Contours of Contestation in Illness
Narratives about Chronic Fatigue
Pia H. Bülow
Department of Communication Studies, Linköping University, SE-581 83
Linköping, Sweden, piabu@tema.liu.se
Abstract By storytelling, people narratively reconstruct their story of life to
make it comprehensible and coherent. In that sense, storytelling as well as
narratives about one’s life is enormously important for one’s identity. Since
a central question for social scientists during the last four decades has been
how people’s sense of self is influenced by their experience of chronic
illness, narratives about chronic illness have become an important source for
research. In this chapter, illness narratives about contested illness focusing
the contours of contestation in stories about chronic fatigue are studied. This
analysis, based on interviews with 14 CFS sufferers, shows that the story of
illness includes various aspects, like the narrative structure and stories about
the self that seem to be linked to the contestedness of this illness. The
structure of these illness narratives shows the need for legitimizing when
suffering from a contested illness like chronic fatigue. One essential function
of these stories about the self seems to be sustaining the storyteller’s moral
status in spite of an illness that in many situations is contested.
Introduction
Telling one’s story about personal illness is an important resource to
make sense of chronic or severe illness. By storytelling, people narratively
reconstruct their life story, making it comprehensible and coherent. At the
same time, people, through their stories, say something not only about illness
and life but also about themselves. In this way, stories work as a presentation
of self as well as of illness and consequently illness narratives have, for the
last two decades, become an important source for social researchers
interested in the experience of illness. In this field, a lot has been written
2
about the way chronic illness affects the self and narratives about the self.
However, one kind of illnesses, or one aspect of suffering, which has been
studied to a lesser degree, at least from a narrative perspective, is contested
illness, that is, illnesses which tend to be regarded as less legitimate or “real”
in the medical realm as well as in everyday life. Examples of such illnesses
are chronic fatigue syndrome (CFS), burnout, temporomandibular joint
(TMJ), repetitive strain injury (RSI), and fibromyalgia. It sounds reasonable
that the experience of such illnesses have influences on people’s sense of self
and of how they tell their story about illness. But in what way are the
contours of contestation discernible in stories about the illness and by the
way they are told? What kind of stories about self are told in these narratives
about contested illness? In this chapter, I will explore illness narratives about
chronic fatigue dealing with these questions about how people talk about
their illness and how they present themselves.
The self in chronic illness
During the last four decades, social scientists have been studying how
chronic illness affects people’s sense of self. The British sociologist Michael
Bury’s (1982) description of chronic illness as a disruption of biography has
become a model for conceiving crucial life events like severe illnesses as
something dividing life history in terms of before and after (cf. Becker,
1997) 1. This image of disruption involves the need for reconstruction.
Corbin and Strauss (1987) describe the biographical work which has to be
done by affected persons in order to reconstruct what the authors term the
BBC chain; Biographical time, Body and Conceptions of self.
In two early works, Kathy Charmaz writes about loss of self (1983) as
a social consequence of chronic illnessan experience which leads to the
struggle for a (new) self (1987). In the same vein, Karen Yoshida (1993)
describes the reshaping of self for people who sustained traumatic spinal
cord injury as a pendular reconstruction of self and identity in which people
moved between five predominant identity views in their strive to reach
balance and “the middle self.”
Other research connected to the self has been studies about stigma
(Goffman, 1963) and stigmatization. According to Peter Conrad (1987), concepts like stigma confront us with the meaning of illness“Why me?”,
“What have I done to be stricken with this?” These are important questions
for studies about contested illnesses. For people suffering from a contested
illness, it is not the pain-or the fatigue-that seems to be stigmatic (Hilbert,
1984). It is how the symptom is communicated, emanating from the dilemma
people are facing when suffering from something which is “unfamiliar as a
cultural object” (ibid. p. 373). In studies about CFS (Ware, 1992; Åsbring &
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Närvänen, 2002) and chronic pain (Honkasalo, 1999), the potential
stigmatization is demonstrated by the way interviewees describe the action
taken by their physicians, their own reactions to this and how they
responded. Norma Ware (1992) distinguishes between two kinds of disbelief,
trivialisation and delegitimization by others. In the first case, the personal
feeling of illness is rejected as symptoms of a disease, in the other, illness is
psychologised and stated to be “all in your head.” Illnesses that are regarded
as psychological are also seen as closer to one’s self and being
psychologised means that people might feel responsible for their own illness
(Kirmayer, 1988).
Narratives, illness and the self
Drawing on Bury’s (1982) concept of disruption, Gareth Williams
(1984) shows how people realigned present and past and self with society
through what he called a narrative reconstruction. Since then, illness narratives have become a large field within social science (cf. Hydén & Bülow, in
press) including studies concerning the narrating of the self (cf. Capps &
Ochs, 1995; Frank, 1995). This kind of meaning making narration is not
something that concerns the storyteller alone. In this narrative line of
research about the self and illness, personal narratives about chronic illness
are analyzed as a kind of presentation of the self (Goffman, 1959), The self
is thus considered as a discursive resource which might be used for different
purposes. One example is Mary Horton-Salway’s (2001) analysis of a story
about CFS, co-narrated by the ill woman and her husband. From a discursive
psychological perspective, this story is interpreted as an attributional story
which is linked to identity and that works to construct illness as a physical
disease. Another example is Williams’ (1993), analysis of an elderly
chronically ill woman’s story about her everyday life with a chronic illness
who, by presenting herself as competent and capable, formed the story as a
pursuit of virtue. In a similar way, Cathy Riessman (1990) shows how a man
suffering from multiple sclerosis chooses to present himself as a competent
parent and a good husband neglecting his apparent disability while being
confined to a wheelchair. Dealing with the presented self, the self becomes
something which not only might change because of illness, but which might
alter in different contexts and thus possibly becomes one of many different
ways to present and experience self. Using a narrative approach, Charmaz
(1999) lately discusses the moral claims people express through their stories
about chronic illness. She argues that suffering is a profoundly moral status
and that stories about suffering, “reflect, redefine, or resist such moral
status” (ibid, p. 367).
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The study
The following analysis is based on interviews with 14 persons
suffering from chronic fatigue. Half of these persons were interviewed on
three occasions, six of them participated in two interviews while one person
was interviewed at length on one single occasion. The interview study was
preceded by an ethnographic study of a group activity arranged by a medical
clinic specialized in CFSa so called patient school (Bülow, 2004; Bülow &
Hydén, 2003b). The interviewees were all former participants in this patient
school, although they come from three different groups. The school included
both lectures about CFS held by medical professionals and group talks
guided by a nurse. In most cases, the opening interview took place about six
months after the school was finished. The longest period to elapse between
the patient school and the last interview was two and a half years. Most
interviews were conducted at the interviewee’s home. They lasted for about
one hour, were tape-recorded and later on transcribed verbatim.
The youngest person was about 30 years old and the oldest about 60.
The average age at the beginning of the school study was 41.5. Four of the
interviewees were men. The major part of the interviewees (12) had got the
diagnosis CFS before participating in the patient schoolsometimes together
with other diagnoses like fibromyalgia, burn-out or depression. Two had got
the diagnosis idiopathic fatigue since they did not fulfill the right number of
criteria for reaching the diagnosis CFS. However, one of these two got the
diagnosis CFS after visiting another doctor between the two interviews while
the other person did not try to reach the level for getting the diagnosis CFS
during the study. Ten of the interviewees had full-time sickness benefit,
and/or temporary or permanent disability pension, when they began the
patient school, two achieved part-time sickness benefit and two interviewees
were full-time workers. At the last interview, three persons had gone from
sickness benefit to temporary or permanent disability pension, three got a
lower degree of sickness benefit than at the beginning of school (one of them
now working full-time) and eight interviewees stated unchanged degree and
form of sickness benefit, temporary or permanent disability pension– two of
them were the two full-time workers. To preserve the anonymity of the
interviewees, all names of persons and places as well as other personal
details have been changed.
The Analysis
Illness narratives are formed by the experiences individuals get from
their history of illness and as a part of the life story, but also from the context
in which these experiences and life stories are a part. From this perspective, I
5
have been influenced by Elliot Mishler’s work on interviews (Mishler, 1986)
and his narrative studies of identity (Mishler, 1999). Thus, I have thought of
both interviews and narratives as co-produced by both speaker and listener.
This means that it is possible to analyze an illness narrative from various
perspectivesfrom the content of the story told, from the way this story is
told and from a here-and-now perspective in which the interaction between
the interviewee as a storyteller and the researcher as a listener becomes
central.
Following Mishler (1999), I have used a case-centered model of
analysis and considered stories as identity performances. This means that the
analysis emanates from the individual stories about illness. The interviews
with each interviewee have been regarded as parts of the storyteller’s life
story (Linde, 1993) from which it is possible to pick up individual short
stories about special events. Due to this, I use stories and narratives in two
different ways: the entirely interview/s as a story and stories about special
events which are presented in the interviews. In the first case the interview
narrative consists of different episodes as well as descriptions and listings
that together form the story. In the second case, the stories are more welldefined and have a form which corresponds with the internal structure of
spoken narratives described by Labov & Waletzky (1967) comprising of
abstract, orientation, evaluations, resolutions and at the end a coda. Since the
analysis presented here is based on both these kinds of narratives, single
extracts from an illness narrative will not always have the form of a story in
which it is possible to discern an act and a plot. In the analysis, which is
divided into two sections, I will discuss the content of the stories as well as
important interactive aspects of storytelling. I will start by presenting the
major parts in the illness narratives about chronic fatigue and what these
show about contestation after which I will move on to a more narrow
analysis concerning different stories about the self and how the storytellers
present themselves. Finally, I will conclude the chapter discussing the
contours of contestation, drawing on the presented analysis.
Major parts in illness narratives about chronic fatigue
From the lengthy connected stories about the time before the patient
school, one can discern some important parts which seem to be typical for
illness narratives about chronic fatigue: the long-way-story about the pilgrimage through medical investigations, the diagnosis and the genesis of illness. These parts did not always appear in this order in the interviews. This
ordering is rather an analytic description made from the questions the
storytellers seem to have asked themselves about their experiences of illness.
Thus a pattern appears in which the search for an answer to the question
6
“what is it I am suffering from?” leads to (usually) a very long story about
medical investigations, contacts with the health care system (and sometimes
with complementary medicine), with employers and the social insurance
office, all of which together form the theme of the “long-way story” named
by one of the interviewees.
The “pilgrimage”
Jill, a woman in her forties gives a summarized version of her “long–
way story” as an “abstract” to the whole story about her illness (cf. Labov &
Waletsky, 1967).
Jill:
eh I suppose I first got sick ninety-four in fact
in fact ninety-four .h but I didn’t report myself sick until ninety-six in
January
And then during the years ninety-six, ninety-seven, ninety-eight .h ninetynine - four years then I was swirling around at different departments. As
many as there were kind of looking for what was wrong.
And they didn’t find anything wrong actually.
No I sort of only got more problems really from all the check-ups they did.
In its condensed version, this abstract shows several things typical for
the narratives in my study: the uncertainty about onset, the long way of
searching and the many times nothing was found. Most of the interviewees
in the study tell, just as Jill, about fatigue as a symptom which sneaks up on
them and which eventually becomes a problem they seek medical care for. In
Jill’s story, this is noticeable by her vague statement about when she first got
sick: “I suppose… ninety-four in fact.” That she did not report herself sick
until two years later could be a sign of the difficulty to decide when tiredness
is out of the normal, something other interviewees express more clearly, like
Joanna below:
Joanna: So it took a very long time. Actually it took right up to ninety-six ninetyseven before I realized that maybe not- that it was something that wasn’t
normal. (Pia: mhm)
Because I always had something to blame it on
or I thought that it was like tiredness that I thought it was normal that I just
needed more sleep than others ((gives a very short laugh))
or than most others and so on
So I’ve always had something to blame it on.
It is the difficulty to decide if what oneself is experiencing is out of
normal, or not, that seems to be of importance for the decision to seek care.
In both interviews with Joanna, who is about thirty-five years old, she talks
7
about a long period of difficulties before she realized that what she felt was
not normal. Before that, she had always blamed her tiredness on something
else than illness.
The other thing typical for the illness narratives in the study is the description of a long time looking for explanationsa kind of pilgrimage of suffering (Reid, Ewan, & Lowy, 1991). This time often included, as it did for
Jill, encounters with many different doctors and medical specialists and the
experience of answers like the one Jill summarizes this way: “and they didn’t
find anything wrong.” Thus, this time often includes the feeling of being
contested.
However typical for the narratives in this study, this kind of
uncertainty and long time of searching can not alone describe the particular
experience of contested illness. On the contrary, the same can be found in
narratives about a lot of chronic illnesses. Bury (2000) even describes
uncertainty as a key concept in the experience of chronic illness.
Diagnosis
An experience that seems to be connected with the pilgrimage is the
way the long-way-story is described to end. Quite a few told stories in which
the long time of searching for answers ends rather suddenly when the
storyteller meets a new doctor who shows a renewed interest in the suffering
and whose commitment results in either a diagnosis of CFS or a letter of
referral to a specialist.
James: no but then- (.) e:h (.) spring ninety-eight then. Ninety-nine.
Pia:
Last spring? The spring this year?
James: No ninety-eight I was there again (at his doctor) and complained.
But then he didn’t have time (.) eh my family doctor
so then I got some kind of extra doctor they had there who ehum (.) well
he did more or less the same thing as the family doctor had done before
but he was a bit more careful
/…/
And then he wrote a referral letter there (the medical special unit for CFS)
and eh (.) well it was lucky that I met him then instead of my ordinary
doctor.
These stories are commonly told as a kind of turning point since
these encounters make the difference between the time of the pilgrimage and
the time when they got a name for their illness. Many interviewees talk about
theses stories as lucky coincidences while others tend to become more active
agents who, for instance, suggest the doctor to write a referral letter to the
medical special unit which the teller had read or heard about.
8
The stories about getting the diagnosis are less elaborated. Typically
however, receiving the diagnosis of CFS was associated with the feeling of
relief and to at last get a name for the illness.
Jessica: But the second time when I went to X (the medical specialist) and got this
confirmed than I felt- I felt trusted by someone
and I became confirmed as a patient.
And then I became happy- I actually became happy because of that.
It sounds sort of odd but I was happy to get a diagnosis.
Making an account about the possibility that her feelings of joy might
sound odd, Jessica describes how she was happy to receive the diagnosis.
This shows the exculpating effect a diagnosis seems to have in contested illness. Jean, another interviewee, describes that before her diagnosis she could
not explain her problem and that she felt not really trusted. The diagnosis for
her meant that “then some kind of peace spread out” and that she, after getting a name for her illness, was able to move on. Instead of experiencing the
diagnosis as a disruption, Jean saw it as an end to in the history of searching.
This interpretation of the significance of getting a name for an illness
is strengthened by the way stories about not receiving the diagnosis is elaborated and explained as misunderstandings. In one case, the interviewee
explains that the communicative problem can be found within herself
“unfortunately I gave the wrong answers.” This woman got the diagnosis
later from another doctor. In another case, the interviewee asserted throughout the three interviews that the doctor had missed “the missing criterion” in
the illness history told at the medical interview.
The genesis of illness
Even if the diagnosis of CFS marks the end of the long-way-story
through medical investigations and examinations, the diagnosis at the same
time seems to lead up to new questions concerning the self and one’s life.
What kind of person am I who have got this kind of illness? In what way is
the illness connected to what has happened in my life before? Has my way of
leading my life anything to do with the genesis of my illness? Trying to
answer such morally loaded questions indicates the contestedness of chronic
fatigue and thus gives a hint about the contours of contestation.
By the way the interviewees temporalize illness in their narratives,
they seem to deal with the responsibility of illness in what is analyzed as
time shadows (Bülow & Hydén, 2003a). Temporalizing illness and giving it
the shape of a shadow of time means that illness is told about as something
which was unavoidable but that should, or might, have been foreseen (backshadowing), something which was unavoidable but which was impossible to
9
foresee because it was a consequence of many different and unconnected
things in life (vortex time for which one could not be held as responsible) or
something which was just one possible outcome of a range of possibilities
(sideshadowing) (cf. Morson, 1994). The use of different time shadows
seems to have consequences for the question of responsibility and thus
implications for the further narrative reconstruction of illness.
Telling a story that gives the storyteller some kind of responsibility
for becoming ill seems to imply that the storyteller narratively manages this
in his or her story. When I ask Jean, a woman in her forties, about how she
thinks about what happened, she makes a statement that has consequences
for such things as responsibility for illness.
Pia:
(…)
Jean:
Pia:
Jean:
Pia:
How do you think then what was it that happened? How do you explain
that to yourself?
I believe that I have been under too much stress for a much too long time
And then there during a couple of months it became acute.
And that- (.) I don’t think it’s a coincidence that I became ill.
That it isn’t a coincidence?
No, no I’ve for sure been setting this up very carefully…
Can you tell me?
Jean starts to tell a very long story about the genesis of her illness
starting nine years back in time when her youngest child was born. It is a
story told in a chronological way about studies at night while the family was
at sleep, about a psychosocially dreadful working environment she at first
had to return to, about getting a new job and having to make a social
“restart,” about moving out and moving back due to renovation, and–at the
end–about leaving an area where she had lived most of her life and instead
moving to a new house in a new town and getting another new job and a
range of difficulties due to these major changes. She concludes her story by
reflecting on what all this meant and on her sense of responsibility.
Jean:
So that it has been change upon change upon change upon change
And it has been me who’s been fixing and dragging on and nagging
Just this we’re talking landlords, making contacts with real estate agents
and (..)
So of course, of course at that time I’ve been thinking that one can’t go on
like this. That it doesn’t work but just then I was in the middle of it.
/…/
But of course I’ve been thinking about that many times at which point
could one have put a break on the course so this wouldn’t have happened?
But (.) at the same time “so what” then this happened.
And to some people it’s probably unusually difficult to learn to draw
reasonable lines then.
And I was probably one of them.
10
But I suppose I’ll have to try to learn from that then. Even if INow it’s like this I’ll have to try to make something constructive out of it.
I guess I’ll have to try to live at a sort of slower pace.
In the beginning of her story, Jean stresses her own responsibility for
becoming illillness is not a coincidence and she has probably “been setting
this up very carefully.” In her conclusion, though, she emphasizes how
various changes have piled up. This is noticeable from the different parts in
the long story about many different events that were putting stress on her
during these years and from her repetition of the words “change upon change
upon….” At the same time as most of these changes seem to have been
impossible for Jean to control, or to put a stop to, her responsibility for
managing these changes is pointed out: “it has been me….” This makes her
free from liability and at the same time she shows great responsibility. She
describes how she thought about how to stop this course of events but
declares that what happened did happen.
The way she elaborates with time is interesting, moving from “at that
time” to “just then” as well as to times when she, hypothetically, could have
prevented the whole thing. The whole line of argument about stopping the
process, about accepting her to be a kind of person who has difficulties
drawing reasonable lines for herself, leads to the conclusion that she has to
learn something from all this. This image of a responsible person willing to
learn from her experiences probably strengthens Jean’s moral status (cf.
Charmaz, 1999).
Summing up
These three main parts of the illness story: the long-way story, often
preceded by the person’s own uncertainty, the experience of the confirmation
or rejection of diagnosis and finally the need for dealing with the genesis of
illness show something about the contested illness. The kind of legitimizing
effect of diagnosis, despite being problematic in many contexts, is apparent.
One possible interpretation is that the diagnosis after all marks that the illness at least in a certain medical context has been confirmed. The long-waystory and the legitimizing feature of diagnosis resemble Linda Garro’s
(1994) analysis of illness narratives about TMJ as well as studies about contested illnesses like for instance CFS (Woodward, Broom, & Legge, 1995)
and RSI (Reid et al., 1991). Though, unlike in for instance Garro’s analysis,
the narratives in this study do not include the dimension of biographical
disruption, which often is described as an important part in illness narratives.
This could partly be explained by the long time of searching, which is the
overriding figure in most of these narratives, and of diagnosis as a relief. The
insidious onset of illness and the fact that most of the interviewees locate the
11
illness many years back in time are other possible explanations for why these
narratives do not include a disruption. However, it is obvious that the interviewees are involved in a narrative reconstruction while reasoning about, for
instance, the genesis of illness. Dealing with such questions usually means
stories about the self as I will show more of in the next part of the analysis.
Stories about self in narratives about chronic fatigue
Stories are about things that happen. Usually something that someone
does or says or thinks and what happens next. Every single story is in this
way constructed to have a plot. Through the plot, different parts of a story
are linked together thus forming a coherent whole. Similarly, a whole
interview, or a series of interviews with the same person, consisting of a
range of different stories, from an analytical point of view, could be analyzed
as a narrative about, for instance, illness.
Stories are also one way to tell another person something. So, telling
stories is based on that there are both a speaker and at least one listener.
Stories make it possible to move both sides concerned in time as well as in
space (cf. Young, 1987). In for instance retold stories about meetings with
doctors, at the social insurance office, or conversations with friends and the
family, parts of the dialogue might be performed so that the storyteller not
only presents him or her but also other people and the teller’s relation to
these. No matter what form a narrative has, if it is performed in a dramatic
scene or just “told,” it tells something about the way the teller sees the world
and about the teller as a person. In that way, every story also has a
storylinea vein of meaning which is underlying the plot and by which the
listener can understand the story as a certain kind of story, such as the story
of the winner. According to Schafer (1992), storylines consist of every kind
of directions as how to “read” the storylike metaphors, similes and dramatic
scenes, or a combination of these. Different stories about different events
told in various ways can thus bring forth the very same storyline and tell the
same kind of story through, for example, a whole interview.
The interviews about chronic fatigue consist of lots of stories of
various lengths told either in a series to make up the chronological story of
illness or as a kind of digression to illustrate or emphasize something. Many
of these stories as well as the interviews on the whole seem to play an
important role in the identity work of the interviewees.
Presentation of self
Even if every story concerning the teller is possible to think of as a
presentation of self, interviewees sometimes give accounts of his or her
12
sense of self in a very clear and open way. This is interesting since it might
have something to do with chronic fatigue being a contested illness, which,
as far as the interviewee knows, might be contested in the interview situation
as well. So, like when I met Jill for the first interview and started it by asking
her about how it came that she attended the patient school, she chose to start
her story by pointing at the importance of knowing who the person becoming
ill “really is”–or was.
Jill:
I believe that one has to start from the person one really is.
Cause when you has CFS then you aren’t really yourself.
This is what I believe and from that eh things will happen.
Then one becomes ill.
And for me it took many years before I came to the patient school.
The first part of the account is more or less a general statement about
illness and self. Though, at the end Jill turns to her own story of illness–for
her it took many years to come to the patient school. I ask her how many
years it took and as an answer she summarizes her long-way-story as shown
earlier on page 6. However, since that seems to me to be a potted version, I
ask her “Can you tell me something about that?” And she says, once more
claiming that she has to start from the beginning:
Jill:
mm I can do that have to- but then I have to start from the beginning.
Then I start like this.
I use one minute to tell who I really am
“Certainly,” I answer, “you can use more than one minute if you
want” and we laugh together and she begins a very long story about illness
by presenting herself as a dandelion flower.2
Jill:
I’m really that kind of dandelion flower as they say that shouldn’t have
survived in this life
but who did anyway because I’m terribly stubborn
ehum (.) I have quite great inner strength so to speak (Pia: yes)
and eh have lived a rather hard life really like that
really I have done becausebut I’m stubborn and make up my mind about something
and do that too. And carry out what I really want to do.
So- so- that’s me.
Jill’s story about illness is framed in at least two different ways: first
by stating that CFS changes something about the self, and secondly, by
categorizing herself as a flower of weed, that is as a kind person who will
survive even if the environment is very tough. Her claim, at the beginning, of
being a certain kind of person who always does what she decides to do, is
13
just the prelude for the storyline of the fighter and the survivor, something
which is repeated throughout the interviews. Emphasizing that she has to
start from the very beginning and by starting her story far back in her past
gives her account a temporal depth and thus a strong form of causality
(Linde, 1993).
In Jill’s case, her presentation of self was something that seemed to
be important already from the very beginning of the interview. To tell me
about the chronic fatigue was probably to take the risk of being contested.
By starting her story with this kind of presentation of self, she introduced a
certain way to interpret the whole story she was going to tell.
However, a presentation of self sometimes seems to be evoked by
what happens in the interview, like when a question from me seemed to
cause Joseph to present himself as a kind person “who finds it difficult to
stay home from work.”
Pia:
Have you been able to work during this time?
Joseph: At first I di- you know I was this kind of person who eh ehum who always
was working and who never stayed home from work.
eh so that it- I think I’d had- at my current workplace I’d worked about
five years then and had only three days of sicklea- of absence *heh*
during those f- eh during those five years.
And ehum e:hum I went on like that.
I went to work the day after that (Pia: mhm)
because then it had like cooled down
And I suppose I didn’t feel well but I- I went back again.
Pia:
After that heart- [coronary history
]
Joseph:
[yes exactly- that’s right]
And eh and I- I fel- I was like that t h e n that I found it very hard to stay
home from work.
At the time for the interview, Joseph has not worked for about 18
months but his story of illness is much longer. My question about work
during his time of illness seems to be morally loaded and meant to force
Joseph to give an account. It seems as if he starts to answer the question but
then interrupts what he is going to say to make a claim about identity. His
statement about what kind of person he was is emphasized by the history he
brings up about his former degree of absence due to illness as well as his resistance towards illness, going back to work “the day after” even if he did
not feel well. To claim to be a certain kind of person, Joseph makes use of
his history and a kind of “former self.”
Proving illness
All of the interviewees talk about their illness as contested in some
way and in some contexts. But not all of them tell stories about being
14
contested. Instead, many give more general descriptions about being doubted
and for instance having the feeling that a doctor or a relative did not really
believe in their illness. Stories about specific occasions of being contested
are quite often told as dramatic scenes on which different persons appear.
Joyce, a woman in her sixties, has been ill for many years and tells several
stories about being contested in different situations.
Joyce: But she (the daughter-in-law) thinks that one should be allowed to call
here then at seven in the morning or at eleven at night and say can you
take care of them (the grandchildren)?
But I said that’s impossible.
Why not then? (in the “voice” of her daughter-in-law)
No but I can’t manage
I can’t on this short notice
And now she’s become so mad at me so she won’t see me any more.
And I think that is something absolutely terrible
I can- then I get furious
and think that how can one be- how can one be like that? How can one get
angry with a person who is ill?
I don’t think I’ve done anything. (Pia: No)
(.)
I don’t think so but she thinks that it is awful to ha- that I can’t like babysit and so. (Pia: mhm)
But that- I would of course do (that) if I could.
Then- I used to the first years when the kids when their kids were younger
when I like- before I became this ill. (Pia: mhm)
So that such things are very hard you know to be able to handle then.
I really don’t know what I should do to make her understand thatyes she thinks I’m a witch of course who doesn’t help them with the kids
yes but everybody has his own job
and they have a tough situation and everything I understand that too of
course
but if I can’t manage so I can’t
It’s not that I want to be mean
So such things are- I think it is- it is well sad when it goes like this.
The story about refusing her daughter-in-law’s wish when calling
Joyce to ask for help with the children the very same or the next day is about
the consequence of contested illness. The mistrust is something that has affected the relationship between the two women. They now never see each
other and Joyce feels sorry about that. The narrative is a mix between a story
about a specific occasion and a habitual narrative (Riessman, 1993), and the
dramatic scene Joyce performs lends it a sense of presence. As a listener I
could almost hear the daughter-in-law. The story, told as an illustration to
what the illness has meant for Joyce, shows the difficulty to get other persons to understand fatigue as a legitimate reason for, in this case, refusing to
15
act as a baby-sitter for the grandchildren. In this way, it is a story about being
contested. But the story also shows the need for giving accounts in the interview situation as well, for not fulfilling the cultural expectations of a
grandmother. In her story, Joyce emphasizes that she did baby-sit earlier
when she was not in as bad a shape as she is now. Pointing out that she
understands why her daughter-in-law thinks that she, Joyce, “is a witch” but
that her refusal is not because she is unkindshe just “cannot manage.” This
act of balancing nuances the story. The analysis shows that stories about
being contested in two different ways brings forth the contours of
contestation by illustrating what it means to suffer from something that
always is at risk of being contestedthere and then as well as here and now.
From the stories about being contested it is clear that one big problem, for those suffering from a contested illness, is to explain the degree of
tiredness in such a way so that illness is not thought of as moaning, hypochondria or as imagined. In the interviews, there are a lot of stories to prove
illness and to illustrate how bad it is or has been. This could concern tiredness, a bad memory, pain or a combination of these symptoms. Jill, one of
the interviewees, calls the most difficult years during her illness “the hard
years” and describes them in a story about unpaid taxes due to fatigue and
not having the strength to figure out how much she is supposed to pay.
Jill:
I couldn’t even manage to call the social insurance office to say d e d u c t
m o r e t a x on my sickness benefit (Pia: ˚no˚)
Cause then she had asked “how much should we deduct?”
And that I couldn’t manage to work out. (Pia: ˚no˚)
/…/
So, of course I got lots of unpaid taxes for the years ninety-six, ninetyseven and ninety-eight cause I couldn’t manage to take care of this.
And even if I knew that it would come like that, I couldn’t manage to sit
down and work out how much they should deduct cause then I’d had to
look at my tax forms (the declaration papers)
and everything just whirled like this.
And I’m fairly used to before then to make budgets and calculate and
income tax returns. I’ve done that for companies.
But I couldn’t even work out this little thing how much tax I should pay
Do you understand? I couldn’t manage. So, so tired I was t h e n.
The story shows how fatigue has to be put in context to become
comprehensible. It is interesting the way Jill uses different images of herself
to construct the image of her illness. Comparing how she functioned during
“the bad years” with the person she was before, “used to” this kind of things,
Jill illustrates how her tiredness affected her everyday life. As a mantra she
repeats the words “I couldn’t manage.” The story is about a time a couple of
years before the interview and the difficulty to explain an illness like chronic
fatigue becomes very clear when Jill at the end of her story asks “do you
16
understand?” By doing this, Jill moves out from her story and uses the frame
of the interview to make sure that her story has been heard. Just as in the
interview with Joyce, the here and now and the risk of not being trusted is
brought forth in the interview situation.
Maintaining moral status
So far, the contours of contestation concern the genesis of illness and
the difficulty to prove illnessduring the pilgrimage as well as later in everyday life and in the interview. However, contours of contestation are also noticeable in stories about how to handle illness and thus how to maintain one’s
moral status (Charmaz, 1999). One way to do this is to demonstrate agency.
That is, to show one’s own moral strength in relation to illness by, for instance, being the one who pushes the medical investigation forward and who
has the power of initiative. In the following story, Jessica, a woman in her
mid-thirties, tells me that she is the one who after some time takes the
initiative, showing a strong drive.
Jessica: And eh I guess I went to a doctor at the medical department here in Home
Town
But I guess they couldn’t really say.
They thought that it had something to do with my operation at first.
But you know time went on and I wondered why- you know I never got
well.
And tired.
Tremendously tired too. Well that is the most important thing that I hardly
managed to get out of bed.
And then I think I got tired myself of the doctors not getting any result
right. (Pia: mhm)
So my first experience was that I read in the newspaper that it said that
Professor Y was going to lecture on fibromyalgia (Pia: oh so)
And then I thought well I will sleep today then I’ll have enough energy to
go to that lecture in the evening.
And I made it there anyway. Really tired and exhausted.
And when he went through all this he just got to chronic fatigue syndrome
then I realised that aha this is really this is what I have.
It turned into an eye-opener for me.
In the story, Jessica experiences a turning point in her illness when
she due to her own efforts attends a lecture about contested illnesses. Three
things seem to be important to function as a story that sustains the moral
status of the teller. These are the descriptions of the failure of doctors to
come up with an answer, the picture of how very tired Jessica was and,
finally, how she resisted the fatigue and actually went to the lecture. In the
context of the interview narrative about her illness, this narrated episode as
17
an important starting point which seemed to give her power to keep on
struggling for a diagnosis.
Pia:
What happened then?
Jessica: After that I called my doctor at Home Town and asked for an appointment
with her.
And then I said that n o w I’ve done some “mind-mapping” of my whole
l i f e from birth up to now about how my health has been
/…/
And she was- got really shocked when she saw how much I had had
through the years.
So she said I don’t understand how you’ve put up with this kind of life she
said
No neither do I (Pia: no)
That- that is of course a sign that I’m done in I right (Pia: hm)
So I want to go to this X who is a specialist since you can- nothing else
than- you only want to give me Cipramil. (Pia: mhm)
Nothing wrong with that but I thought that this is something more so you
have to get a diagnosis on it.
Pia:
mhm and what did she say?
Jessica: She said that she thought that my life was well very- yes I’d had a lot of
health problems
and that I don’t really know this myself she said. I’m a doctor of medicine.
(Pia: mhm)
of course when I [the doctor] see this and see how you feel today and
know how you’ve been working and all and can put things together
Then well she realised that you must go to someone who has knowledge
about those connections then so we send you right away she said I really
do think so
And she thought that it was very good that I had come to a conclusion
about that myself then.
The dramatic scene Jessica performs strengthens her moral status in
various ways: by showing agency, as described before, but also by
describing her doctor’s response and reactions. After Jessica had shown the
mind-map of her life, the doctor was “really shocked.” And in the retold
dialogue between her and her doctor, the words from her doctor seem to
validate her illness “she said I don’t understand how you’ve put up with this
kind of life.” However, the response from the doctor also validates Jessica’s
own analysis, which is a problem for many persons suffering from contested
illness. The doctor’s evaluation and decision for referring Jessica to a
specialist shows this clearly: “when I see this… and see how you feel today
… how you’ve been working… and can put things together.” The energy
Jessica shows by sketching the mind-map, as well as the request for a
referral letter to a particular specialist, form a contrast to the tiredness she
18
emphasized earlier. However, due to the doctor’s words, this does not seem
to diminish the image of being ill but further strengthen her moral status.
However, not only agency can help an ill person maintain his/her
moral status. Through stories about resisting illness in different ways,
interviewees claim to be a kind of people who do not give in to illnesslike
Joseph, who (p. 13) talked about going back to work the day after an acute
illness. And even when one’s own strength is low or when one feels less sure
about one’s feelings, words from others can both comfort and legitimate
illness. Such words could be a doctor’s words but also words from others.
Ruth, a woman in her late fifties, is one of those who frequently make use of
the words from other people to legitimize her illness, an illness which she
sometimes doubts.
Judith: and sometimes I wonder then if- if just that if I’m only imagining my
illness
And then I say to C (her husband) do you think that I’m just lazy?
No, he says that youCause he can see on me that I have absolutely no energy then.
And then maybe I understand that it’s something *else* (gives a laugh)
To bring up the possibility that her illness might be imagined could
mean a risk, but it might also be the opposite. Showing openness to this
possibility and then how other people–like her husband, her doctor and her
contact person at the social insurance office–try to convince her that she
really is ill seems to function as one kind of legitimizing act and lends her a
higher degree of moral status due to other persons’ words.
Summing up
To present oneself as a certain kind of person was obviously of great
importance for the interviewees and part of their identity work when dealing
with illness. As the examples have shown, the interviewees used many
different kinds of stories and various strategies to perform a sense of self.
These stories could be about the “true self,” the person one “would be” if one
was not ill, or it could be the kind of person one “is” now due to illnessand
what one has become in relation to other people. No matter what form these
stories appeared in, they all seem to have something to do with suffering
from a contested illness. To introduce oneself as a certain kind of person, by
one’s own acts, by others’ words about oneself conveyed through dramatic
scenes, or by proving illness in some way, seems to help the individual
storyteller to resist attacks on the self such as mistrust and doubtfulness due
to illness. As a further step, this kind of stories can be used to sustain the
moral status of the narrator. In this way these stories about the self, although
19
different, work as a means to defend a person’s self as well as to prevent the
risk of being contested.
Conclusion: The contours of contestation
The point I intend to make from the analysis is that contours of
contestation become discernable in the narratives about chronic fatigue. That
is, the contestedness that is brought forth in the interviews in different, more
or less obvious ways. Such contours of contestation are explicitly part of the
well-defined stories about experiences of being doubted by doctors, close
friends or relatives. However, the signs of contestation are also found in the
way the interviewees present themselves, in the interview situation, as a
certain kind of person to sustain their moral status. Nevertheless, part of
what seems to be characteristic in illness narratives about a contested illness
like chronic fatiguelike the uncertain onset and the pilgrimage of
sufferingresembles the stories about many other chronic illnesses. Still,
there seems to be differences. One such important difference is probably
connected to the problem of the legitimizing of the illness. Since CFS is
insufficiently medically explained and only accepted as a real illness by
(probably) a minor part of the medical society, the diagnosis might provide a
legitimate reason for the suffering in certain contexts but stay as a contested
and doubtful illness in other situations. As a consequence, illness narratives
about chronic fatigue always include the risk of becoming mistrusteda risk
that those suffering from such an illnesses have to deal with in all kinds of
meetings with other people. At the same time, the only way to have one’s
illness confirmed is by describing it. This leaves the sufferer in a
communicative dilemma which perhaps is the reason for telling one’s story
of illness in a particular way, manifesting the contours of contestation.
Finally, my analysis concerns illness narratives about chronic fatigue.
However, there are several other kinds of illnesses which in many ways are
comparable to chronic fatigue, being contested in a similar way and because
of similar reasons. A plausible assumption is that stories about other kinds of
contested illnesses in important ways resemble those about chronic fatigue.
This is, however, something that should be investigated since narratives and
storytelling are important sources when finding out about experiences of
illness and people’s sense of the self in relation to illness.
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1
The concept biographical disruption has, however, not been unchallenged
and is recently partly revised according to (late)modernism (S. J. Williams,
2000). Williams criticizes the unreflected use of the concept without
anchoring it in scrupulous analysis of empirical data. He argues in favour of
a more nuanced use since this kind of experience cannot be prejudged as part
of every chronic illness, “timing and context, norms and expectations,
alongside our commitment to event, anticipated or otherwise, are crucial to
the experience of our lives, healthy or sick, and the meanings with which we
endow it” (ibid, pp. 51-52).
In Swedish there is a phrase called “maskrosbarn,” which literally means
“dandelion child” and is used to describe someone who has had a dreadful
childhood but nevertheless has survived as a person. The woman called Jill
2
23
uses the expression “maskrosblomma,” meaning dandelion flower. It is
impossible to know if she actually meant the well-known phrase and just
picked the wrong word, which happens time after time in the interviews with
her, or if she made up a phrase of her own. In either case, the interpretation
made in the analysis is based on dandelion as a weed.