Michael Bury

The sociology of chronic illness: a review of

research and prospects

Abstract This paper provides a review of research and debate in the held
of chronic illness, it lirstoutlincs some gerscral features of a
st)cit>logicai approach, and then goes on to use recent empirical
studies of chronic illness to illustrate sotnc of the main stages
involved. These include: onset and the problems ot explanation
and legitimation, the impact of treatment, and the development
of adaptive responses. An attempt is made todisttngutsh the use
of the terms 'copmg'. 'strategy' and 'style' in describing
adaptation. The paper argues that a sociological approach needs
to recognise the positive actions people take, as well as the
problems they face. In this way. diversity iti managing chrome
illness, and the continuing need for a person-baseti approaeh to
sociological work, are underlined

Introduction

Some years ago the Anierican soeioiogist. Herberl Blumer. made the
comment, often repeated since, that sociological interest in soeial problems
follows in the wake of soeietal definitions. What he might have added is
that sociologists also tetid to be more interested tn problems than in
people's responses to tackling them. In the field of ehronic illness, the
doeumentation of problems faced by patients, and !i) a lesser extent their
families, has usually dominated the research agenda, including sociological
research, fiighlighting the hidden burden of work and social relationships
(Blaxter 1976) for example, or the extent of poverty associated with
disabling illness (Townsend U?79) has. of course, been an important
corrective to a narrow medical view preoccupied by disease and its elinical
(or, at best, functional) sequelae, flowever, the emphasis on sueh
diffieulties and disadvantages has been at the ex|K-nse of studying the
responses and positive actions of those aftectcd.
Alongside descriptions of the burden of chronic illness, however,
research iindings have alstt appeared documenting the steps people take to

Soctology of Health Si Illness Voi /.? No. 4 1991 ISS,\ ONI - 98S9
452 Michael Bur\
manage, mitigate, or iuhipt to it, am) the meanings attached to these
actions. Part of this change in emphasis has ct)ftie about through the
development and application of more theoretically inforiiiecl approaches to
chronic illness. Interpretive soci(i!ogy, in particular, has tieveliipett a view
of people as agents, rathei than being nserely ihe products of the contexts
in which they live, interaetionist and phenonienological models of illness
have been explicated, as a tiieans of understanding belter the social basis ot"
the meanings of symptoms, and the negotiated reality actors fashion in
response to them (Gerhardt \'-W>).
Moreover, a series of empirical stutlies has emerged, more or less
explicitly employing such approaches. Larlier disquiet about the wisdom
of, or justilication Tor. sociologists studying specific medical complaints,
has given way to an aceumulali<in of studies of the lived reality of chtonic
illness. Though broad surveysof disability and morbidity remain imp(irtant,
especially to policy considerations (eg Martin ei a! i98M, [iiaxter i99())
qualitative research has been able to explore the diversity of everyday
experience which lies behind such aggregate data.
I'his paper reviews some of ihese theoretical and empirical developments.
In doing so. however, it also argues for greater conceptual consistency in
the employment of some ot the theoretical arguments, especially in the use
of terms such as Y'oping", "strategy" and 'style', in the analysis of adaptation
to chronic illness. Though these terms are impottant. they have been used
in ways which often confuse as much as clarify. Whilst there has been some
debate recently about methotiological issues in qualitative leseareh in
chronic Illness (eg West 1940. Scambler and Hopkins IM'-Xl) there has been
less consideration of key concepts and terms, important th<High these are
to methodological development. This paper attempts to redress this
imbalance, and invite further discussion on the issue.

icai approaches to chronic i

Chronie illness is, by definition, a long-term, and perhaps permanent,

e\ent in a person's life, hi the classical functionalist framework, illness is
eharacterised by dependencx, regression and. through encounters with
qualitied practitioners, hopefully tccover\. In chronic illness these features
are <^tten onlv partially characteristic of experience, overlaid as they are
with poor or limited recovery prospects. The time-scale involved makes it
important to bring into the picture a view of the illness in terms of both the
stages it pusses through and their interaction wiih the individual's age and
position in the life course. This 'unfokiing' or "emergent" eharaelcr of
chrt>nic illness makes it imperative that a sociological perspeetive places
experience within a temporal framework (Bury 19<S8, Robinson 1M8X).
Aeeordingly. my comments here follow a pathway starting with the initial
 T h e s o c i o l o g ) ot chri>nic i l l n e s s •i5^

dtsruption ot illness, then going on to the processes of explanation and

legitimation, before turning to tieatment and adaj)tation.

Disrupted biographies

As is now widely recognised, the onset of chronic illness represents an

assault not only on the person's physical self, but also on fhe person's sense
of identity, calling into doubt the person's self-worth ( C h a r m a / l'*83). Loss
of confidence in the body leads lo loss of eontidence in socia! interaetion.
More broadly, I have described this experience, of the onset of chronic
illness, as "biographical disruption' (Bury 1982). hollowing Strauss and
Cilaser's pioneering work (Strauss and (ilaser 1475. l'IH4) Ihis idea brings
into focus the tneaning of illness as well as the settnig m which it occurs,
ineluding in the latter ease, the lesources available to the individual. The
noiion of biography suggests that meaning and context in chronic illness
cannot easily be separated. 11iis may be espeeially relevant within modern
culture vvith its dualistic emphasis on the '•affirmation ol ordinary life'
(I'aylor 1WJ), as well as on lilc planning' (Bergcr ei al 1M74). Corbin and
Strauss (i'*S8) speak of "iUU.."s', bit>graphical bodv conceptions, which tie
together ihe subjective evpencnee of self in daily lilc and the relationship
this has to the body across the life course.
In a later paper (Burv I'-JHN) I distinguished two tvpes of "meaning' in
chronic illness. In tlie first place the "meaning' of illness lies in its
conseipwnces for ihc individual. The effects of the t)nset of disruptive
svmptoms on everyday life at home or at work, including, ft)r example,
giving time to managing symptoms or regimens (Locker 19S3) may be
uppermost. Ativice about svniptoni management ntav be sfuight. together
with a search for information, tioni other sufferers, self help grcuips or
aequaintanees. as (o fhe best methods of managing altered daily life,
mobilising and compensating foi loss t)f resources, in the cailv period of a
conditii)t}. practical management b \ individuals niuy be tentative and
uncertain, as trade-offs between the effects of svmptoms. and efforts to
minimise them, arc undertaken.
Second, the meaning of chronic illness \x\\\\ be seen in terms ot its
sii^inficafice. !iy this ! mean that different conditions carry with them
different connotations ami iniagerv, I'hesc diftefences may have a
profound inlluenee on how individuals regard themselves, and how they
tiiink others see them. ('hronic conditions v;iry itiai kedlv m terms o!" their
symbolic significance within segments of the cultural order, and these arc
bound to affect adaptation. Whilst these may eoale'sce into sjcreofypes (eg
of 'epilepfics' or "arthrihcs'), meanings surrounding illness often change as
they interact with different stages of ihe life eiunse. T!ic iminiet of such
categories on individuals and social inleraction !iiay not always be a
tcfleefion of neszativc associations. Disuuisinsz and ilisclosnm diagnosis and
454 Michael Bury
symptoms, for example, depends not only on their physical intrusiveness
within soeial contexts, buf also on their posifive and negative meanings
within a spccifie set of social relationships, C'hanges in symptoms over time
may affect social responses, and these in turn will intluence experience.
This interactive process can also be seen in the changing perceptions of
disease in historical time; the complex interaction between disease and the
social meanings which surround, or 'frame' it (Rosenberg 1989),
In everyday lite, chronic illness also creates what I have termed (after
Sahlins 1985) a situation ot "meanings at risk'(Bury 1988). In responding to
chronic illness, individuals constantly test the meanings attached to their
altered situation against the reality of everyday experience. It is a situation
of risk because mdividuals cannot be sure that their own developing
perceptions and detinitton of the situation' will be shared by others.
whether in the informal setting or in interactions with professional care-
givers. Calls for help may turn out to produce unwanted dependence and
calls for sympathy run the risk of rejection. Only fhe passage oi time and
trial and error can provide guidelines as to the nature of the risks involved
in living with a patticular condition, though a degtee of unpredictability
will always remain. Robinson (1988) tor example, shows that patients with
multiple sclerosis report being at risk of having their symptoms misunder-
stood as signs of mental illness, malingering or even being drunk by those
not in the know. Hven with those in the know, "any claims which allow
people social exemptions are likely to be scrutinised by others" (Robinson
1988: 113).
It is understandable, from this viewpoint, that studies such as Robinson's
should emphasise uncertainty as a key aspect of disruptive experience,
especially around the emergence and onset of the condition. Symptoms of
chronic illness, in their early stages often overlap with a range of normal
behaviours, making the problem of early diagnosis particularly difficult.
Interactions and negotiations with others abcmt the illness will be tentative,
with the person being unsure of the reality of the condition and yet being
pressed into seeking help by the growing insistence i>f symptoms, or as a
result of, or pressures from, significant others (Bury 1982. !988). in other
conditions onset might be more dramatieally disruptive, throwing extant
meanings sharply into relief. As Scamhier (1989) shows, in his study of
epilepsy. symptt)ms may appear trightemngly 'out of the blue', eausing the
individual not only to have to tace a changed situation, but also the
potentially stigmatising reactions of others. In other cases, such as renal
failure, onset may be either rapid or prolonged (J. Morgan 19K8).
These studies illustrate the range of "biographical disruption' occasioned
by the onset and early development of chronic illness. Experiences are not
only intlucnced by the social context in which tlie person lives, but by the
nature of the symptoms, and their perception by self and others.
Conditions which have stigmatising consequences (whether these are 'felt'
or enacted') such as epilepsy (Scambler 1989) or cancer (Macdonald 1988.
 The soeiology of chrome illness 455

Kelly 1986) may create an urgent need to reduce any possible negative
impact of the diagnosis. Kelly, for example, calls for the physician to
recognise the element of grief involved in cancer diagnosis and curative
surgery, and for communication with the patient around such feelings,
Bardiey (1988} suggests that doctors should adopt a strategy of working fo
impart a sense of strength U) eancer patients. !n other eonditions. such as
rheumatoid arthritis. (Bury 19S2) and multiple sclerosis {Robinson l'->88)
the early recognition and naming of the condition may. albeit temporarily,
help to clear the air' and reduce uncertainty. Initial diagtiosis may thus
both enable and eonstrain responses, (or example, helping some negotiations
within the family, hindermg others. However, as a condition develops, a
new set of issues to do with explanation and legitimation present
themselves.

Explanation and legitimation

Onec the initial onset and impact of a condition have (tecurred. individuals
begin to face the longer-term implications of their altered circumstances.
Information about a medieal condition may be gatherccL in terms of both
its aetiology and its progn(»sis, in order to answer tlic questions of why me.
why now? Frequently, of course, the answers arc less than wholly
satisfactory, so that more realist or fatalist response of "well, why not me',''
may ensue. Whilst medical knowledge may be important to patients in
their management of symptoms, several studies have shown that its
"explanatory coverage' is often less than satisfactory. In his study of
rheumatoid arthritis Williams found that medieal explanations of the
condition may be supplemented by "narrative reconstructions" which
attempt to place such inft)rmation within a more meaningful biographical
context (G. Williams 1984). Following Blaxter (1976). Seambler (1989)
emphasises the tendency towards rationalisation, as individuals with
epilepsy try to bring into line limited medical knowledge about, and
explanations of. aetiology and their paitieular experiences, Robinson
(1990) distinguishes the 'personal narratives' or stories individuals may
come to construct and communicate around their experience of ilhiess.
from biomedicat knowledge about the unfolding character of the disease
from whieh they are sulfering. Similarly, in a study of childhood leukemia,
Comaroff and Maguire (1981) found that parents went beyond the
explanations on offer within the medical eneounter (o establish a wider
picture of the condition and its possible aetiology, Hazards in the
environment, including, most notably, the possible role of nuclear energy,
have continued to figure in the lives of patients and parents living with this
condition.
Part of what is going on here concerns the questitni of legitimation.
Individuals not onlv wish to nain a measure oi control over their condition
45(1 Michael Eiury
by finding explanations that make sense in terms of their lite circumstances
and biographies, but they also wish to establish a proper sense of
perspective about the condition, and re-establish credibility in the face of
the assault on scit-hood which is involved. The term 'legitimation', here,
refers to the process ol attemptmg to repair disruption, and establish an
acceptable and legitimate place for the condition within the pcrst)n's life.
in the wider sociological literature the temi "legitimation' is used to denote
the processes through which authority is made credible. In the present
context the term retains these associations, but in a much more focused
manner, pointing to the individual's attempt to maintain a sense of
personal integrity, and reduce the threat to social status, in the face of
radically altered circumstances.
Robinsctn (1988) reports lor example, that people may use the diagnosis
of multiple sclerosis to overcome the feelings of being regarded as
depressive or mentally ill. A diagnosis may represent an official validation
of the condition. Yet, it is also clear that knowledge about the disease
does not guarantee success ui trying to legitimate change, and may
continue to elash with others' perceptions in everyday settmgs. Personal
goals tiiay also differ eonsiderabty from medical ones even in the health
eare setting, when doctor and patient are ostensibly communicating about
the same problem. Sufferers may disagree about the significance of
symptoms, for example by being resistant to the permanent use of a
wheelchair long after the appropriate point on the 'medical trajectorv' has
been reached (Robinson 1990, see also Zola 1MS2). Here, again,
negotiations will be necessary, in order to produce stabiliiy.
The visibility of symptoms has long been noted as important m this
context. The disjunction beiweeii 'definitions tif the situation' held by self
and others may be sharp in conditions where physical deterioration or
impairment is becoming obvious, but where no explanation can be offered.
Other conditions, however, itiay produce sympt<tnis. which because of
their widespread occurrence in milder forms, among the normal i^xipulation.
make legitimation extremely difficult. In a recent study of chronic
obstructive airways disease (COAD) Williams has underlined the specific
problems of conditions which are neither of great medical interest or
widely publically reci^gniscd. The image of a whee/ing, coughing, yet not
apparently disabled older man elicits little sympathy or understanding,
particularly if it is thought to be self-induced (for example, as the result of
smoking). The various categories and labels linked to the eondition do
little to establish legitimacy among others. Whilst a respiratory condition
such as cystic fibrosis, occurring earher in the lite course, has hecotne the
centre of considerable scientific, medical and public concern, sufferers
from COAD continue to suffer in silence (S, Williams I99ff, S. Wiiliant, &.
Bury 1989a). The c(tntinuing moral dimension of beliefs and practices
surrounding different health states is thus underlined (Blaxter 1990).
One other issue ought to be mentioned in this connection. The problems
 TIR' soemlogv of chronic illness 457

of legilimation may not ttnl\ be a feature o i symptoms and their perception

by self and others, but the\ may also arise front longer-term consequences
oi eonditions occurring long after onset. For example Kellv (19S9) and
Macdonald (1988) show in their studies of ulecrative colitis and cancer.
that 'minor medieal matters' that arise irom treatment, even when
sueeessful, pose particular dilliculties fi"ir communicaiion. For example, if
surgery has been suecessfuL doctors ma\ be relativeK uninterested in the
problems of sfoma care, minor sknt ilistHxIeis and ihe like which arise after
the event. Patients may have considerable difficuhy establishing thaf these
are significant, or causes for concern, in both formal and informal social
settings. A new "crisis of credibility" may (teeur if the individual continues
to repon problems after their "share' of attention has been used up. or
when they have been placed m a category (eg 'siicccsslul «tperation') which
closes off avenues of support and informatitm. Under these circumstances
ihe improved situation niav m lact be as diflicuh to manage as when
dealing with Ihe condition itscif. At tiic same time, such studies underline
the point thaf medical advice and informafion. when it is tailored to the
particular •e(tntiguration' of the individual's condition and treaiment. may
play a positive role in the legitimatifui of the conditKin in everyday life
(Burv 1988).

Iht' impact of treatmenl rt-giniens

The issue oi treatment, and its place m the experience of chronic illness,
has only recently begun lo receive the atteniion it dcsetves. though Strauss
and (ilaser (1975) drew attention to it in their earlier w<irk, (jcrhardt
(1990) has made the point that new and effeetive lorms of treatment have
transformed the medical selfing with respect lo chronic conditions,
cxpaitding the role of medicine to alfecl fhe qualitv of life as well as elinical
outeomes. F^peelations ol medieine can ihus be raisetL paraiioxieailv. in a
context which is often perceived as one where medicine is often of only
limited effectiveness. In fact, the expansion of treatment m a wide number
of areas may be associated with the reduction <if fatal outcomes and the
increase in ihe prevalence of chronic illness. Patient's searching for a stable
set of meanings which teeoncile thcir specific experience of illness with the
general eourse of the disease ean lead them into 'a medical merry-go-
round' (Robinson I98S: 2199, ,li>bl!ni: 1988) as they search tor information
and treatment that make sense, Onee on the inerry-go-iound, expectations
of what ean be offered to alleviate symptoms ma\ rise and iail.
In Comaioff and Maguire's (l<>8i) studv of childhood leukemia, for
example, (he promise of nuHlern scientifie advaitces in understanding the
disease. understandabK raised parents' hopes. Rather than sec the
condition as inexctrablv piogiessivc and fatal, a picture ol relapse and
4^K Michael Bury
remission emerges. Parents therefore inform themselves about treatments
and their possible cffeets, and place eonsiderable hope in specialist care.
However, modern treatments may still be limited m whaf they can achieve
in altering the fundatnental course of the disease, and may cause in their
wake unpleasant side effects, leading to a new set of problems, to which
responses have to be fashioned. Parents may go back over their
experiences, feeling that indecisiveness, poor communication and lack ot
information, especially by the general practitioner at an earlier stage, are
to blame. Mope and frustration alternate. Interactions with fellow parents
are equally risky, as these may reveal the character of different trajectories
individual children are following. Comparisons with others may be a
source of comfort, but they may also be a source of worry if the resulting
contrasts in managing the effects of treatment regmiens prove unfavourable.
More positively, in a condition stich as multiple sclerosis, or arthritis,
considerable initial difficulties in communicating about symptoms and their
implications may diminish when the merry-go-round slows down, fhe
ritual of consultation, of the individual often repeating versions of their
story to different doctors, may be accompanied by a growing confidence
about the nature of the condition and its treatment. Patients may become
expert, for example, about the drug therapies on offer. Whilst, say,
steroids, or anti-intlammatory drugs offer the possibility of reducing the
length and severity of altacks of MS, or rheumatoid arthritis, patients
become knowledgeable, not only about their immediate effects but also
about the differing medical views of their long-term usage. Patients weigh
up in their own minds, as do doctors, from a medical viewpoint, the costs
and benefits of such treatments. Both participants may have difficulty at
any one time knowing what the effects really arc, but patients may pursue a
'careful pattern of experimentation" and eome to isolate what they think
are the actual benefits of treatment (Robinson 1988: 86, Scambler 1989:
35).
It is clear, from a number of studies, that expectations of treatment
change at different points in an illness trajectory. For example. In a study
of patient views of chronic low back pain and its treatment, groups of
sufferers were identitied at different stages of their biography and patient
'career', with different views of what they expected and wanted from a
specialist clinic (Fit/patrick et id 19S7). Though many of the respondents
had long been travelling on the medical merry-go-round, they had different
outlooks on what they wanted. Younger patients with milder levels of
disability were looking for a more instrumental' style of intervention, and
for information about tests and treatments. Older, more severely affected
patients, on the other hand, were more concerned to communicate with
the doctor about their personal and family circumstances, and the wider
impact of their condition.
Whatever the combination of instrumental and affective needs the
person may have, making sense of the effects of treatment and medical
 '1 he socioU>|.;\ ot chritnic illness 459

adviee may not always he a straightforward matter. As indicated, costs and

henelits cannot always be simply and rationally assessed. As ,Iobling points
out in his insightful essay on the treatment of psoriasis [ I9S8) "the process
of making sense of treatment may be at times as much a matter of intuition
as much as intellect' (p 229). In his study, ,lobling illustrates that ireatments
may become a part of the problem as well as the solution, and may place an
added burden on the individual and family, .lobling argues that the effects
of living with treatments as well as with the psoriasis are ignored or ill
understood by many dcrmatologisis. As a sufferer huiiself, Jobling found
that doctors "showed tiltle interest in the complexities of the process . . .
the psychological and social consctjucnces of living with a potentially
stigmatising condition seemed beyond their protessional concern' (Jobling
1990). A sense of "disgrace' or "punishment' associatcil with the condition,
may be heightened by the use ot ointment-basetl trealments, many of
which demand arduous etfort In the patient without any clear-cut rewards.
Patients are often caught Jn what Jobling (19S8) calls the "sysyphus
syndrome'. Like Sysyphus who was condcnincil hv the gods to roll a
boulder up to the top of the hill, only to see it roll back down again, so
patients ijo through many rituals of treatment regimens, onl\ to find that
the condition has changetl very litilc. Periods in hospital may involve
considerable physical "work' ot this kind accompanied by considerable
emotional 'work' arountl their condition. In many cases patients come to
ask over time "what does it all mean'.'" rather than 'why me'.'", and tind that
doctors' comments require careful decoding, frequcntiy. patients will use
nurses m order to try lo work i)ut \vhat the latest change or development of
treatment engineered by dt)ctors means, 'fhus, recourse to the clinic or
hospital involves both instrumental and affective "work' by patients
(Strauss et ul 1982a,b). fhe implications of these aspects of chronic illness
for the organisation of liospital treatment have onlv just begun to be
considered in any depth (Strauss and C'orbin 1988, Field hW^J).
I-"rom this viewpoint the traditional medical beliet in "rational" com-
munication of information and coinpliance in following treatment regimens
needs re-thinking. F'.videncc tioni many studies of chronic illness. Including
most of those cited above, show how far patients are torccd to make
decisions about iheir treatments in terms of the social impact they have on
daily life, and hmited medical knowledge, 'fhe trade-otf between, for
example, adhering to a regimen for controlling diabetes, by controlling
weight, may clash not only with other goals held by the patient (for
example the desire to remain sociable) but also with social and cultural
pressures from without (Kelleher 1988). Similarly, recixicihng the need for
rest with the desire to remain active or at work, in living with arthritis, may
set up considerable conflicts about what should be said and to whom and
what dictates should be complied with (Locker 19H3, ( i . Williams and
Wood 1988),
Indeed, ihe term "compiiance' is of limited use m the context of chronic
460 Michael Burv
illness. As we have seen, neither the doctor or the patient has complete
knowledge or answers, whereas "compliance" suggests that an objective is
clear and can be met if the patient does what the doctor orders. Rather, as
Robinson suggests, the situation in ehromc illness is such that 'a pooling of
their respective and complementary expertise may facilitate the achievement
of some of their goals' (Robinson 1988. 84-5). Negotiatmg over the
appropriate use and effeets of treatment regimens as well as the
siiinilicance of symptoms enhances adaptation to a disrupted biography, or
at least achieving a measure of stability.

Adapting to chronic illness: coping, strategy and style

Recent sociological work on chronic illness has done more than simply
document the problems of uncertainty, doctor-patient conflicts and
difticulties in managing symptoms and their treatment. Important though
these issues are, an interpretive approach to illness brings Into view changes
over time and the positive actions people adopt to counter fhe effects of
symptoms and treatment, fhough firmly wedded to a person oriented
approaeh, this approach also recognises the range of resources drawn upon
in ad.iptation. including medical resources, in order to improve the quality
of life.
In considering long term adaptation to chronic illness, i would like to
suggest that the terms "copinii*. 'strategy' and 'style' be distinguished more
dearly, at least for analytic purposes, even though they may be illfficult to
distinguish empirically, "fhe problem is that these terms are sometimes
used synonymously, and at other times they are used In a combined form.
For example, "coping' may be used to refer to the overall process of
adaptation, or as a way of describing particular practices, as in "coping
strategies'. Whilst this overlap ui usage is perhaps Inevitable. I would like
to suggest that the terms be used, where possible, to direct our attention to
different dimensions <if experience.
"Coping', as it is used in the chronic illness literature, refers (or, perhaps,
should be restricted to refer) lo the cognitive processes whereby the
individual learns how to lolerate or put up with the effects of illness.
"Copitig', in the sense of maintaining a feeling of personal worth and a
"sense of coherence' in the face of disruption, has been seen to be an
important buffer against the stress i^f chtonic illness (Cierhardt 1989: 286).
fhis psychological dimensitm has been conceptualised by Ben-Sira (1985),
following Antonovsky (1979) as a sense of "potency". A 'sense of
coherence" and "potency' refer to a feeling of confidence that the "internal
and external environments' arc predictable ('fotman 1990: L51).
"Normalisation", from this viewpoint a form of coping, may refer to the
psychological "bracketing oft" of the Impact of the illness, so that its effects
on fhe person's identity remain relatively slight. On the other hand
 fhe socu'k^gy ot chronic illness 461

"normalisation' may also mean trcatmg the illtiess. or treatment regimen,

as 'normal", and incorporating it more fully into the person's identity and
publie self (Kelleher 1988). Predictability in the relationship between self
and others may therefore be enhanced. Kelly (1989) reports different ways
of coping with ulcerative colitis and the effects ot an ileostomw along these
lines.
Similarly, Schneider and Conrad (1981. 1983) document the 'interpretive
procedures' adopted to minimise the disruption of epilcj'^tic seizures.
Building on their distinction between 'adjusted' and 'unadjusted' modes of
adaptation, Scamhier (19S8) discusses the various methods of coping found
in his siudy of epilepsy. Where seizures are frequent the need to
communieate and have the condition recognised within the family may give
the condition particular salience, but vvherc seizures are inlre(]uent or can
be hidden from view there is less need to communicate wiih others, and
thus the condition can play a far less important role in disrupting the
person's identity, Jn sum, coping itivolves maintaining a sense of value and
meaning in life, in spite ot symptoms and their effects.
'Various factors may be adduced to explain these variations in coping, for
example the impact of social class position in producing considerable
advantage in COAD (Williams and iiury 1'-I89b), or gender In denial and
normalisation in diabetes, where women may be rrmre likely to suffer
anxiety in managing their condition, as a result of worrv (Kelleher 1988b:
152). Interestingly, howe\er. Kelleher reports elsewhere that male values
surrounding health may have more negative effects in other aspects of
managing diabetes (Kelleher 1988: 65). In addition, (>f course, the severity
and nature of symptoms, as well as ihe values held by the individual and
the resp(tnses of others, help deicrmlne whaf it is that people must cope
with. Kelly's study of colitis has shown that coping can often comprise a
complex mixture of individual \alues, outlook antl s(icia! citcumstance
(Kelly 1989).
The term "strategy', m contrast to 'c(*ping', directs attention t<-) the
actions people take, or what people do in the face o\ illness, ralher than the
attitudes people develop 'fhe term strategy, as recent debate following an
initial paper by Crow (1984) has shown, may ho used at ditfcrent levels of
analysis, from that of the military and the state, down to day-lo-day
interactions. Indeed, whilst some commentators (eg Shaw i9">0. Knight
and Morgan I99t)) oppose the extension o\ the term "strategy* from military
and corporate spheres to mundane activities, thev do so recognising its
wider usage. Cioffman popularisetl the term "strategic interaction', to refer
to features of everyday encounters (Ciol'fman 1970). and medical sociologists
have already been influenced b\ this approach In analysing mctlicai settings
(Tuckctt 1976, Strong 1979),
Part of the concern about ihc overuse of the term is its tendency to
Impute rational calculation to actions Ihat may not lia\e clear goals. With
respect to chronic illness. ! suggest that "strategy' he used to refer to the
462 Michael Bury
actions taken to mobilise resources and maximise favourable outcomes. In
defence of the use of the term, responses to the disruptive effects of
chronic illness may bring about a greater degree of consciousness and
calculation in everyday life, whether at home or at work, than is normally
experienced. The use of 'strategy' or "strategic management', in this
context, might he preferable to the rather ctinfusing use of such terms as
"coping strategies' or "social coping' to be found In the literature.
Ihc strategic management of Illness, from the person's viewpoint, means
not only the skilful manipulation of social settings and appearances to
minimise the impact of Illness on interaction (Wiener 1975) but also the
attempt to mobilise resources to advantage (Locker 1983), and fhe setting
of realistic goals In order to maintain everyday life, fhe use of the term
'strategy' suggests the need for a dynamic view of choice and constraint, as
people attempt to weigh up alternative forms of action. However, a
perspective which emphasises that choices are made within material and
cultural contexts can sometimes miss the point that contexts themselves
might partly be chosen (Crow 1989). People may withdraw from some
wider activities and social commitments, in order to concentrate on
maintaining the viability of key relationships, for example, in the home.
This last point is important when one recognises the importance of
changes over time. Strategics ma\ be akercd, involving shifts in the way in
which people interact with others, together with changes in c<intexts.
Morgan (1989), for example, has explored in some detail the relationship
between social support and disability antl shown that the search for
emotional support in the early stages of a condition gives way to the
mobilisation of a wider and perhaps kxtscr network as time passes.
Crucially, "support' here means the ability to confide in (Uhers, suggesting,
as Cierhardt (1989) has argued, that language and communication are
major ingredients in adaptation. In fact, Morgan demonstrates that the
inability tit mobilise such support may lead to deterioratit>n in the
individual's condition, leading to further social isolation. More positively,
attention to the strategic management of chronic illness involves tloeu-
menting successful acti<His to maintain hope and a sense of the future,
including the use of a wide range of possible resources such as church and
self-help groups (Robinson 1988). 'fhe latter may also be important in
providing a forum for "personal talk' as well as practical advice (Kelleher
1990).
Finally, the use of the term "style', in the context of chronic illness refers
to (he vv«y people respond to, and present. Important features of their
illnesses or treatment regimens, "fhis involves considering the "cultural
repetoires' that people can draw upon and fashion in presenting their
altered physical appearanees and social circumstances. Whilst this relates
closely to processes of coping and strategic action, it differs in the
important respect that It hrlngs into focus variations in symbolic meanings,
and social practices within different segments of the eultural order.
 The soci(>loi;\ oi chronic illness 463

The use ot the term "style' in managing chronic illness h;is been given
particular attention recently by Radley (1988, 1489) in his study of chronic
heart disease, Ditlerent forms ot s<Kial practice and cummunieution aboul
symptoms and their effects are distinguished by contrastmg "accomodation"
and "active-tleniai" styles. 'Accoinodation' occurs where roles are more
llexihle and where choiees about how symptoms are to be presented can be
developed through "elaborated* communieation wiih others. "Active-
denial" strategies involve the adoption of a style where ilhiess is opposed
'through inereased engagement in everyday aetivities'. and where eom-
munication is more 'restricted" in eharacter. Following Bourdieu (1984),
Radiey shows thai such difterenees in style are embedded in discourses
ahoul the body and self. Middle-elass values towards the body and health
may be expressed in more abstract terms, particularly aboul the self, as a
means of eommunicating social distance or •distinction' from instrumental
roles, whereas working class accounts may stress more practical values in
terms of being able to carry out tasks and roles, though the dangers of a
reductionist approach to style, class anti coinnumicalion is ree<ignisecl- The
importance of attention to the question of style lies in its suggestion that
"adjustment to chronic illness is ntit atiaptive in principle, in the sense that
it rest(ires an equilibrium or status qu<)\ but an "ongoing discourse and a set
of related practlees" (Radley 1989: 24K).
This approach let chronic iMness may help, in partieular. to evaluate
those studies which give particular emphasis !o the role of narratives in
people's responses and acc(Hints. The narratives and persitnal stories in
studies sueh as those of Williams (19S4) and Robinson {1990), may
therefore be seen in the light oi the links between soeial eiass. soeial
praeliees and style. The willingness to provide elaborate narratives may be
part of a speeifically middle class (and, perhaps, relatively youthful) style
of discourse, and a relleetion of lhe socially patterned character of
repetoires. The differentia! ability (and desire) to "tlisctnirse on health" may
itself be an important limitation to lhe view thai sufferers act in a uniformly
rational manner (Young I')S1).

I'onclusion

The results of recent interpretive sociological studies ol" chninic illness

suggest the need for a mullidimensii>nal view of its iinpaei on every day
life.' Not (miy is a biomecliea! model of disease inaciequate on its ctwn, but
so, too, are one-dimensional soeioiogieal models whieh emphasise isolation,
stigma, or lhe "master status" of illness and disabilil\ labels. Though these
features may be dominant in s(»nie individuals' experiences, researeh has
shown considerable diversity in the ways in which people aetively attempt
lo mitigate biographical disruption anil enhance adaptation. In Geertz'
terms, the research task involves taking 'experience-near" etincepts and
464 Michael Bury
placing them in 'inuminating conncciion with experience-distant concepts"
(Geertz i9S_i: 58). It is with this mm thai 1 have employed terms sueh as
biographical disruptmn and legitimation, and distinguished between
eoping, siratcgy and styie.
Future research will nol only need, however, to pursue greater
eonceptuai eonsistency and methodologieal rigour. It will also h;ive to
taekic the eharge. often levelled againsi Ihe interpretive approaeh, that it
eoneenlrates too much on meanings, and not enough on wider slruetural
factors. Concentrating on the positive achons people take, need not he
eounterposed to e(.)nsidering the inipael of the soeia! position and resources
of the individual on ehronic illness.
The need to consider the wider context is important at a time of rapid
change in the health held. For example, ehanges in the eulture surrounding
health, may have important implications for our understanding- As Blaxter
{1990) has recently pomted out the eurrent emphasis on 'healtliy lifestyles'
may have a negative effeet in chronic illness, where symptoms ean limit
their adoption. While such changes ni the eultural eiimate may be
attractive t<i some groups and individuals, they may be new sources ot
concern to tithers (Anderson and Bury I9S8: 250-352)-
Similarly, ideological features of the health-care scene need to he taken
into account, at a time when Conservative governments, in Britain al least,
have been Inikmg a •business-like" approach to health care, with
eonsunierism and an enhanced role lor eharities. The long standing role of
eharitics and self-help groups in the chronic illness field has now been
overtaken by a proliferation of ccmsumer groups, campaigning organisations
and information systems, baseti on new teehnologieai deveUtpnients and
link-ups, espeeially with the media, as well as an increase in litigation
(Annandaie 1989. Gahc and Bury l W l ) . The character <if self-help groups
in chronie illness (and the contradietions they contain) has on\\ just begun
to receive systematic sitcioictgical attention (G. Williams 19S9, Kelieher
1990).
How far such developments represent a positive ehallenge to professional
(espeeially medical) power, and what effects sueh ehanges might have on
adaptation in chronic illness is open to question. In particular, it is
necessary to ask whether these ehanges wil! benefit the articulate and
better-off at the expense of those in more marginal groupings, or whether
they will provide a generally more "enabling" context for responding and
adapting to illness. At the least, it is important that future si>eiol(tgical
work in ehronic illness recognise and assess the impaci <if these ehanges.
particularly wilh respect lo the interaction between individual experience
and soeial position. If it dties. il may go some way towarils reeoneiling
interpretive and slructural approaches.
Royal HolloH-av and Bedford New College
Univer.siiv of London
 fhe sdcioluiivof chiniiic illness 4fi5

Acknowledgement

I would particularly like io fhank Jon (-.ihc tor hi^ lidptu! <ommcnls in the
preparation of this paper.

Note

1 I have, in this p.ipci. focused .iltcntu.n on inlcipiclUi.' icscaich tindinys using

quahtalivc methods, tl should he n.Ucd. however, thai m.uiv ot ihc studies drawn
upon eoinbinc q u a l i l a t n e <ind quanhUitivc methods, and ihal quanlitativc SURSICS
aie also cvploring the niulti-dmieiisional nature ot chK>nu' tllness (eg Newman el
al

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