Getting Told: John’s Story
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Getting Told: John’s Story
John Stevens and Kimberly Fisher
University of Essex
Wivenhoe Park, Colchester CO4 3SQ
Phone (01206 873790; 01206 521633)
e-mail: stevjj@essex.ac.uk kimberly@essex.ac.uk
word count (including abstract and bibliography) 6,891
John Stevens and Kimberly Fisher
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Abstract
This paper examines an experience of being diagnosed with multiple sclerosis
through the methodology of auto/biography. Confronting an unexpected illness that has
changed your life is not easy, but this article explores how one author found a new sense of
identity through open and honest communication with doctors, colleagues, and family. The
process of learning to deal with a chronic illness is a deeply personal journey, and this paper
underlines the importance of using narrative approaches as one method for examining the
complexity of such a journey.
Getting Told: John’s Story
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“On Friday, 17 May, 1996, I was diagnosed as having Multiple Sclerosis”
This single event caused a greater change in my life than any other experience - a
major statement considering that I have spent a year driving through Africa and that my wife
and I were married less than two months prior to the date of my diagnosis. Upon receiving
this news, I had many thoughts, ranging from contemplating suicide to worrying I might
become unemployed and severely disabled or even die in a few years time – and I was only
28. My main concerns centred on the effects that knowledge of my condition would have on
those around me.
In addition to facing unwelcome changes in their health status, people thrust into the
“chronically ill” social category confront obstacles to gaining or retaining employment,
insurance, loans or other financial support as well as reduced social expectations of their
abilities. It is not surprising that many people facing such a situation experience swings
between a similar range of reactions from anger, to fear for the future, to loss of identity, to
resignation to changed expectations in life (Charmaz 1995; Bury 1991). The process of
learning to deal with a chronic illness is nonetheless a deeply personal journey. This article
explores the sociological issues arising during my journey through the methodology of
auto/biography.
Methodology
Personal histories and experience have held a place in sociological investigation since
1918 when Thomas and Znaniecki began publishing The Polish Peasant, a document replete
with life stories, letters and personal documents. Nevertheless, concern for the individual
remained largely sublimated as irrelevant minutia in the study of larger social phenomenon
until the latter end of the century, when Ken Plummer (1993), among others, advocated the
significance of documents of life. Mary Evans (1993) suggests that this “new respectability of
individual lives” in sociological investigation reflects a recognition that people routinely bend
proscribed social identities from gender to sexuality to religion (p. 6). The process of identity
formation, along with many other social phenomenon, argues David Maines, transpires as
John Stevens and Kimberly Fisher
people develop and tell stories.
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Consequently, Maines (1993) proposes that personal
narratives give insight into “the complexity of human relations and group life” (p. 26; 32).
The investigation of one’s own life story through what Judith Okely (1992) describes
as “self-awareness and critical scrutiny of the self” can reveal elements of human
experience untapped by more traditional sociological methods (p. 2).
While
autobiographical texts opened space for feminists to reassess sociological research
(Denzin 1989), the boundaries of autobiography have provoked debate.
While
reassessing diaries produced for Mass Observation, Dorothy Sheridan found that the
detail required to relate one’s own experiences during a day regularly entailed
accounting for the actions and motivations of others in a way which “is not, strictly
speaking, autobiographical” (1993, p. 32).
The inclusion of the perspectives of
multiple people in the telling of one person’s life story does not pose problems for Liz
Stanley (1993). Stanley notes that people do not accumulate life history in a vacuum.
While individuals may largely control the process of recalling and interpreting past
events, this process is also a social activity influenced by people with whom the
individual interacts. Thus, Stanley maintains, no firm boundaries separate the self from
others or the biographical from the autobiographical. In consequence, she proposes
that the process of examining and individual’s story is one of auto/biography (1993).
This article began existence as an assignment while I was an MA student in social
research methods. I started working on the essay one week after I was told I had MS. I
soon encountered literature informing me that the act of placing auto/biographical
material in the public domain can leave the author vulnerable to personal criticisms
which may have disruptive consequences (Hastrup 1992). While I felt ready to accept
that risk, I also found that the writing process itself heightened my anxiety and
depression, as it forced me to confront my oscillating emotions and fears for the future.
I then left the text in outline form for six weeks until I gained more control (at least
superficially) over my feelings.
Getting Told: John’s Story
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When I finally completed a draft, I asked my wife to proof-read it, which she did
reluctantly. With hindsight I should have warned her about the comments in the text on
suicide, as those greatly disturbed and upset her. I took a period of three more months before
returning to the essay. During this break, I experienced three more relapses, but I also began
to develop a clearer understanding of what was happening to me and was better able to reflect
on my position. The essay then presented the problem, not of how much of myself to put into
the text, but of how much I should take out. Several months after I completed the course, my
wife and I made several revisions to the essay to transform it into an academic article, but in
so doing, we raised a new dilemma of how to represent her contributions in the text. As the
focus remains on my own reactions, we decided the narrative would read more smoothly in
the first person. Stanley (1993) previously has noted that “the auto/biographical I” “will
differ systematically according to the social location (as a gendered, raced, classed,
sexualitied, person) of the particular knowledge-producer” (p. 49). Nevertheless, she defines
“the auto/biographical I” as “an inquiring analytic sociological agent” “concerned in
constructing, rather than ‘discovering’, social reality and social knowledge” (p. 49). In this
case the auto/biographical I represents two voices which have played an interactive role in
constructing social reality and knowledge, though the story centres on one person’s
experiences.
Living With Chronic Illness
Michael Bury (1991) suggests that the process of facing up to chronic illness involves
the re-writing of an individual’s biography to both develop a “sense of perspective about the
condition and re-establish credibility in the face of the assault on self-hood which is involved”
(pp. 455-6). While, as Evans (1993) suggests, people who critically reflect on their gendered
or sexualised identities may discover “a whole wardrobe of social identities to chose from” (p.
6), the person ejected from the ranks of the able-bodied does not have this luxury. Chronic
illness causes physical changes which interfere with the activities of daily living. Cultural
understandings of illness often lead the non-disabled to act differently toward people whose
John Stevens and Kimberly Fisher
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chronic illnesses produce visible physical change, and the chronically ill person has no
choice but to deal with these changed patterns of interaction. Even when their condition does
not produce visible change, people with chronic illnesses can find their understanding of
themselves transformed by the actions they must take to respond to the condition, by their
expectations of how others who know or who find out about their illness will respond, and by
restrictions on their ability to fulfil social roles they had previously performed (Kelly and
Field 1996, pp. 246-9; Bury 1991, p. 453). Moreover, Bury (1982) observes, chronic illness
brings both the people affected and their close associates into more direct contact with human
fragility and the inevitability death than they might otherwise have been (p. 169).
Narratives about chronic illness, argues Arthur Frank (1993), not only document
people’s physical experiences, they also reflect “the social construction of illness as a
rhetorically bounded, discursively formulated phenomenon” (p. 41). Illness narratives, in
contrast to self-help books, represent only themselves, but, argues Gareth Williams (1984),
who interviewed people with rheumatoid arthritis, “they symbolise, portray, and represent
something important about the experience of illness” (p. 176). Frank (1993) adds that the
placing auto/biographies of chronic illness in the public domain also allows others to see the
social categories available to people who undergo a health transition; and to enjoy “the pure
pleasure of honoring the voices of those narratives” (p. 49). Illness narratives begin with the
onset of symptoms (Williams 1984, p. 180), and this paper next sets the scene for my journey
through the diagnosis of MS.
Setting The Scene for the Journey
Over the 1995 Christmas holiday, I began to experience trouble with eye sight. I
consulted an optician and ordered prescription glasses in January, 1996, but the glasses
did not correct the problem. My optician referred me to an eye specialist. The
specialist found holes in my vision, and requested that my GP refer me for tests. I
waited in increasing anguish for several weeks before my appointment was arranged
for early March. The specialist concluded that I required an MRI (magnetic resonance
Getting Told: John’s Story
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imaging) brain scan. While my GP again delayed action, I began to develop numb
spots on my legs and around my waist. My fiancé and I flew to the USA in late March
with feelings of disgust and exasperation with the GP and the NHS.
When we returned as a married couple, the GP had still done nothing. Feeling
thoroughly infuriated, I transferred to a different GP in the practice, who treated me with
respect over the phone and arranged my appointment for the MRI scan. To my surprise, I was
scheduled for a scan in a private hospital in Suffolk. To a certain extent, I felt intrigued by
the opportunity to find out how “the other half” experience health care. Mainly, I felt relieved
and happy that something finally was happening.
A few days after this I saw my new GP in person for the first of many times. By this
stage my numb spots where getting worse and had extended all the way down the left hand
side of my body. I also began losing my balance, and fell down stairs at work, spraining my
ankle. I told her about these problems. She expressed interest, and asked me, “What do you
think is wrong with you?”. I remember this clearly because at the time it caught me off
guard. I offered a hesitant response that in the worst case scenario it could be a brain tumour.
She endorsed this view, and warned me to prepare myself for the worst. I felt two levels of
reaction. First, I expected that if I had a tumour, then surely it would be curable. Second, I
felt intrigued there might be something interesting wrong with me. Initially I did not tell my
wife about this conversation as I did not want to worry her. Then I started to worry myself,
and told her a few days later as I needed to talk with someone. Even so, I endeavoured not to
reveal the full extent of my fears.
The private hospital more closely resembled a hotel than an NHS hospital. I entered
a warm and nicely decorated lobby, then walked the plushly carpeted corridors, where I
encountered few other patients or medical staff, and noticed no one who seemed stressed or
rushed. The contrast could not have been greater with the District Hospital where I had seen
the eye specialist. In a Spartan and overcrowded waiting room, elderly men jockeyed with
each other to politely offer their seats to women with crying babies and elderly ladies, and
John Stevens and Kimberly Fisher
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staff appeared overworked and stressed. The private hospital offered refreshments, and
somehow even managed to avoid the hospital smells that linger in NHS units.
The MRI scanner consisted of a one meter square metal cube secured to the wall, and
an examination table, including head restraints to prevent patients from moving during the
scans, which was positioned below the cube. A technician strapped me to the table while
informing me that the test was done in waves. The first wave, he said reassuringly, would last
only 20 seconds. The machine made a thumping sound, and the first wave was completed.
The technician then informed me that the next three waves would last 6, 9, then 5 minutes
respectively.
By the time these waves finished, I had developed a headache from the
thumping of the mechanism, a stiff back from my immobile state, and an itch on my head,
which I was unable to scratch, and which seemed to worsen as I waited. A nurse then advised
me that she was about to administer an injection to allow the doctor to examine the condition
of a gland. I then had to wait for the injection to circulate, and endure an additional 6 minutes
of immobility under the thumping mechanism. Finally, the technician released me from the
table, and informed me that as I was an NHS patient, I would have to consult with my own
doctor for the results of the scan. He thanked me for my co-operation, but provided me with
no indication of what those results might hold.
I had to wait a week for my next appointment with the GP. I found the wait
reasonably easy, as I expected that whatever problem the scan revealed would be curable, and
that if the scan had detected an urgent problem, then I would have been informed on the
following day. My wife seemed to find this waiting period harder to handle, as she continued
to suspect something more serious was afoot.
Getting Told
“It’s not a brain tumour but it probably is Multiple Sclerosis” my doctor told me in
very sombre tone. I thought, “Shit, the way the doctor is looking means it must be serious”;
followed by “What is MS? I have heard of it, but know nothing about it;” and “Is it curable?”
Over the next half hour, my doctor informed me of two devastating facts: the illness follows
Getting Told: John’s Story
an unpredictable course, and currently there is no cure.
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As she talked, she tried
unsuccessfully to contact the consultant neurologist at the general hospital to gain
confirmation of her diagnosis. In the end, she asked me to wait in the main reception room
until he phoned back.
I sat in reception, noting the disgruntled looks from the other long waiting patients.
My appointment had lasted longer than a normal consultation, generating a back-log. I
wondered how I should feel, and how my wife would react. I then felt a strange sense of
twisted irony - now that there was something interesting wrong with me, how should I feel! I
also wondered how much longer I might have to live! The doctor came out again, and, to my
surprise, asked if I was OK before telling me that she had not yet received a phone call. We
agreed that I should go and tell my wife instead of waiting in the surgery. This conversation
provoked a variety of reactions among the other patients, some of whom stared at me with
expressions of pity and other emotions I could not read, some of whom looked worried, as if
hoping that they wouldn’t catch what I had from their previous proximity to me, and others
who seemed nearly painfully intent on projecting disinterest in my departure.
I found my wife and told her what the doctor suspected. She gave me a big hug. As
she knew nothing about MS, I told her the very little that I knew. She mainly projected deep
concern, but as she is a very hard person to read quickly her emotional reaction under the
surface was probably more complex and turbulent.
I returned to the reception area of the surgery. While I waited, I tried to no avail to
find a leaflet on MS among the medical information on offer. The people waiting for
consultations who had been present at my recent departure were giving me very quizzical
looks. Then I again saw doctor. After speaking to the specialist, she could now confirm the
diagnosis of MS. Then, to my surprise, she asked how my wife had taken the news, and
expressed concerned that she had not returned with me. The urgency with which she made
this inquiry made me feel guilty for not suggesting to my wife that she return with me, though
at the time neither of us had thought it would be acceptable for her to join me with the doctor.
John Stevens and Kimberly Fisher
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The conversation then changed to what would happen in the future: I would receive an
appointment with neurologist; I would return to the surgery for a full medical check-up; and I
could contact the MS Society for information and support. I perceived that my doctor’s major
concern lay in my own ability to cope with the diagnosis.
I again found my wife, and amidst tears and hugs, we talked about the situation. The
only concrete reaction of hers which I remember now was the determination with which she
said "we will fight this". We discussed strategies for finding out more information, and I
expressed a desire to travel up to my parents’ house that day to tell them the news in person.
Telling Others
The next people I told were the secretaries at my place of employment. In retrospect,
I think that I did this both because I wanted to be open about my condition with every one and
because I have a far closer relationship with the secretaries than any other staff. Their
reactions spanned a range which I would later observe when telling other people. One
expressed sorrow and amazement that “someone so young and active” could experience my
problem. A second person stayed quiet, and I was unsure if she had heard what I said. The
third person initially expressed sadness, then told me stories about people of whom she had
heard who lived in Cheshire homes and had developed bad eye sight as a result of MS. Her
stories disturbed me greatly at the time as I knew so little about the disease. My worry that I
might end up in a home for the disabled in the near future escalated. I hope that I did not
portray this fear at the time.
I phoned my parents to warn them that we were coming for the weekend to impart
bad news. I hoped not to disturb them too much, so I said nothing further, though later my
mother told my wife that my lack of explanation caused her to speculate about a number of
bad conditions which were worse than my actual predicament. I then set out to obtain more
information about my illness. I phoned the national headquarters of the MS Society. The
person answering expressed her regrets, took my name and address, and promised to send me
an information pack. I then headed to the library, where I found only one book devoted solely
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to this illness, Dr. William Sibley’s Therapeutic Claims in Multiple Sclerosis, which is one
of the most informative books on the disease and its treatment that I have found. While in the
library, I told a friend of my condition and to my surprised she gave me a big hug.
On the train up to my parents, we read sections of the book, and talked about MS.
Sibley’s book provided the first real information on the course which we might expect my
condition to follow in the future. The outlook was hopeful: MS is unlikely to prove fatal or to
prevent me from working in the near future. This knowledge helped to calm my nerves and
allowed me to sense that I could cope with my predicament.
I could see my parents faces as we walked toward their car. My father looked
extremely worried. After saying a quick hello, I told my parents that I had been diagnosed as
having MS. My mother seemed to react with some relief, as she knew some information
about MS, and as she had been worried that I might have a “more serious” problem. My
normally cheerful and talkative father, who then knew nothing about MS, appeared confused
and distressed, and said nothing until we reached their house around half-an-hour later. I
emphatically stressed to both of them that I only have a very mild case of the disease. I have
continued to say this to other people as well. Only time will tell if this is true.
We stayed at my parents’ house over night. I found that the stay helped me, as it
gave me a chance to make sure that my parents were all right. To demonstrate to them that I
was ok and not deathly ill, we took them out to a pub for a drink and supper. This action gave
them an opportunity to see me acting normally. My wife suggested that I enabled myself to
cope better that evening by looking after my parents, as, while I assumed the role of
comforter, I could not dwell on my own fears. That night, after my parents went to bed, I felt
drained and empty. I could barely drag myself to bed, and left my wife downstairs on her
own to phone her family in the United States. My brain felt so overloaded that I lacked the
ability to feel bad for not participating in that phone call, which I would have certainly done
had the problem not so centrally involved my being.
John Stevens and Kimberly Fisher
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The next morning, as we sat staring at our cereal, the phone rang. My wife’s
mother had been busily collecting reassuring information from the Phoenix branch of the MS
Society. She wanted to pass on the reassurance, and I think she raised everyone’s spirits, if
only mildly, as we all felt to numb to express a strong reaction.
The First Week
Over the next week, I drifted between an array of emotional states, but I cannot recall
a minute of that week in which I did not think about MS. My feelings ranged from fear to
deep gratitude and love for the constant support that I was receiving from my wife, to feeling
touched by simple acts of kindness. One secretary filled a card with a reflective inscription,
and mailed it to me on the Friday I had travelled to my parent’s home. This card awaited me
on our return on Saturday afternoon.
On Monday, when I entered the office, another
secretary gave me a bar of chocolate. She told me that she had been “thinking of me all
weekend”. I was surprised by the number of staff who talked to me at work to offer support
and condolences. Some of them had never talked to me before.
At the same time, I felt starved for information about MS. The package from the MS
Society did not arrive, and I had read what little information the library had to offer. I then
scanned the internet, and found a great deal of information, but this trove of data raised more
fears for me by reinforcing the absence of a cure or even an effective treatment for MS; by
emphasising the negative consequences of MS, and by informing me that in some
circumstances MS also acts as a catalyst for mental disorders.
My wife phoned the MS Society again, and a representative came to our house the
next evening. This woman brought several leaflets, offered some useful advice, and informed
us that she perceived that the MS Society had developed an upbeat mood about the prospects
for medical advances in the near future.
Following this visit, I began to feel more reassured, but this upswing in my attitudes
proved short-lived. I had been on a subject register for the Psychology Department to earn
extra money for two years. That week, a friend in Psychology asked if I would do a
Getting Told: John’s Story
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experiment which required me to evaluate my present level of confidence and my
perceptions of my prospects for the future, then tested the speed of my reactions to images
flashed on a computer screen. This experiment made me think quite deeply about my feelings
and how they had changed over the last week. I had done similar reaction time tests for
Psychology before, and I could sense that my level of performance had declined significantly.
As a result, I began to worry again about the degree to which the disease had impaired my
ability to function as a professional and as a person in less formal social settings. I perceived
an irony in the fact that I had developed one incurable disease while working on a project
about the transmission of another, AIDS.
Over the second weekend after I learned of my diagnosis, I started writing the essay
which would later serve as the basis for this text. The process of self-reflection sent me into a
depression, during which time I semi-seriously contemplated suicide. I did not discuss this
with my wife, and she later read about this contemplation with horror when she edited my
draft. I am now certain that she did not realise the depth of my depression at the time, though
it was she who cheered me up and got me back to thinking positively about life that weekend.
Continuing Shock Waves
Over the subsequent weeks, several thoughts have floated around my mind. I
mourned the loss of my ability to travel in parts of the third world, as I could risk further
attacks from receiving live vaccinations. The dreams of future adventures I concocted while
driving from London to Johannesburg will now remain unfulfilled. I worried over where the
future would lead me. I worried over my ability to acquire insurance and mortgages. I
pondered whether or not I wished to pass my genes on to children in case they got MS. I
wondered whether I should start my own business, or take a safer and certainly less stressful
path of continuing in academia. I tried unsuccessfully to answer these questions by taking a
lot of long evening strolls. Time will be the only cure for these and many other questions.
I needed two months of frustrating failed experiments to learn how far I could push
my body before I suffered fatigue. Feeling determined not to succumb to MS, I ploughed
John Stevens and Kimberly Fisher
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through three consecutive and stressful twelve-hour days of work at the university. The
experience left me completely drained, and eventually I had to take two days off to rest and
recover. Though I had read and heard from several sources that people with MS suffer from
fatigue, I had to grapple with my own experience before accepting this message.
The local branch of the Multiple Sclerosis Society helped me greatly through a short
course called “Getting to Grips with MS”. This six-week course caters to small groups of
people who are newly diagnosed and a family member or friend. This course enabled me to
meet people in a similar situation to myself and provided a great deal of information on
subjects ranging from the benefits system, to scientific research, to complementary medicine.
Time has been the major component in my process of coming to terms with MS.
Expanding on Points
I have made a policy of being totally open about my MS, telling other people about it at
the first opportunity. I also chose to tell most people face to face, so I could gauge their
reactions and put them at ease since I have few outward signs of disability. Those
reactions which upset me most were cases when people told me stories about other
people they knew with MS who were more disabled than I was at the time, or when
people related cases in which others they knew had recovered from a cancer for which
scientists had only recently developed a cure. While I suspect I was told these stories
so that I might look on the bright side of my condition, the stories instead reinforced
my anxieties about my future and underlined the absence of a cure for MS. As I have
moved farther away from the period of diagnosis and learned to live with MS, however,
I no longer feel such reactions to stories of other people’s medical circumstances.
Most of the people I spoke to had heard of MS, but very few people knew anything
about it - even though it is the most common neurological disease and affects 1 in 800 people
in the UK. To a certain extent, others limited knowledge after my diagnosis worked in my
favour. When my parents reacted badly, I was able to massage the information and try to put
them at ease.
Getting Told: John’s Story
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Even so, the process of uncovering information about MS and relaying it to others
with whom I interacted forced me to re-examine how I classify myself. One evening, about
two weeks after my diagnosis, I was performing routine house tasks while listening to the
Radio 4 program “Does He Take Sugar”, which addressed issues for people with disabilities.
The program previously had served as little more than interesting background sound for me.
That evening, while I listened to a panel debate about how disabled people should classify
themselves, it dawned on me that the program’s target audience now included ME! I realised
that I did not know if I should classify myself as being “able-bodied but ill”, or “disabled”.
The literature addressing identity among people with MS paints a gloomy picture.
Mazza, Caviglia and Crisi (1994) conclude that people with MS and epilepsy protect their
sense of self by repressing thoughts about their condition or withdrawing from normal social
relations. Riessman (1990), who interviewed a man with MS whose wife divorced him when
she no longer felt able to tolerate her husband’s condition, praises her respondent for looking
on the bright side of his circumstances, though I am not convinced that his positive attitude
did much to address his physical problems complicated by his loss of both physical and
financial support as he re-entered the single world. Research among chronically ill men in the
USA has found that many find that illness challenges their sense of masculinity (Charmaz
1994; 1995).
The MS Society itself has expressed concern over the identity issue.
The
September/October 1996 (issue 9) of the society magazine MS Matters included a survey
asking members if they see themselves as “PWMS” (People with MS – the term of preference
within the Society), “sufferers”, “patients”, “victims”, or another classification. I would not
describe myself as a “victim”, as I do not see myself as disempowered by an external force. I
would only use the words “patient” or “sufferer” in specific contexts (when receiving medical
treatment for the former, and when experiencing an attack for the latter). I ticked the box next
to PWMS as I find this term least loaded with stereotyped meaning. Though “people with
MS” functions as a convenient label for use in articles in MS Matters, I would not use this
John Stevens and Kimberly Fisher
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term when describing myself to other people. I feel uncomfortable by the prospect of being
pigeon-holed as a person whose being is largely shaped by a medical problem. By the time I
finished this paper, I had composed a classification for my self of currently able bodied but
chronically ill, but first and foremost, I want people to see me as John, not as a disability
label.
Observations on Doctors’ Approaches to Informing Patients
The relationship between many doctors and their patients with chronic illnesses can
be uneasy. Imparting bad news is difficult, especially when the news comes as “a profound
shock” (Bury 1982, p. 171). Bury (1991) also found that some chronically ill people partly
blame their doctors for contributing to their distress by failing to provide information at a
pace which the sufferer retrospectively deems would have been appropriate (p. 458). In
fairness to doctors, however, MS produces symptoms similar to those found in other
conditions, like stroke, and is therefore difficult to diagnose (Sibley 1996). The consultant
neurologist whom I have seen has further noted that he finds it difficult to strike a balance
between breaking the news to someone as soon as possible and avoiding worrying someone
unnecessarily by telling them they might have MS when they later turn out to have a more
easily treated condition.
My GP approached the conveyance of the bad tidings with honesty, frankness and
information. My neurologist endeavoured to prevent our initial conversation from becoming
entirely morose by injecting light-hearted breaks into our discussion, such as testing my
visual ability with a chart featuring a encounter between Thomas the Tank Engine and a rude
engine.
Both doctors approached the situation directly and openly.
I have since read
accounts of other people whose doctors avoided discussion of the central problem, leaving
patients to discover their diagnosis by reading their records when the doctor left the room, or
by comparing their symptoms with information they acquired from the Internet. I would have
found my situation more difficult to handle had I felt that I could not trust my doctors.
Getting Told: John’s Story
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A different brush with the medical establishment left me enlightened about the
stress doctors experience when informing patients about the discovery of MS. I arrived at a
follow-up appointment with the eye specialist who initially had requested the MRI scan. As I
entered his room, I noted that he sat unnaturally erect in his chair, with a stony expression on
his face. His eyes looked worn, and I could sense that his stress level was high. I assumed
his condition reflected the large queue of disgruntled patients in the overcrowded waiting
area, and the fact that he had fallen over an hour behind schedule. I retrieved a list of
questions about the impact of MS on vision from my pocket, and sat down. The doctor stared
at me, and produced his own list of points to discuss, but did not talk, as if he was anxious for
me to initiate the discussion. I said, “If you don’t already know, I have MS”. He visibly
relaxed, sank back into his chair, and cheered up. He expressed his relief that he did not have
to tell me the news. We then proceeded to have a open, honest and more relaxed conversation.
I suspect that he also felt relieved since he had originally scheduled an hour to meet with me
so that he could explain what MS is. As our meeting in fact only lasted twenty minutes, he
was able to partially clear his backlog after I left. I suspect that, at least internally, many
doctors feel the stress and unease exhibited by the eye specialist. Informing people that their
lives will dramatically change, and not for the better, and the uncertainty over how people
will react to such news, cannot be easy. Nevertheless, I feel that the honesty, frankness, and
informative approach of my GP and the neurologist provide the best base for long-term
communication between the doctor and the patient.
My after care has primarily been provided by the local branch of the MS Society,
whose members have phoned me at home to ask how I was doing, and who invited my wife
and I to attend the “Getting to Grips with MS” which they organise. The Neurological Unit at
the local hospital has served as my other major source of after care and information. The unit
provides medical consultations, physiotherapy, and advice on diet, continence, benefits, and
mobility, among other things, in one place to all people with neurological problems. This
John Stevens and Kimberly Fisher
18
highly acclaimed unit, the first of its kind in Britain, had been set up not long before my
diagnosis.
In some respects, I was fortunate to learn that I have MS while living near an
innovative neurological unit, a top neurologist, and active branch of the MS Society. Other
people who do not enjoy such support may well face difficulty dealing with both the medical
problems and change of personal and social identity that arises from the diagnosis of a
chronic illness. It is a great shame that provision of after care differs considerably around this
country
Concluding Points
Writing an auto/biography of my diagnosis of MS has proved a therapeutic means by
which I could come to grips with my illness. Riessman (1994) also found that her interview
with a man with MS enabled him to achieve a “positive self-image through narrative retelling
of key events in his biography, healing discontinuities by the way he structures his account in
interaction with the listener” (1199). Both auto/biography and interviewing may help other
people with non-medical crises, though I do think that the process of writing or telling an
auto/biography is most useful for someone who is personally affected by the crisis. Such a
project entails dangers for the author/respondent, not only from how other people might use
the final text, but also from the process of confronting a painful reality. Frank (1993)
observes that “people change their lives by telling them through narratives” (p. 42), but for
that change to have a therapeutic effect, the author (or respondent) would be wise to
acknowledge these dangers and to establish a support system for coping with them.
I have found that my decision to be open about my condition from the day of my
diagnosis has helped me to come to terms with my changed status. I gained further
confirmation that openness was the right decision for me when, some time later, I met
another person with MS who had chosen secrecy. This person expended considerable
energy hiding the diagnosis and symptoms from family, friends and people at work.
While we shared uncertainty for the future of our health, this person faced additional
Getting Told: John’s Story
19
anxiety from speculating about potential scenarios that might arise if the secret
became exposed. Nevertheless, I found that writing this auto/biography has not been
an easy process. It therefore seems appropriate to conclude this article in the same way
as I started with a personal reflection: “It’s been a hell of an experience”.
John Stevens and Kimberly Fisher
20
References
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(2) 167-182.
Bury, M. (1991) The sociology of chronic illness: A review of research and prospects
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Charmaz, K. (1995) Identity dilemmas of chronically ill men. in D. F. Sabo and D. F. Gordon
(Eds) Men’s health and illness: Gender, power and the body (pp. 266-291). London:
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Denzin, N. K. (1989) Interpretative biography: Qualitative research methods series 17
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Evans, M. (1993) Reading lives: How the personal might be social Sociology, 27 (1), 5-13.
Frank, A. W. (1993) The rhetoric of self-change: Illness experience as narrative The
Sociological Quarterly, 34 (1), p. 39-52.
Hastrup, K. (1992) Writing ethnography: State of the art. In J. Okely and H. Callaway (Eds)
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sociology The Sociological Quarterly, 34 (1), 17-38.
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Neurologia e Psichiatra, 55 (4), 791-795. Note: I reviewed the English abstract of this
article supplied by the authors to the Silverplatter CD-Rom citation service
PSYCHLIT.
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21
Okely, J. (1992) Anthropology and autobiography: Participatory experience and embodied
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Autobiographical Note
John Stevens works in Computing Service at the University of Essex (Wivenhoe Park,
Colchester, CO4 3SQ; stevjj@essex.ac.uk). On the side, he conducts research into
living with chronic illness and social networks. Mr. Stevens is a voluntary sector
representative on the North Essex Joint Consultative Committee co-ordinating local
services for people with disabilities.
Kimberly Fisher works in the Institute for Social and Economic Research at the University of
Essex (kimberly@essex.ac.uk). Her research interests include tracking social and
financial change following health transitions, evaluating services provided to people
with MS, leisure trends in the UK, and gender issues. Dr. Fisher also is a member of
the expert group of the Measuring Success Award Scheme for providers of health
John Stevens and Kimberly Fisher
services to people with MS, co-ordinated by The MS Society of Great Britain and
Northern Ireland.
22