Sociology of Health & Illness Vol. 23 No. 3 2001 ISSN 0141±9889, pp.

263±285

Illness narratives: fact or fiction?

Mike Bury
Royal Holloway, University of London

Abstract There is currently considerable renewed interest in narrative

analysis in the humanities, social sciences and medicine. Illness
narratives, particularly those of patients or lay people, are a
particular focus in health related settings. This paper discusses
the background to this interest, especially its roots in critiques of
medical dominance and distinctions between disease and illness,
drawn by sociologists and anthropologists in the 1970s. The
current emphasis on patient or personal narratives can also be
seen to stem from changes in morbidity patterns, the expansion
of information about disease and illness, and in public debates
about the effectiveness of medicine. The paper then goes on to
outline a framework for analysing illness narratives. This
involves exploring three types of narrative form: `contingent
narratives' which address beliefs about the origins of disease, the
proximate causes of an illness episode, and the immediate effects
of illness on everyday life; `moral narratives' that provide
accounts of (and help to constitute) changes between the person,
the illness and social identity, and which help to (re) establish the
moral status of the individual or help maintain social distance;
and `core narratives' that reveal connections between the lay
person's experiences and deeper cultural levels of meaning
attached to suffering and illness. Here, distinctions are drawn
between such sub forms as heroic, tragic, ironic and comic, and
regressive/progressive narratives. Finally, the paper discusses
some of the methodological issues raised by narrative analysis.
Given the complex character of illness narratives, their social and
psychological functions, together with the motivational issues to
which they relate, it is suggested that they constitute a major
challenge for sociological analysis. From this viewpoint current
claims about narrative analysis in medicine need to be treated
with caution.

Keywords: Illness, narratives, contingent, moral and core narratives,

narrative analysis

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264 Mike Bury

Introduction

The telling of stories, whether about oneself or others, is universal. The

development of language in human life, in both evolutionary and individual
terms, leads to the elaborate use of metaphors and other figures of speech,
and thus narrative form. All human cultures (or cultural segments) rely on
such symbolic repertoires in order to achieve a minimum of social in-
tegration. In such contexts narratives convey and constitute an `infinite
reservoir of meanings and comprehension', though these are necessarily
constrained by linguistic rules and social conventions (Gellner 1992: 124).
Not only do language and narrative help sustain and create the fabric of
everyday life, they feature prominently in the repair and restoring of mean-
ings when they are threatened. Under conditions of adversity, individuals
often feel a pressing need to re-examine and re-fashion their personal
narratives in an attempt to maintain a sense of identity.
Thus, universal, cultural and individual levels of human existence are tied
together with narrative threads. As Johnson has argued, `Not only are we
born into complex communal narratives, we also experience, understand
and order our lives as stories that we are living out. Whatever human
rationality consists in, it is certainly tied up with narrative structure and the
quest for narrative unity' (Johnson 1987: 171±172). As Charles Taylor puts
it, `we understand ourselves inescapably in narrative' (1989: 51).
In recent times, the study of narratives has received considerable atten-
tion, in both the social and human sciences (especially in sociology and
anthropology connected with medical matters) and in the field of literary
criticism. Books such as Ricoeur's Time and Narrative (1984) have acted as
wide-ranging philosophical sources for both. Though Ricoeur is essentially
concerned with textual narratives his watchwords may be applied to `story
telling' in other contexts: `The world unfolded by every narrative work is
always a temporal world' (Ricoeur 1984: 3). This paper explores the im-
portance (and, to some extent, the limitations) of studying narratives in
circumstances where the `unfolding' of illness, particularly chronic illness
comes to dominate people's experience of everyday life. Here, time is
important in a mundane as well as an existential sense, for, as the paper will
argue, such illness constitutes a major instance of `biographical disruption'
(Bury 1982, 1991) in which the relations between body, mind and everyday
life are threatened.
The study of `illness narratives' constitutes a dual process, in examining
these dynamics. On the one hand the exploration of chronic illness nar-
ratives may throw light on the nature of disrupted experience, its meanings
and actions taken to deal with it. On the other hand, the study of such
narratives has the potential to reveal a wider set of important issues to do
with the links between identity, experience and `late modern' cultures.
Whilst this paper largely concentrates on chronic illness narratives from the
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 Illness narratives: fact or fiction? 265

viewpoint of lay thought and `patienthood', connections between personal

and bio-medical narratives of chronic illness under conditions of modernity
will also be made at various points.
The paper explores these themes in three stages. First, the rise in import-
ance of illness narratives in modern societies is sketched in as a necessary
historical background and context for the discussion that follows. Here the
limits (as well as socially meaningful character) of bio-medical narratives
of illness will become readily apparent. The current emphasis on `personal
narratives' and `lay beliefs' or `lay knowledge' in social research is thus
immediately seen as part of a general feature of late modern cultures,
involving the loosening of the authority of the `grand narratives' of science
and medicine in the ordering of everyday experience, and especially in re-
sponses to illness (Hyden 1997: 49) As will be seen, this is especially relevant
in an era dominated by chronic illness.
Second, the paper offers a framework for studying chronic illness narratives.
This involves the exploration of three types or levels of narrative formation in
the face of illness: `contingent narratives' which involve explanations of illness
onset that deal with its `proximate' causes and the practical and disabling
effects of symptoms; `moral narratives' that provide accounts of the changing
relationship between the person, the illness and social identity; and `core
narratives' that reveal the connections between the lay person's experience and
deeper cultural levels of meaning attached to illness and suffering. In the third
and final part of the paper some tentative reflections on the methodological
issues and limitations of narrative analysis in chronic illness are proffered.

The rise of chronic illness and the crisis of bio-medical narratives

Writings in the history of medicine make clear the importance of illness

narratives, particularly with the rise of the doctor-patient relationship in
early modern times. Before the advent of the `bio-medical model' of illness
in the understanding of disease, during the mid and late 19th century, the
ability of the doctor fully to take a history from the patient was paramount.
This involved information about the patient's lifestyle, his (or her) moral
stance and the wider environment in which the patient lived. Eschewing all
but the most rudimentary physical examination of the patient, the aristo-
cratic doctor (or, rather, the `elite' doctor treating patients from the upper
classes) in the 17th and 18th century was expected to attend to patients'
narratives and develop treatment regimens accordingly, usually through
procedures that restored the body's equilibrium (Lawrence 1994: 12). The
fact that such procedures, included bleeding, purging and cupping, were
unlikely to bring about any efficacious result (at least from a modern
perspective, though they may have `worked' in other ways) only reinforced
the need for the doctor to concentrate on attending to the patient's story.
As Porter has recently put it:
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266 Mike Bury

In the absence of decisive anatomical or physiological expertise, and

without a powerful arsenal of cures and surgical skills, the ability to
diagnose and make prognoses was highly valued, and an intimate
physician-patient relationship was fostered (1997: 9±10).

With the rise of scientific bio-medicine, linked with the development of the
modern hospital and the laboratory, the importance of the patient's experi-
ence, and thus his or her narrative can be seen to have diminished (Jewson
1976). As the study and treatment of disease became separated from the
individual, and located within body systems only understood by experts, the
need to attend to the patient was reduced to eliciting information about
the objective signs and symptoms of the disease. The task of the doctor,
increasingly in the 19th century and into the 20th, was to translate these pieces
of information into a definitive diagnosis that linked the disease to specific
biological causes and outcomes, rather than to the patient's circumstances or
lifestyle, let alone to their beliefs or values. Whereas 18th century medicine had
been concerned with the `natural', and with disease as a deviation from the
individual patient's `natural state', the 19th century became preoccupied with
the `normal', and with disease as a deviation from statistical norms, inde-
pendent of particular experiences or circumstances (Lawrence 1994: 45). These
new scientific approaches to disease and illness were also associated with
social and sometimes political reform, and an attack on what was regarded
as `professional elitism' as well as `conservative science' (Lawrence 1994: 36).
Many of the sociological accounts of the progressive separation of the
medical model of disease from the lay experience of illness, and the growing
power of the medical profession in the 20th century to define what is and
what is not illness, have emphasised, however, the negative effects of the
putative gulf between lay and professional worlds (e.g. Eisenberg 1977,
Freidson 1970). Indeed Lawrence himself notes that in Europe and North
America by 1920, the idea of disease as individual pathology had become the
dominant paradigm, and was inextricably linked to the development of a
`bounded' medical profession, that exerted almost complete jurisdiction
over illness and its treatment (1994: 77). The acceleration of this process
with the enormous expansion of medical and surgical treatments and pro-
cedures from the 1940s onwards only seemed to reinforce the tendency to
render the patient passive; subjective accounts of the patient were virtually
irrelevant. As illness was increasingly sequestrated from everyday life by
professional medicine, so the patient's suffering was effectively silenced,
especially under the impact of `the technology-assisted physical and chemical
probes of our century' (Risse 1999: 9). This process may also have been seen
as part of a more general separation and `lifting out' of key aspects of
everyday life into the professional sphere under conditions of modernity
(Featherstone 1992, Giddens 1991).
However, though many analyses have emphasised the overshadowing of
the patient's view by bio-medicine, various factors have acted to bring lay
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 Illness narratives: fact or fiction? 267

narratives back into focus in recent years. Two processes are of particular
note. First, and most obvious, is the relative decline in the importance of the
infections on which the bio-medical model was founded, and the growing
impact of degenerative and chronic illnesses (Strauss 1975; Bury 1991, 1997).
As everyday experience and medical practice has increasingly had to grapple
with the effects of an ageing population, and the related predominance of
chronic physical and psychosomatic illness, so management and care have
superseded treatment and cure (Gerhardt 1989: 139).
Here, in chronic illness, the contingencies of everyday life reassert them-
selves, and the subjective patient view becomes audible once more (Bury
1998: 13). In order for the everyday management of chronic illnesses to
proceed, their heterogeneous character (in terms of the multifarious ways
disabling symptoms interact with the `life worlds' of the home and the work
place) become the focus of both lay and professional concerns. Assessment
of quality of life, the impact of illness on carers and a renegotiation of the
role of professional care all appear on the professional agenda. The conse-
quent loosening of the bio-medical grip (with its `grand narrative' conno-
tations), provides the space for lay narratives to flourish.
Second, as high tech bio-medical care becomes ever more expensive to
provide, and open to increasing questioning and evaluation, the hospital
sector in health care systems gives way to a renewed emphasis on primary
care. Debates within primary care and general practice about the value of
`holistic medicine' and of listening to the patient, which began in Britain in
the 1950s by individuals such as Balint (1955) and pursued in recent years by
others such as Pietroni (1988) (see Watts 1992 for a review) also provide an
opportunity for patient narratives to be given space and attention. Most
recently, illness narratives, and the links with `history taking' in medicine,
have themselves been associated with moves to improve care (and further
develop an ideological underpinning for general practice) that do not rely
entirely on what may be regarded as a narrow view of scientific medicine or
its `evidence based' practice and evaluation (Jones Elwyn 1997, Greenhalgh
and Hurwitz 1999).
As Kleinman (1988) has pointed out, in the face of chronic illness
especially, the physician may best act as a witness to suffering and as a
sources of practical advice and guidance, based on the `sensitive solicitation
of the patient's and the family's stories of the illness' (1988: 10). Though
renewed attention to patients' narratives implied in this view holds out the
possibility of physicians (and other practitioners) redefining their roles away
from a preoccupation with a reductionist bio-medical model of illness, the
ambiguities of a professional expansion into `patient based' and `holistic'
health care has not been lost on some sociological writers (Armstrong 1986).
The contradictions of current medical attention to patient narratives will be
returned to later in this paper.
Two other sources of change in medical practice and the experience of
illness need to be noted, before the discussion proceeds. The first of these is
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a recent and powerful `democratic' impulse, leading to a reduction in hier-

archical relationships in late modern cultures, including those in the medical
sphere. As Porter, again, has pointed out, recent developments in health
care, including debates about the effectiveness of the medical response to
diseases such as AIDS (and we might add, in the British context, at least,
a series of crises in the fields of mental health and surgery) have `opened a
chink into which users and lay people could insert themselves as new carriers
of credit' (Porter 1997: 708). Health care, as a result has become `more
democratic, accessible and user friendly. Thus the 20th century closes with
the ownership of the body and the right to speak on sickness profoundly
contested' (1997: 708). Patients' illness narratives, once almost silenced by a
paternalistic if not overtly authoritarian medicine, suddenly find a new voice.
In addition, the enormous expansion of information about illness, especially
chronic illness, available to patients, via media coverage, the internet and
alternative forms of health care is transforming the medical landscape.
Where once the bio-medical paradigm held sway (and where doctors jealously
guarded its secrets), now lay people have access to an increasing range of
information and ideas about the origins, course and outcomes of illness and
its treatment. This, too, fuels the reduction of medical authority as the
fountain of all official knowledge about illness, and expands the range of
culturally available narratives that can be articulated. Though these,
admittedly, are often drawn from alternative professionally-crafted knowl-
edge, for example, via self-help groups focusing on specific chronic
disorders, or `mediated ideas' taken from multifarious public discourses,
their scope provides lay people with a much greater opportunity to fashion
personal narratives that connect the private sphere with public forms of
knowledge. As Giddens has noted, the weakening of sources of an `over-
arching authority' such as that of medicine means that lay people may
`re-skill', developing responses that offset earlier `sequestrating' tendencies
(Giddens 1991: 140). Under all of these conditions it is not surprising to see
illness narratives gaining greater attention once again.

Form and content in chronic illness narratives

As stated in the introduction to this paper, a framework for analysing illness

narratives suggests three broad forms that need to be considered: contingent
narratives; moral narratives; and core narratives.

Contingent narratives
Under this heading, the analysis of illness narratives is concerned with those
aspects of the patient's `story' or `account' that deal with beliefs and
knowledge about factors that influence the onset of disorder, its emerging
symptoms, and its immediate or `proximate' effects on the body, self and
others. Although writers such as Good warn against the `transformation' of
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 Illness narratives: fact or fiction? 269

narratives and stories into `beliefs' and `explanations' of illness (with their
`analytic assumptions associated with progressive science' Good 1994: 163)
lay people's responses to illness frequently draw upon and, in turn, con-
stitute culturally available concepts of disease and illness that powerfully
influence the fashioning of narratives.
Bearing in mind the introductory remarks in the previous section, con-
cepts of disease and illness in modern society may be divided, at the risk
of gross over-simplification, into two broad types which can deal with their
`contingent' character. On the one hand there is a categorical view of illness
based on the separation of the normal and the pathological, where objective
signs and symptoms are differentiated from known or putative normal
states, and where the onset and course of the disease is relatively clear cut.
On the other hand, there is a spectral view in which the difference between
disease and illness is a matter of degree and a function of social process; the
occurrence of illness, especially chronic illness, is here essentially emergent in
character, depending strongly on social circumstance and societal reaction.
Though the first, (categorical) view may be characteristic of a bio-medical
approach, and the second (spectral) of a more social or personal perspective,
a great deal of overlap can be observed in their usage, especially in personal
narratives. Moreover, chronicity tends, almost inevitably, to bring with it
a range of `relational' issues, as the illness interacts with everyday con-
tingencies.
For example, in work on chronic arthritis (Bury 1982, 1988) it was found
that respondents' stories moved back and forth between lay concerns and
perceptions, and a growing familiarity with medically-based ideas. Indeed,
at times it was difficult to identify where `lay' and `expert' modes of thought
began and ended. This was particularly evident when the question of
causation was discussed. Patients would frequently discuss the onset of the
condition with respect to the possible effects of events occurring at the time
of the onset, yet leave themselves open to more strictly medical explanations
as well. One respondent recalled a series of difficulties with her seven-year-
old son prior to the onset of the illness, culminating in the son collapsing at
the school, where, coincidentally, she worked as a dinner lady. She recalled:

I went to the cloakroom and found him in a terrible state. Nobody

seemed to be doing anything so I carried him home myself. I'm not very
big and it nearly killed me. In the end the ambulance came and rushed
him off to hospital. Appendicitis. He had an emergency operation and
was on a drip for two days. He recovered but it was a shock. I often put
my trouble down to that time. I'm not saying it caused it only that's when
things started happening (Bury 1982: 174).

The story of this woman's illness contained a number of elements which

touched not only on the question of onset and possible causation ± an
approach which, as indicated in the above quotation, has the hint of a `life
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270 Mike Bury

event' approach to illness occurrence ± but also on her social situation into
which her illness brought yet another element of hardship. Throughout the
account of her own illness, and that of others such as her son's, she drew on
ideas and forms of `lay knowledge' that were often difficult to disentangle in
terms of separate spheres of `lay beliefs' and `medical expertise'. Both were
called upon to construct a meaningful account of the unfolding events, what
Hyden refers to as `illness as narrative', integrating `the symptoms and
consequences of the illness into a new whole' (Hyden 1997: 54).
A more detailed analysis of the onset of arthritis, from a long interview
with another respondent from the same study, illustrated how contact with
medical personnel, and members of a social network, including work mates,
could provide complex settings in which the contingencies of illness onset
might occur. The development of symptoms, in this case, could not be
pinpointed to a particular event, but emerged over several months. Visits to
the general practitioner began to suggest that her `aches and pains' were
more than normal wear and tear, and on one occasion the doctor mentioned
that the condition might be `rheumatoid' arthritis, prescribing aspirin for
her symptoms. She stated:

By that time I was beginning to think it was a bit more than just a bit
of weakness, because I have a friend in London, she's had arthritis since
she was about 30. She's had operations on her feet and it did set me
thinking a bit, when I started to feel a bit better with the aspirin I thought
Oh well its going (Bury 1988: 97).

Throughout this period however, the doctor's reference to `rheumatoid'

played on her mind, contrasting as it did with more general references to a
less threatening `rheumatism'. Then, one day, she became ill at work. To
quote her once more:

It seemed to come and go a little bit until March, and one day I went
out at my lunch hour and I did some shopping and I felt really quite ill.
One of the girls said, when I got back, was I alright, and I said, well
I don't feel too good, because every bone hurt, I don't think there was a
bone that didn't hurt. But I just thought it was, maybe, flu coming on or
something, but with every bone hurting (1988: 97).

This patient's story continued to unfold. Her earlier optimism now had to
be revisited, and her fears of a more serious disorder took on renewed
significance. Within weeks of her `flu like' illness, her GP had sent her for
blood tests which confirmed that she probably did have rheumatoid
arthritis. Particular difficulties arose at home, due partly to the fact that her
husband was already suffering from heart disease and this made it difficult
for her to disclose her own difficulties (Bury 1988: 98±100). In fact, during
the interviews with this particular woman, family members gave various
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 Illness narratives: fact or fiction? 271

accounts of how they had perceived the changes taking place, sometimes in
accord and sometimes at variance with the woman's own account.
Throughout these chronic illness narratives it was found that the
`biographical disruption' occasioned by the occurrence of illness, led to a
re-examination of personal, familial and work-related issues that were
associated with the onset and unfolding of the condition. But it also led to a
growing familiarity with current medical thought, for example on whether
the arthritis might be confirmed by blood tests, treated with aspirin and
other drugs, or be related to stress or inheritance. Thus, both categorical and
relational aspects of disease and illness could be found interwoven into these
patients' narratives. Here `narratives about illness', drawing on different
types of expert knowledge, came into play (Hyden 1997: 54) feeding into the
`illness narratives' being constructed by the patient.
It should be noted in passing that work outside the patient context, on the
narrative form of lay beliefs about the contingencies surrounding the occur-
rence of illness, also reveals its dual character. Respondents in Davison's
South Wales study of heart disease, as both a life-threatening and chronic
disorder (Davison et al. 1991, 1992) has shown how lay accounts draw on
ideas from bio-medicine and health promotion about the connections
between risk behaviours and disease onset (smoking, diet and alcohol, for
example) while at the same time fashioning this knowledge in the context of
observations made concerning the environment in everyday settings. Whilst
heart disease is accepted as a product of unhealthy lifestyle in some people,
it is recognised that this is not always the case.
Stories of individuals within the family or community who live high-risk
lives and are clearly `candidates' for the disease, but who do not succumb,
abound, and provide lay correctives to mechanistic views of risk. Indeed,
somewhat ironically, this study suggests that the `contingent narratives' in
lay accounts of disease causation may expose serious flaws in professional
modes of health-promoting communication on the topic, producing, instead,
`lay' observations of disease occurrence that parallel epidemiological accounts.
Davison et al. comment that: `In our observation, popular belief and knowl-
edge concerning the relationship of health to heredity, social conditions and
the environment may be more in step with scientific epidemiology than the
lifestyle-centred orientation of the health promotion world' (1992: 683).
Lay accounts of the onset of illness and the nature of disease causation
and occurrence, quickly spill over, at least among sufferers, into accounts
of what is done in the face of illness. Here, chronic illness narratives, in
particular, are concerned with the immediate reactions of family and friends
to growing difficulties and the steps that are taken to mitigate the effects
of symptoms, including the nature of treatments that may be offered by
doctors. Here the meaning of illness concerns the practical as well as
emotional consequences of managing symptoms in everyday life.
Various reports in the research literature testify to the importance of the
practical management of illness in patients' accounts. In eliciting patients'
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272 Mike Bury

stories it is important to note the centrality of these everyday and mundane

dimensions of experience, before engaging in more detailed analysis of the
`deeper' narrative forms that may be employed. Aspects of normalisation,
coping, and strategic management of chronic illness figure prominently in
patients' `contingent narratives' (what Riessman calls `habitual narratives',
about `what happened in general' (Riessman 1990: 1196)).
Normalisation as a concept means two kinds of process in patients' experi-
ence of chronicity. On the one hand patients may well try to `normalise' in
the sense of keeping their pre-illness lifestyle and identity intact. This may
involve the maintenance of as many activities as possible, and the disguising
or minimisation of symptoms in behaviour and in accounting processes.
Research on diabetes (Kelleher 1988) and colitis (Kelly 1992) for example,
has shown varieties of normalisation along these lines. Kelleher argues that
minimising symptoms `allows feelings of being different from others to be
pushed backstage' (1988: 41). But normalisation may also mean the in-
corporation of illness into the patient's changed lifestyle. `Normal life' is
redesignated as containing the illness, and being open about it. Under these
circumstances, the stories people tell of themselves are likely to disclose
illness, rather than disguise it, signalling changes in identity rather than
preserving earlier appearances.
`Coping' as a term is used widely in the research literature on chronic
illness. Elsewhere I have discussed the strengths and weaknesses of the
concept for a sociology of chronic illness (Bury 1991). But the importance of
coping in the context of illness narratives lies in the link it makes between
the mundane and the moral components of story telling. As Kelly has noted,
`people develop a sense of self, and attempt to construct a public identity for
themselves on the basis of the way they talk about coping' (Kelly 1994: 6
emphasis in the original). Such talk may deal with the practical management
of the illness, how symptoms are `put up' with at the cognitive level, or with
interpersonal matters such as disclosure and revelation (Kelly 1994: 5) and
the responses of family and friends. For example in an extended passage
from an interview with a young patient suffering the onset of the distressing
symptoms of colitis, many of these elements were clearly in evidence, and the
following extract throws them into relief:

I went home from University. This was still April. Went home, went to
bed. My Mother called the doctor . . . He wouldn't say what it was. My
Mother of course by this time was very worried, and also I wasn't
eating. I was dashing to the loo. Y'know folk would come and see me to
try to cheer me up, y'know what students are like. `We'll go and cheer
Donna up.' That was the last thing I wanted. I just wanted to sleep . . .
[Eventually] the surgeon came to the house and said `I think we should
have you in . . . We'll even get the blue flashing light for you when we take
you in' . . . that was meant to be the highlight of my day, getting me
this blue flashing light (Kelly 1994: 5).
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 Illness narratives: fact or fiction? 273

But Kelly makes it clear in his analysis that talk of this kind is itself a means
of coping in dealing with such contingencies; not so much in what is talked
about, but in how the different components of living with illness are confided
or presented to others: `Speech practices are therefore not just a represen-
tation of reality. They integrate the human actors into their social world.
The speech allows for a means for interpreting, and acting in, the world; it is
one of the principal ways in which the self is presented to the outside world'
(Kelly 1994: 13). Put in other terms, narrative is often performative in
character, as `narrative makes actions intelligible to the self and others, by
showing the part they play within an intentional project' (Skultans 2000: 9,
see also Williams 2000: 137).
If `coping' refers to aspects of how people maintain some sense of worth
in the face of intrusive symptoms (Bury 1991), the term `strategy' has been
employed in studies of illness in order to distinguish the mobilisation of
resources in the wider social environment (including those from health and
welfare agencies) from the more psychosocial issues of normalisation and
coping (Bury 1997: 131±2). Here, patients' accounts touch on such matters
as the strategic management of time and the pacing of activities in the home,
the range of support that might or might not be available from the wider
social network, the impact of illness on work and income, and efforts to
overcome social isolation.
For example, in a study of disabling illness in the workplace, Pinder
(1995) has outlined the many contingencies that affect the impact of chronic
illness on paid employment. In a detailed examination of narratives pro-
vided by women suffering, again, from arthritis, Pinder shows how pain and
disability interact with a variety of factors in the workplace. In the case of
`Sally', the importance of being well educated, and having secured a good
job prior to the onset of her condition, meant that she was managing its
impact at work in a relatively favourable context, unlike others in Pinder's
study. This case also showed that factors such as the attitude of a supervisor
to illness, the `pacing' of everyday tasks, and the careful protection of week-
end rest in order to `recharge your batteries . . . to sort of get you ready for
Monday' allowed Sally to maintain her job through the illness's exacer-
bations and remissions (Pinder 1995: 619). Sally stated:

I really try to make sure that I go to bed at a good time. If I get to bed
late it's fatal. I'm tired, and I can't work when I'm tired . . . It's not the
sort of job you can do when you feel tired, because you do have to think
and concentrate. If it was something mindless, it wouldn't matter so
much, if it was just copy typing or something (Pinder 1995: 619).

Pinder also makes clear, however, that her respondents were not only
concerned with strategies to deal with the constraints of symptoms in the
context of working life, but also with the need to present themselves as
`morally competent actors' (1995: 624). The link between chronic illness and
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274 Mike Bury

identity was especially important in light of changes in the body that might
clash with culturally approved appearances, and in some cases be difficult to
handle because of a lack of visible signs. Here it is the person's self image,
and identity as a `culturally competent' person, that comes to the fore, and
this more moral dimension of experience and narration now needs to be
considered more fully.

Moral narratives
If contingent narratives describe events, their proximate causes and their
unfolding effects in relation to the performative in everyday life, moral
narratives introduce an evaluative dimension into the links between the
personal and the social. Here, valuations enter the picture, as sufferers seek
to account for and perhaps justify themselves in the altered relations of
body, self and society brought about by illness. If narratives represent an
`ordering of experience' in the face of disruptive experiences they also give
expression to (sometimes) concealed `dynamic relations' between people and
their social contexts (Good 1994: 161).
In Williams' paper on Narrative Reconstruction, for example, the re-
ordering of experience as the result of illness (in this case, once more, of
rheumatoid arthritis) involves the consideration of patients' beliefs about
the aetiology of the condition, and its place in their lives. But the lay
narratives Williams describes bring together moral considerations which
connect family background, coincidences of symptoms and biographical
events, and the particular social contexts in which some of them occurred.
One man's account focused particularly on events surrounding exposure to
toxic substances in the workplace and the onset of his illness (Williams 1984:
183). Through his narrative this respondent could present himself as an
active and politically aware individual, as well as a victim of circumstance.
`Bill' stated:

I didn't associate it with anything to do with the work at the time, but
I think it was chemically induced. I worked with a lot of chemicals,
acetone and what have you. We washed our hands in it, we had cuts, and
we absorbed it. Now, I'll tell you this because it seems to be related. The
men that I worked with who are all much older than me . . . they all
complained of the same thing, you know, their hands started to puff up. It
seems very odd (Williams 1984: 181)

More importantly, perhaps, in the current context, is the example of `Gill' in

Williams' account. For Gill, the onset and development of illness interacted
powerfully with other events in her life, including her daughter leaving home,
the death of her husband, and then the death of her son in a motorcycle
accident. As time went on, the meaning of illness in this woman's life went
beyond the impact of events to notions of guilt and fatalism. Williams
describes how Gill's story involved a loss of religious faith and by the same
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 Illness narratives: fact or fiction? 275

token a sense that illness might represent a `loss of grace'. When the moral
opprobrium implied by this was too much to bear Gill moved back and
forth between various views of the body, including stress and parts `wearing
out' (Williams 1984: 191). She stated:

It's the old Adam, we've all got to be ill. No . . . well, I don't know,
certainly things like osteoarthritis, you're bound to get worn out parts,
like cars . . . Mind you, I sometimes wonder whether arthritis is self
inflicted . . . not consciously. You know your own body says, `right shut-
up, sit down, and do nothing'. I feel very strongly about myself that this
happened to me, that one part of my head said `if you won't put the
brakes on, I will'. Because I had many years of hard physical work, you
know ± washing and ironing and cooking and shopping and carting kids
around and carrying babies and feeding babies and putting babies to
bed . . . That with the stress on top, I'm sure that I just cut out, I just blew
a fuse (1984: 191).

As can clearly be seen here narrative forms suggesting culpability can be

combined with those that exonerate the individual from blame, and help to
maintain self worth. As Alan Young (1981) has pointed out, consistency in
accounting for illness may not always be an overriding concern in lay views
or in social interaction. Riessman (1990) has also underlined the tensions
that can be set up in personal narratives, as a moral stance is developed in
relation to the many conflicting events occurring in people's lives.
In a later paper by Williams (1993), the theme of morality in chronic
illness is developed by locating patients' stories within a cultural framework
that increasingly portrays health as a virtuous state. Although `illness may
not itself be regarded as a sin' (1993: 92), current health promotion activities
reinforce the view that much illness results from `inappropriate' individual
behaviours. In examining the particular narrative of one patient's illness,
that of `Mrs Fields', Williams describes how `coping strategies' designed to
maximise normal activities in the home, `revealed a vulnerability and a sense
of urgency' which amounted to the `pursuit of virtue' (1993: 96).
Briefly, three dimensions of `virtue' in this narrative articulated the con-
nections between self and society. In the first place, Mrs Field, a widow, was
concerned to avoid being regarded as a burden, especially to her two sons,
who acted as a potential resource for her. The idea and fear of being seen
as a burden will be familiar to all those who have studied chronic illness,
especially as it interacts with old age, especially very old age (e.g. Bury and
Holme 1991: 122). Part of the moral dimension of dependency is that it
threatens a sense of reciprocity, raising anxieties that the limits of tolerance
of valued others may all too soon be reached.
Second, Mrs Field's account of her illness linked her need to be seen as
independent with a sense of orderliness and cleanliness in the home. The
disabling consequences of her illness threatened to undermine her ability to
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276 Mike Bury

present herself and her home as respectable. Fears of being seen as having
`let herself go' or not `being clean', for example by a visiting district nurse,
could be reconciled by insisting that people must `take me as I am' (1993:
99). Two extracts in Mrs Field's own words illustrate the point:

The other week, the district nurse came running in saying, `Do you mind
if I use your toilet?' Now the first thought in my mind was `She's a nurse,
they're particular, she wouldn't ask to go to my toilet if I was dirty'. You
know, you think you've achieved something. I know it may sound simple
to you, but it's not. That was something important. She can't think I'm
careless, and she's not frightened of touching anything in the house.
I'm not so posh . . . but I'm comfortable. If anyone comes along and they
don't like it . . . what can I do about it? I'm fortunate to keep it as straight
as it is. If somebody's coming they take me as I am because doing too
much I could cause myself a flare-up? Why should I do it to cover
something up? They must come in and find me as I am day to day, which
is right (Williams 1993: 98±99).

Finally, Mrs Field's moral universe extended to the world outside the home,
expressed in her concerns and worry about falling into debt. Williams states
that `In the context of Mrs Field's account, being in debt, like being dirty or
untidy, could be taken to mean that she was careless, or that she was letting
herself go' (1993: 101). Effective control over money and the prompt pay-
ment of bills helped to reinforce a sense of virtuous living that reduced a
sense of loss brought about by illness.
It should be noted, perhaps, that fears of the `dirty' side of illness are, of
course, a feature of many forms of chronic illness, especially those with
symptoms that breach the boundaries of the body. In Pinder's study of
arthritis already cited, she notes the impact of bodies that are `flawed or
conspicuously ill' on a sense of social order (Pinder 1995: 624, see also Good
1994: 98±99 on the links between the body and the rituals of restorative
healing).
The moral qualities of illness narratives, however, are not confined to the
maintenance of `normal appearances' and the virtuous `presentation of self ',
important though these are to many people with chronic disorders (Nijhof
1995 for example, discusses narratives concerned with `shame' brought
about by changes in appearance and behaviour due to Parkinson's disease).
In the 1990s a more `self development' dimension to illness narratives could
also be detected, especially in the American literature. Here, patients' stories
speak to illness as a form of disruption that can be turned into self discovery
and renewal. The idea of people's active engagement with their illness, of
effecting a `come back' approach to the disruption involved, to use Corbin
and Strauss' (1991) phrase, is developed to counteract a static and wholly
negative view of illness and its effects, as well as to suggest a more evaluative
view of medical care by patients.
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 Illness narratives: fact or fiction? 277

The work of Frank, in using both his own biographical experience (Frank
1991, 1995) and the autobiographical narratives of others (Frank 1997)
provides an eloquent espousal of these more positive moral dimensions of
illness narratives in what he dubs the `remission society' (Frank 1995) where
large numbers of people live with chronic disorders, or in states of recovery
short of cure. In such contexts, Frank argues, people strive to be `success-
fully ill' (Frank 1997: 117) and illness and suffering present people with a
`moral opening for witness and change' (1997: 141). Through illness, and
in sometimes difficult encounters with health care professionals (many of
whom are reported by Frank as marginalising the personal and existential
dimensions of illness), people are able to identify more clearly their own
personal values and sense of self hood. Under conditions of adversity people
may understand illness `as an active responsibility first to understand the
self, and then to place the self within an extensive ecology of relationships'
(Frank 1997: 142). The latter may refer to family relationships, or to those in
the wider society. Out of the badness of illness comes some good, as people
attempt to rescue valued life, against the onslaught of symptoms and their
effects on self and others. As Charmaz has put it: `chronic illness often
crystallizes vital lessons about living' (Charmaz 1991: vii).
Whilst this form of `postmodern morality' of renewal and change pre-
sented by illness resonates with much that is said and written about self
identity in contemporary societies, such narratives are, perhaps, more
contradictory than Frank and others allow. The emphasis on `suffering' and
`witness' in such accounts (or in the `accounts of the accounts') carry a
strong echo of religious thought as well as secular morality. Religious (not
to say Christian) connotations of redemption through suffering in such
writings have not gone unnoticed (Williams 1998: 241). The individual in
pain and distress is portrayed at times in romantic if not sentimental terms,
and the actual relationships in which the individual is embedded may be lost
in an overemphasis on positive `personal narratives' that are uncritically
reproduced by the sociological author.
In this form of narrative analysis another important issue may also be
ignored, namely the function that moral narratives have in establishing social
distance as well as personal worth. By developing a narrative of `successful
living' in the face of illness, or by suggesting that reflexive and `meaningful'
deliberations on experience have been achieved, the individual may, of
course, be self praising or implying criticism of those that fail. Indeed, failure
has come to be the `great modern taboo' (Sennett 1999: 118) unwittingly
reinforced, perhaps, by those stressing the value of success in all areas of life,
including those of illness and disability. The question of what is explicit and
what is hidden in narratives brings us to their `core' forms, which may not
always be comprehended by those constructing them.

Core narratives
So far this analysis has presented a view of chronic illness narratives as
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278 Mike Bury

revealed in the accounts patients give to researchers, and, to a lesser degree,

those provided in first-hand accounts published for a wider audience. Such
narratives seek to order experience in a temporal sequence, as the events of
the illness unfold (its onset, diagnosis and treatment) and give expression to
the changed relationship between body, self and society which such experi-
ence invariably entails. Although it may be argued that `coping with the
physical body has to precede coping with relationships' (Kelly and Field
1996: 192) it is clear that the need to deal with changes in identity and `self
presentation' are part and parcel of the unfolding of events.
However, the `contingent' and `moral' components of experience and of
`narrative reconstruction' involved in these processes does not exhaust the
levels, one might even say `functions', of narrative form. When lay people
construct and present narratives of their experience they do so within
cultural settings which provide specific forms of language, clicheÂs, motifs,
references and other elements of linguistic and symbolic repertoires which
allow and constrain what is said and how it is expressed. The creative and
active elements in personal narratives do not, though, mean that the speaker
can always know or control what is being revealed or conveyed to others.
It has been argued in a number of different intellectual contexts, but
perhaps most notably in psychology, that particular stories or accounts
draw upon and constitute `core narratives', whether consciously or other-
wise. There are two main ways in which, at least in the present analysis,
these can be summarised.
Following the early work of Burke (1937) and the more recent work of
writers such as Gergen and Gergen (1983), Kelly (1994) has identified a
series of `genres' that can be seen to underpin all forms of narrative. These
include: epic or heroic; tragic; comic or ironic; disembodied or romantic;
and didactic. Although individuals may, of course, draw on more than one
of these genres, it may equally be the case that the reconstruction of identity
and interaction with others is expressed more or less within a particular
narrative form. There is not space to deal with all of these genres here, but
Kelly and Dickinson (1997) provide a useful discussion (based on a study of
ulcerative colitis) which illustrates some of the elements involved.
Kelly and Dickinson present two cases which contain identifiable elements
of comic/ironic and epic/heroic narratives. With respect to the former, the
example of `Josephine' suggests that, although pain and extreme discomfort
may be present, one way of expressing a `turning of the tide', towards a
more positive view of the experience, is to distance the self through humour.
At one point in her account she states:

I have a completely different attitude to life through it all. I have now

accepted that I am OK, y'know, I mean I've got bad points, I've got good
points too, and I feel that because I can accept myself as a person
people can accept me as a I am . . . I am not a freak, don't be ridiculous,
how would I possibly think. . . . Cos I never think of myself as an
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 Illness narratives: fact or fiction? 279

ileostomist. Because I would never say because I wear glasses I am a

spectacalist . . . It just amuses me eh when somebody has to say `I am an
ileostomist'. Cos I always want to say `I'm Josephine, I am a spectacalist,
I am a false teethist' (Kelly and Dickinson 1997: 261).

In contrast, the story presented by `Martin' gives expression to elements of

tragedy and heroism in illness. Martin's illness takes a heavy toll on his
body, and pulls him down to a very low level, in which his life seems to be
threatened. The tests and treatment he receives for his illness only seem to
make matters worse, and every attempt he makes to `assert his own control
over what is happening' is thwarted (Kelly and Dickinson 1997: 262). Yet
his determination to fight his illness leads him to read up on the subject.
Martin states:

I tried, y'know to make it a challenge, y'know, eh. I know it's an illness,

a disease that er, but er, to my mind it was a challenge . . . Well anyway,
try to make it something that I would overcome, er, if possible, er,
y'know, er, fight it, if you like, y'know'. So I started to go to the library
and read up all these texts books. And eh, y'know, read about all become
malignant and all that sort of things. And I thought `Och well'. I didna
really bother me too much, cos although it said after 10 years or so. But
even at that I thought, well, I know I'm getting now barium enemas
and all this, em, every couple of years . . . So I thought `Well, the disease
itself can lead to an operation, but cancer itself would lead to an
operation, but no worse than the disease itself'. So that didn't worry
me . . . (Kelly and Dickinson 1997: 263).

Kelly and Dickinson go on to add that in this account `Martin is using a

trope very much invoked in late 20th everyday thinking about bodily illness.
Media accounts of anyone suffering from a life threatening illness are almost
invariably couched in term of a courageous ``fight'' by the sufferer' (1997:
268).
Through the employment of core narratives, people can both account for
events and give shape to them in terms of the way in which they feel they
relate to self and others. Whether self presentation in `comic' or `heroic'
form is a conscious or unconscious process is less important, perhaps, than
the fact that such `core' narrative forms are available to people as cultural
resources with which to fashion experience. By the same token, narrative
`genres' may `catch people up' in presenting themselves in unfavourable as
well as favourable lights. We cannot know, for example, from the narratives
provided by Kelly and Dickinson how other people in Josephine and
Martin's lives hear their stories and whether others accept or reject the self
presentations that are being offered. As has been noted elsewhere, meanings
are always `at risk' in the context of demands and constraints people face in
everyday settings, most notably within the family (Bury 1988).
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280 Mike Bury

However, although narrative forms of these kinds are frequently shot

through with ambiguity and complexity, it is still possible to detect the ways
in which narrative `genres' coalesce into more obviously identifiable types,
and this brings us to the second way in which core narratives may be
approached.
In a long essay on patient narratives, in the context of multiple sclerosis,
Robinson (1990) presents three major types of core narratives, on this
occasion drawing on a later paper by Gergen and Gergen (1986). This
approach suggests that narratives may convey `stable', `progressive' or
`regressive' qualities. In each of these narratives, `causal linkages between
one event and another are orchestrated and stressed' (Robinson 1990: 1176).
Robinson goes on to add that, `A progressive narrative moves towards the
personally valued goal(s), a regressive narrative moves away from such
valued goal(s), and a stable narrative evaluatively sustains the same position
in relation to the valued goals throughout the narrative sequence' (1990:
1176).
Robinson suggests that `stable narratives' are `less engaging' than others,
in that they tend to relate a sequence of events without great drama, a form
of story telling which has been alluded to above under the heading of
`contingent narratives'. Often the events are encoded in a way which draws
heavily on the `culture of biomedicine' and where `valued personal goals' are
not at the forefront of the account (Robinson 1990: 1178). `Progressive
narratives' on the other hand, present the individual in a more positive light,
where the `essence is that of a positive construction of (putatively negative)
events and experiences' (1990: 1178). This connects with the more recent
kind of `moral analysis' offered by writers such as Frank and Charmaz. The
ironic/humorous account of `Josephine', given above, can also be seen in
this light (Kelly and Dickinson 1997: 261). `Regressive narratives' are those
in which there is `a continual and increasing discrepancy between ``valued
personal goals'' and the possibility of their attainment' (Robinson 1990:
1178). Robinson notes that regressive narratives in their extreme form turn
on `tragic' accounts (of the sort presented by `Martin', above) though in
Robinson's own work on MS these were in a minority.
So, while core narratives may reveal deep-seated cultural forms, they can
also be analysed within a somewhat more mundane or descriptive frame-
work. The use of a `stable', `progressive' and `regressive' framework allows
for a form of analysis that safeguards against over interpreting the range of
meanings conveyed by patients' accounts. It is important to underline,
however, that whatever narrative form may be identified in analysis, many
accounts move from one to another, from tragic to ironic, for example, or
from regressive to stable. To repeat an earlier point: consistency in narrative
accounts may well be sought or achieved by lay people or patients, but it
may not. Much will depend on the context in which the narrative is being
constructed and presented, and on the intentional acts which they help to
constitute.
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 Illness narratives: fact or fiction? 281

Concluding remarks

As has been intimated above, personal narratives are means by which the
links between body, self and society are articulated. As such they are an
attractive subject for sociological analysis, especially in the context of
chronic illness, where `biographical reflection' or `biographical reconstruc-
tion' (Carricaburu and Pierret 1995) may occur, against the backdrop of
disruptive events and experiences. `Talk', in this sense, is part of the attempt
to normalise in the face of serious and threatening symptoms, not simply
a commentary upon it (Kelly 1994: 6). At the same time, this paper has
suggested that caution needs to be exercised in dealing with chronic illness
narratives. Not only may the mundane aspects of experience (and of nar-
rative accounts) be underestimated in a concern with elaborating moral
virtues or `deep structures', but the shaping of narratives by motive and
context may be downplayed if personal accounts are taken only at face
value. It has been noted that some recent analysts have tended to treat
patient narratives (especially published autobiographical accounts of illness)
as if they represented a form of unalloyed subjective truth, the authentic
voice of the patient `underdog' as opposed to the voice of dominant medicine
or that produced by more quantitative survey data (c.f. Gerhardt 1990:
1152). Rather, narratives take many forms, have many uses and serve many
purposes, for individuals and for social groups. In these circumstances links
between chronic illness and self-identity are neither self evident or unprob-
lematic. If they were, the need for an interpretative act on the part of the
investigator would be redundant. The desire to represent the `patients'
viewpoint' does not mean that an evaluative and contextual approach to
patient narratives is not required. Quite the reverse.
As Riessman (1990, 1993) has pointed out, narrative analysis takes us to
the heart of interpretive sociology. The interpretive act involves a series of
steps in trying to understand the `inevitable gap between the experience . . .
and any communication about it' (Riessman 1993: 10). Most importantly,
narrative analysis leads the researcher to ask `why was the story told that
way?' (1993: 2).
The distinction between narrative analysis and other forms of qualitative
analysis lies in the way lay people's accounts or stories are dealt with. In
much content analysis of interview data, various themes are identified and
then illustrated with quotes from across the interview data set; hopefully,
across the whole range of interviews. This can be done with the use of such
devices as `topic cards', or, now, with their computerised equivalents, which
provide a summary of `all comments' about a given issue (Scambler and
Hopkins 1990: 1188). In narrative analysis the interview or story is taken
as a whole, and set in the context in which it has been generated and told.
`Unlike traditional qualitative methods, this approach does not fragment
the text into discrete categories for coding purposes, but, instead, identifies
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282 Mike Bury

longer stretches of talk that take the form of narrative ± a discourse

organised around time and consequential events in a ``world'' created by the
narrator' (Riessman 1990: 1195, see also Becker 1999: 207±211).
Comparisons between whole accounts across an interview sample can
then provide the means of identifying the range of narrative forms that have
been discussed above. In other words, the balance between contingent, moral
and core narratives among respondents' accounts can then be assessed.
Indeed, it may be possible to use other forms of data (e.g. observational
data), or comparisons with other published data sets in similar areas, to
increase a sense of validity in the interpretation being offered.
In any event, the interpretation and categorisation of narratives generates
second-order constructs that are of theoretical interest. Although the soci-
ologist may be concerned to produce an authentic account of the person's
(or group's) experience, this is, of course, of a different kind from the
account itself. If it were not, then `words could speak for themselves' and,
again, the need for interpretation would fall. But with interpretation the
question of who should determine what a narrative means is raised. Riess-
man suggests that the reader has to judge the fit between what the teller says
and what the analyst offers by way of interpretation, and although the teller
may not have the final word in such a process, the teller `has the first word
on which the interpretation depends' (Riessman 1993: 52). At the same time,
it is important to recognise that `narratives are always edited versions of
reality, not objective and impartial descriptions of it . . . and interviewees
always make choices about what to divulge' (Riessman 1990: 1197). In this
sense chronic illness narratives might be called `factions' rather than either
fact or fiction1. The creation of meaning also has to be seen in relation to the
structure of narratives, which may exist `prior to their content' (Young 1995:
169, see also Mattingly 1998: 13).
As has been noted, the starting point for much of the current interest
in illness narratives has been the perceived need, expressed most clearly,
perhaps, by Kleinman (1988) to `witness' the suffering of those with serious,
and especially disabling chronic disorders. Despite the religious overtones of
such sentiments they also stem from a secular desire to limit the sometimes
dehumanising effects of a medicalised society, and the effects of forms of
medical practice that deliver increasing technical sophistication but fail to
offer `comfort and care' for patients as whole human beings.
Though this impetus remains important, however, the present discussion
suggests that sociological and medical attention to narratives needs to dis-
tinguish different levels of experience and the verbal accounting processes
relating to them. This leads the analysis to a wider understanding of the
contexts and the `vocabulary of motives' in which narrative forms and thus
self-identity are constructed and employed. It has been argued here that
attention to narratives has the ability to provide clues to the ways in which
body, self and society are linked in late modern cultures. It should always be
remembered that `A particular self is constituted through these narratives,
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 Illness narratives: fact or fiction? 283

occasioned by the presence of a listener, her questions and comments.

Typically, the moral character of the protagonist is maintained' (Riessman
1990: 1195). In this sense, chronic illness narratives are important for a
better understanding of the social fabric, and the contradictions of social
interaction and self-presentation, not simply a `truer' picture of illness or the
basis for improving medical practice, important though the latter may be.

Address for correspondence: Michael Bury, Department of Social and Political

Science, Royal Holloway, University of London, Egham, Surrey, TW20 0EX
e-mail: [email protected]

Note

1 I am grateful to Ian Robinson for this suggestion.

References

Armstrong, D. (1986) `The problem of the whole-person in holistic medicine', 1,

27±36.
Balint, M. (1955) `The doctor, the patient and the illness', Lancet, 1, 283±688.
Becker, G. (1999) Disrupted Lives: How People Create Meaning in a Chaotic World.
California, University of California Press.
Burke, K. (1937) Attitudes Towards History (3rd Edition) Berkely: University of
California Press.
Bury, M.R. (1982) Chronic illness as biographical disruption, Sociology of Health
and Illness, 4, 2, 167±82
Bury, M.R. (1988) Meanings at risk: the experience of arthritis. In Anderson, R. and
Bury, M. (eds) Living with Chronic Illness: the Experience of Patients and their
Families London, Unwin Hyman.
Bury, M.R. (1991) The sociology of chronic illness: a review of research and
prospects, Sociology of Health and Illness, 13, 4: 451±68.
Bury, M.R. (1997) Health and Illness in a Changing Society. London, Routledge.
Bury, M.R. (1998) Postmodernity and health. In Scambler, G. and Higgs, G. (eds)
Modernity, Medicine and Health. London: Routledge.
Bury, M. and Holme, A. (1991) Life after Ninety. London: Routledge.
Carricaburu, D. and Pierret, J. (1995) From biographical disruption to biographical
reinforcement: the case of HIV positive men, Sociology of Health and Illness, 17, 1,
65±88.
Charmaz, K. (1991) Good Days, Bad Days: the Self in Chronic Illness and Time. New
Brunswick, Rutgers University Press.
Corbin, J. and Strauss, A. (1991) Comeback: the process of overcoming disability. In
Albrecht, G.L. and Levy, J.A. (eds) Advances in Medical Sociology Volume 2.
Greenwich Connecticut: JAI Press.
Davison, C., Davey Smith, G. and Frankel, S. (1991) Lay epidemiology and the
prevention paradox: the implications of coronary candidacy for health promotion,
Sociology of Health and Illness, 13, 1, 1±19.
# Blackwell Publishers Ltd/Editorial Board 2001
284 Mike Bury

Davison, C., Frankel, S. and Davey Smith, G. (1992) The limits of popular lifestyle;
re-assessing `fatalism' in the popular culture of illness prevention, Social Science
and Medicine, 34, 6: 675±85.
Eisenberg, L. (1977) Disease and illness: distinctions between popular and pro-
fessional ideas of sickness, Culture Medicine and Psychiatry, 1, 9±23.
Featherstone, M. (1992) The heroic and everyday life, Theory, Culture and Society 9,
159±82.
Frank, A. (1991) The Will of the Body. Chicago: Chicago University Press
Frank, A. (1995) The Wounded Storyteller: Body, Illness and Ethics. Chicago:
University of Chicago Press.
Frank, A. (1997) Illness as moral occasion: restoring agency to ill people, Health, 1,
2, 131±48.
Freidson, E. (1970) Profession of Medicine: a Study in the Sociology of Applied
Knowledge. Chicago: University of Chicago Press.
Gellner, E. (1992) Reason and Culture. Oxford: Blackwell.
Gergen, K.J. and Gergen, M.M. (1983) Narratives of the self. In Sarbin, T.R. and
Scheibe, K.E. (eds) Studies in Social Identity. New York: Praeger.
Gergen, K.J. and Gergen, M.M. (1986) Narrative form and the construction of
psychological science. In Sarbin, T.R. (ed) Narrative Psychology: The Storied
Nature of Human Conduct. New York: Praeger.
Gerhardt, U. (1989) Ideas about Illness: an Intellectual and Political History of
Medical Sociology. London: Macmillan.
Gerhardt, U. (1990) Qualitative research on chronic illness: the issue and the story,
Social Science and Medicine, 30, 11, 1149±59.
Giddens, A. (1991) Modernity and Self Identity: Self and Society in the Late Modern
Era. Cambridge: Polity Press.
Good, Byron J. (1994) Medicine, Rationality and Experience: an Anthropological
Perspective. Cambridge, Cambridge University Press.
Greenhalgh, T. and Hurwitz, B. (1999) Why study narrative, British Medical Journal,
318, 48±50.
Hyden, Lars-Christer (1997) `Illness and narrative', Sociology of Health and Illness,
19, 1, 48±69.
Jewson, N. (1976) The disappearance of the sick man from medical cosmology,
Sociology, 10, 225±44
Johnson, M. (1987) The Body in the Mind: the Bodily Basis of Meaning, Imagination
and Reason. Chicago: University of Chicago Press.
Jones, Elwyn G. (1997) So many precious stories: a reflective narrative of
patient based medicine in general practice, 1996, British Medical Journal, 315,
1659±63.
Kelleher, D. (1988) Diabetes. London: Routledge.
Kelly, M. (1992) Colitis. London: Routledge.
Kelly, M. (1994) Coping with chronic illness: a sociological perspective. Inaugural
Lecture, University of Greenwich.
Kelly, M. and Dickinson, H. (1997) The narrative self in autobiographical accounts
of illness, The Sociological Review, 45, 2, 254±78.
Kelly, M. and Field, D. (1996) Medical sociology, chronic illness and the body,
Sociology of Health and Illness, 18, 2, 241±57.
Kleinman, A. (1988) The Illness Narratives: Suffering, Healing and the Human
Condition. New York: Basic Books.
# Blackwell Publishers Ltd/Editorial Board 2001
 Illness narratives: fact or fiction? 285

Lawrence, C. (1994) Medicine in the Making of Modern Britain 1700±1920. London:

Routledge.
Nijhof, G. (1995) Parkinsons's disease as a problem of shame in public appearance,
Sociology of Health and Illness, 17, 2, 193±205.
Mattingly, C. (1998) Healing dramas and clinical plots: the narrative structure of
experience. Cambridge: Cambridge University Press.
Pietroni, P. (1988) The Greening of Medicine. London: Gollanz.
Pinder, R. (1995) Bringing back the body without the blame? The experience of ill
and disabled people at work, Sociology of Health and Illness, 17, 5, 605±31.
Porter, R. (1997) The Greatest Benefit to Mankind: a Medical History of Humanity
from Antiquity to the Present. London: Harper Collins.
Ricouer, P. (1984) Time and Narrative: Volume 1. Chicago: University of Chicago
Press.
Riessman, C.K. (1990) Strategic uses of narrative in the presentation of self and
illness: a research note, Social Science and Medicine, 30, 11, 1195±200.
Riessman, C.K. (1993) Narrative Analysis. Newbury Park: Sage.
Risse, G.B. (1999) Mending Bodies, Saving Souls: a History of Hospitals. New York:
Oxford University Press.
Robinson, I. (1990) Personal narratives, social careers and medical courses:
analysing life trajectories in autobiographies of people with multiple sclerosis,
Social Science and Medicine, 30, 11, 1173±86.
Scambler, G. and Hopkins, A. (1990) Generating a model of epileptic stigma: the
role of qualitative analysis, Social Science and Medicine, 30, 11, 1187±94.
Sennett, R. (1999) The Corrosion of Character: the Personal Consequences of Work in
the New Capitalism. New York: Norton.
Skultans, V. (2000) Editorial. Narrative illness and the body, Anthropology and
Medicine, 7, 1, 5±13.
Strauss, A. (1995) (ed) Chronic Illness and the Quality of Life. St Louis: Mosby.
Taylor, C. (1989) Sources of the Self: the Making of the Modern Identity. Cambridge:
Cambridge University Press.
Watts, G. (1992) Pleasing the Patient. London: Faber and Faber.
Williams, G. (1984) The genesis of chronic illness: narrative reconstruction,
Sociology of Health and Illness, 6, 175±200.
Williams, G. (1993) Chronic illness and the pursuit of virtue in everyday life. In
Radley, A. (ed) Worlds of Illness: Biographical and Cultural Perspectives on Health
and Disease. London: Routledge.
Williams, G. (1998) The sociology of disability: towards a materialist phenomen-
ology. In Shakespeare, T. (ed) The Disability Reader: Social Science Perspectives.
London: Cassell.
Williams, G. (2000) Knowledge narratives, Anthropology and Medicine, 7, 1, 135±14.
Young, A. (1981) When rational man falls sick: an enquiry into some assumptions
made by medical anthropologists, Culture, Medicine and Society, 5, 317±35.
Young, A. (1995) The Harmony of Illusions: Inventing Post-traumatic Stress Disorder.
Princeton: Princeton University Press.

# Blackwell Publishers Ltd/Editorial Board 2001