has MS and she has been saying to me for years "Have you
 been tested? Have you been tested"? ... when they told me I had MS it still
 came as a shock to me. But I took it and I remember leaving the office and
 I was in shock.... I cried on the way home a little bit.... I felt very
 numb. I felt scared. I had just watched, a few months ago, the Annette
 Funicello story and seeing her at the end, she cannot hardly speak and she
 is in a wheelchair. My immediate reaction was "oh no! I don't want to be
 like her." I have a terrible fear of my sister being like that.

 Gail: I was stunned. I said to Graham' "just take me home." ... I didn't
 want to look at him, I didn't want to talk to him about it. I wasn't in
 control enough to even to discuss it with him at that point. I was stunned.
 Just really stunned.


For the study participants the answers to explain their symptoms were no longer created ones. The diagnosis of MS was revealed to them now through voice. They now needed to share the diagnostic revelation with others as "their story."

Telling Others Their Story

The time following the diagnosis was filled with a variety of concerns and considerations. For some, this included deciding on treatment options and for others learning to live with MS. All participants recalled telling the diagnosis of MS to others. The disclosure was accompanied by obligations of determining who else needed or desired to know. Family, friends and employers may be potential confidants. Themes such as the right time, place, person and reason to tell others the diagnosis were often expressed. For some of the participants, disclosure of the diagnosis to others was selective. For others, the diagnosis was not withheld from anyone who wished or needed to know. However, all the participants expressed the desire to be viewed by others as the same before and after the diagnosis. Coupled with the need to maintain a consistent view of self pre- and postdiagnosis, participants voiced the desire for reassurance that their confidants cared. The knowledge that others cared was part of the healing journey desired by the participants.

The experience of disclosing the diagnosis to others was not positive for all participants. Disclosure often brought with it loneliness as friends disappeared and pain as memories of the diagnosis day were rekindled. The responses the participants desired such as support, acceptance and a listening ear were not always obtained. Instead, the absence of words and the lack of supportive voices only served to enhance the penalty of the MS sentence, as participants told their stories to others.
 Des: I had a hard time telling my family. My mom called on the phone and
 wanted to know. I was very brave and actually quite calm and said, "I don't
 want to tell you on the phone" and she insisted. That was awful. I told her
 on the phone that I have MS just like J does. And she immediately got very
 defensive.... I dreaded telling them and I certainly didn't want to tell
 them on the phone.... That really bothered me. Thinking how I'm going to
 tell them or when I'm going to tell them ... I felt I had to tell J, my
 sister, who has it too but I couldn't tell her right yet because I still
 felt upset. Kind of emotionally upset, like I was going to cry if I told
 somebody. I had to wait till I calmed down.


The experience of receiving a diagnosis of MS and telling others about the diagnosis was one of sounds and silences. The words and sentences from health care professionals who disclosed the diagnosis were received by the participants with unexpectedness and pain. Health professionals and friends were noticeably silent as the study participants cried out for a "listening ear" and "support." The spoken words which were heard and then retold by the participants became part of the sounds and silences which created the new voice.

Recreating Voice: My MS Life Story

Following the diagnosis of MS, study participants recalled reflecting on their thoughts and feelings, once they knew the diagnosis. For some, telling others their story was part of healing the wounds. For others, the passage of time was also an important recovery theme.

Descriptions of the present and past life were often recounted by the participants as positive ones. The opportunities to "begin again" or "speak of the reason for my hope and strength" (faith in God) are described as reasons to be "OK with the diagnosis." The journey to healing had begun for those who sought to integrate the sounds of the diagnosis into their new life-world. Integrating MS into their life revealed thoughts of claiming the diagnosis and becoming refocused.

Claiming the Diagnosis

Participants described the changes they experienced in thoughts and feelings about life situations, since their diagnosis. They recalled losses and gains. The life changes they were now going to pursue included the diagnosis of MS and their personal definition of it. For some, this meant new ways to find work or pleasure and for others, it was being thankful for what they had. As the study participants revealed ownership of the diagnosis, new voices were responding.
 Gable: I am now in a position that I am not going to walk into a job, as I
 had been used to.... At that point in time, I realized I was not going to
 be able to do those things again.... Basically, I had to decide what I was
 going to do next as far as a career goes and I had to remember what was
 told to me: "That this disease would not kill me." So I would be living
 basically a normal life unless it came back. So basically right now, I am
 in the process of moving towards that normal life.

 Art: I was excited in a sick way. I was excited because I could learn to do
 everything again. I was at a beginning again. Hindsight is just
 incredible.... I believe my silver lining is I can do it all again. How
 many times have you said to yourself: "If I could just do it again I would
 do this or that." Well I can do it again.... I'm making lemonade.

 Gail: I know this is not a death warrant and I have so many other things
 that are positive in my life that I try to focus on.... I know we'll get
 through this. My husband is so supportive and my family is equally as much.
 When I think about it that way, I have got so many things behind me. The
 other thing is my spiritual belief and I know that I am getting very well
 taken care of. And I don't blame Him for this!


Refocusing

The participants described their plans and hopes for the future. The life ahead, although uncertain, was viewed as a new opportunity. The thoughts were one of hope and possibilities in life. The voices encompassed reconciling the past and reconsidering the future.
 Gable: Well, what I would like to do is get some help with: 1. getting a
 computer; 2. taking a typing and word processing course because my typing
 skills are way down. I mean the last typing course I took was in grade nine
 and now with my fingers being all over the place it is really looking
 horrid. So, what I want to do is get some skills there, and maybe get into
 advocacy or mediation and get into one of those two fields and see where it
 goes from there.

 Jen: I've adjusted. I take better care of myself.... We both are more
 considerate of each other.... We have changed our lifestyles to accommodate
 each other. I don't think an attack will come on from that now.


The collective experiences of individuals who learn they have MS support the idea of an ongoing process of moving along a common path to the diagnosis of MS. The individual's way down the path is unique and not necessarily straightforward. It can be likened to a labyrinth. The journey is confusing and the pathway often lonely and challenging. Many voices are heard along the route. They may be soft or loud understanding or indifferent. The voices may come from within or from others. There may be times of stillness. Confusion and losing direction is not uncommon as the network of trails increase or take a circular route. At different points, interactions with others occur. Helping and wounding voices can then be heard. The sound of healing and hope needs to be in the foreground as the "new voice" comes to life.

The path, however, does not have an end. The whispers and echoes may remain silenced, or find voice again. A refrain may be the sound beckoning a return to the labyrinth. Do voices sound anew? The chorus of "others" are challenged to blend the sounds and silences within a labyrinth of voices for individuals who journey with MS.

Discussion

In phenomenology, the reader is usually left to determine the fit and usefulness of the research findings. However, as a practitioner, the research has informed me on many clinical issues.

Prediagnosis

The prediagnostic phase may be viewed by health care professionals, family members and friends as insignificant, often due to the vague and mild nature of early symptoms. However, if the symptoms are identified as unimportant, the time to diagnosis may be lengthy. In the past this was not seen as detrimental. Now, however, there is some reason to believe that early intervention with interferons to prevent relapses may be beneficial to the long term outcome.[12] Therefore, a delay in diagnosis is not advisable and in fact speeding up diagnostic investigations is supported. So, one must ask, "Why do the whispers of the early symptoms of MS go unanswered?" I believe the problem is two-fold and encompasses rationalizations and the silent voices of women. As individuals experience the early symptoms of MS, the altered sensations and fluctuating occurrences are often explained away with common everyday events. The inconsequential nature of the symptoms make it easy for all involved to ignore or belittle them. Secondly, it is known that MS affects more women than men and it is not uncommon for women's symptoms of illness to be ignored. Robinson surveyed 900 patients with MS and found that the time from the first perceived symptom of the disease and the point at which the diagnosis was revealed was 4.2 years for all patients. However, the time to diagnosis was significantly longer for women than men (p=0.05).[14] Considering Robinson's findings we should be especially attuned to the voices of women, who experience the vague stillness of whispers.

Stories were filled with symptoms which are ambiguous, uncertain, variable and unpredictable. Therefore, it is not surprising that the emotional needs of these patients are not met and in fact may be ignored. In conjunction with the psychological needs, individuals may also experience physical demands which need attention. Even without a diagnosis to explain the difficulties, physiotherapy and occupational therapy assessments may be helpful in devising an exercise program and obtaining adaptive devices. De Souza and Ashburn argue that rehabilitation and specifically physiotherapy must begin with the diagnosis of MS and patients should be told the diagnosis of MS early.[4] However, it is important to realize that although the diagnosis of MS may be suspected, it does not always meet the full criteria as outlined by Poser et al.[13] Therefore, perhaps the argument should be raised that patients be told a diagnosis of suspected MS early. De Sousa and Ashburn also argue that the ambiguity and uncertainty surrounding the MS diagnosis affects the therapist as well as the patient and may create a dilemma for health professionals.[4] For example, physiotherapists may distance themselves from the patient in order not to inadvertently divulge the diagnosis. It is, therefore, not surprising that individuals with MS experience echoes of silence.

It is not uncommon for individuals with symptoms of a disease to be referred to multiple physicians before a diagnosis is made. This only intensifies the time of worrying and wondering. It would be helpful if general practitioners and emergency physicians were aware of which neurology specialists could best sort out the diagnosis of MS quickly. Often, a personal phone call shared between two physicians can facilitate timely and early intervention. A faxed or written request for a consultation may become lost in the paper shuffle of busy clinics and doctor's offices. Therefore, a mechanism to bring the person and their problem to life are needed in order to properly prioritize and coordinate appointments. Close scrutiny by a nurse or physician may be required in order to initiate timely investigations, record retrieval and appointments with multiple team members. The silence experienced by the participants can be filled with the activities of health professionals attempting to finding expeditious answers. While individuals await responses, we need to give voice to caring, concern and encouragement for those who are waiting, worrying and wondering in the echoes of silence.

Diagnosis Disclosure

Diagnosis disclosure was a painful and unexpected event for the participants. Although they experienced symptoms which were somewhat a mystery, being given the diagnosis was viewed by most as traumatic and by some as a relief. Litera-ture related to MS diagnosis discussions is limited. However, what is available does give insight to the thoughts, values and beliefs health professional have about divulging the diagnosis. One study by Gorman, Rudd and Ebers concluded that "a disparity existed between the patients' wishes and the physicians performance" when the diagnosis of MS was revealed (p. 217).[6] The majority of patients (52%) and close family members (62.9%) wanted to be told the diagnosis even when it was only suspected and they wanted full information. On the other hand, the time to diagnosis disclosure for many was lengthy. Robinson surveyed 1,000 patients with MS and reported that approximately 50% of patients waited up to four years after their first symptom to be given the diagnosis.[14]

In this current research study, both Jen and Des describe the "emotional disability" they experience now that they know the diagnosis. Des clearly found dealing with the diagnosis more difficult than living with the disease. She shared in the interview that "she had gone on for this long without knowing and still wishes she didn't know." Jen, also described knowing the diagnosis of MS as an emotional impediment. She described knowing the diagnosis as "having a weight on me all the time, it's always there in the back of my mind, hanging over me." For some, it is a relief to know that what they have has a name and is not terminal. For Gable, the fact that it was not cancer, such as a malignant brain tumor was "good news." For Art, the diagnosis gave him the opportunity to close the pages of one life which he did not view as favorable and begin a new one. However, the relief or opportunity provided by receiving an answer to the participants' difficulties also created dilemmas since there is no cure for MS and treatment is limited. Therefore, it is not unreasonable nor surprising that patients and health professionals view the optimal timing of diagnosis disclosure differently. It is important, however, to know what the obligations of health professionals are in disclosing, informing and supporting patients and their families with MS.

Diagnosis disclosure is not just one point in time, because most patients do not recall what has been said to them. However, it is the point in time when a relationship may begin. Therefore, I propose that the incongruency described by Gorman et al is not related to whether one should disclose the diagnosis, but rather it is a product of the resultant obligations to inform and support individuals and their families through the difficult weeks, months and years ahead.[6] It is not always easy to be empathetic toward patients and families when you know the disease course is progressive and may last 25 years or more. Recognizing this difficulty, it is imperative to put in place a team of experts dedicated to physically and psychologically aligning with MS patients and their families. From the findings of this study, I would also propose that individuals who are suspected of having MS receive ongoing intense emotional support. Mushlin, Mooney, Grow and Phelps surveyed 68 individuals with suspected MS, before and after a MS diagnostic work up, and found that those who had a positive work up and were told the diagnosis were "less anxious and expressed favorable feelings even though they faced the greater prospect of a chronic progressive disease" (p. 70).[10] Interestingly, those patients who did not receive a definitive diagnosis tended to be more anxious than reassured by the negative results.

Role of the Health Care Professional

Anxiety and uncertainty is evident in both the prediagnostic and postdiagnostic phases. Health care professionals need to mobilize support and institute techniques to assist MS patients and their families to deal with the stresses and fluctuations which accompany a diagnosis of MS. It is important for patients and their families to experience the first years of MS coupled with caring and consistent support from their MS team.

The participants in this research study reacted in various ways to hearing the diagnosis. The support and information received from health care professionals were not positively verbalized. During this time of crisis, emotional support and pertinent information needs to be shared by the person who tells the diagnosis. However, the neurologist, from whom most patients wish to hear the diagnosis do not necessarily have the skills or desire to meet the psychological and educational needs.[6] A mechanism needs to be put in place where support and information is available and given by a team of experts immediately following the disclosure of the diagnosis. Ideally, a team member should be in the room as the diagnosis is being told in order to assess the patient's emotional state and immediate informational needs. A consistent flow of similar information across disciplines helps to establish rapport and trust with the patient and their family.

Uncertainty is often discussed in the nursing literature with chronic illness and MS.[3,20] However, strategies to deal with uncertainty need to be highlighted. It is important to realize that uncertainty exists before and after the diagnosis is given to the individuals with MS and their family. What does all this mean for health care professionals?

We need to respond with empathetic voices to the sounds and cries for help, explanation, time and caring. The new voice created needs to be carried with echoes from "others" of reassurance and caring that listening ears and helping hands will be available as individuals diagnosed with MS tell and live their story.

Patient Disclosure

Coupled with receiving the diagnosis is the issue of disclosing the diagnosis to others. Perhaps for some, telling the diagnosis to others is difficult because they now need to make sense of this new "self" who has MS. Berman discusses mirroring as the interpretation of "ourselves being visually-based" and "made from the viewpoint of the other." Berman further expands these concepts when he states "human identity is heavily-shaped by the phenomenon of mirroring".[2] As the participants revealed the diagnosis to others, they were also saying, "Me, I have MS." In this telling, they may feel threatened and scared that others will leave them unsupported. There is a risk to disclosure for patients with MS; the possibility of being ostracized or criticized. For the spouses, their partner now has a new dimension and for the children, their parent is different. However, what this means physically and psychologically in each person's life is unknown.

Postdiagnosis

Following the diagnosis of MS, individuals embarked on the path of telling others their story. While telling their story, they claimed the diagnosis and refocused their lives. Story telling has many therapeutic values if the receiver has a listening ear, an empathetic nod or a caring touch. In the telling, the narrator thinks out loud in order to make sense of things or to problem solve. The telling also serves to include a reference to the future. The participants here discussed life plans, reasons to be happy, and shared a spiritual belief.

Refocusing the future encompasses feelings of loss in how they may need to do things differently. The gains may include seizing new opportunities, re-examining life values and being hopeful. This is the time of including "MS" in their new life-world.

It is during the following years that health care professionals are key players as they interact with MS patients and their families. Ongoing emotional support, medical care, and informational sessions are helpful. Their needs may arise urgently and sporadically. A case management or primary nursing delivery system may be the best option. It is not surprising that patients who are in clinical research trials are highly satisfied with their care.[7] MS research projects often span 2-7 years and during that time individuals are assigned the same research nurse and primary care physician. Undoubtably, this is an example of successful case management in the MS population. The nurse and physician deliver coordinated care across the life span and beyond the walls of the hospital.

Summary

This study describes the patients' experiences of having symptoms of an illness and then to be told the diagnosis of MS. The metaphor of a labyrinth of voices was used to illuminate the collective experiences. The themes revealed, included: whispered beginnings and echoes of silence in the prediagnostic phase, the spoken words in the diagnostic phase, and recreating voice in the postdiagnostic phase.

Information from this study promotes an understanding for health care professionals who cross paths with individuals experiencing early symptoms of MS. As the paths in the journey to MS intertwine with multiple health care team members, may listening ears and caring words connect the points of the labyrinth with hope.

Acknowledgement

We wish to acknowledge the Canadian Association Of Neuroscience Nurses, KCI Research Grant for financially supporting this study. We are also most grateful to the participants who shared their stories of their MS journey.

References

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Questions or comments about this article may be directed to: Wilma Koopman, RN, MScN, Nurse Practitioner/CNS, Multiple Sclerosis Clinic, University Hospital, 339 Windermere Road, London, Ontairo N6A 5A5 Canada.

Ann Schweitzer, RN, PhD is an assistant professor at the University of Western Ontario in London, Ontario, Canada. Copyright [C] American Association of Neuroscience Nurses 0047-2603/99/3101/0017$1.25
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Author:Koopman, Wilma; Schweitzer, Ann
Publication:Journal of Neuroscience Nursing
Geographic Code:1USA
Date:Feb 1, 1999
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