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

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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 caregivers. 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 misunderstood 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-goround' (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" communication 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

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"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 tloeumenting 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 vvy 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. "Activedenial" strategies involve the adoption of a style where ilhiess is opposed 'through inereased engagement in everyday aetivities'. and where eommunication 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

References Anderson, K and lUny. M. (eds! ( I')^S) l.nmg IV H/; Chn>mc Illness. I'he Experience ol Patients and 'I'heir l-amilics. Loiuloir f'nwin IKnian AnnanJaie. h. (", ( I ' W ) i he nialpiaciice crisis and the doetiir-palient rclaUonslup, S o c i < d o g y of H e a l t h a n d l U n e w . 1 1 , 1 2 3 . Aiit.Miovskv, A (i''7M) Health Stre\s and (opmg. Loiuioir l.^ssc\ Bass. lien-Sira. / . (IW;^) P o t c n c \ ' a strcss-huftcrinii link m the eo|>ing-strcss-(.iiscase relationship. Soi\al Sciemc and Mrdninc 2 1 , .V(7 4(lf> B e r g e i . 1'.. Bcrper, B . and Kellnei. I f ( ! ' n 4 ) Ihc Homeless Mmd. H a i m o n d s -

worth: Tenguin BUixler. M (1^761 the Meaning of l>isahtlit\. London. Heuietiuinn Blaxtei , M. ll'''->'l) Health atul Ijii'Mvic London- Roullcdge. B o u r d i c u . P. (i'>M) Dtsumtmn. a Social C'ltujiu- of 'he liulx^cmcnt of laste. London: Koutlcdge and Kegan Paul. Bury. M. k. (!9S2Khronic illness :,s hiomapiiicaUiisri(piion, >.'< i^'A'.^v o/ Health anil Illness, 4, l(v- S2. Biuv, M. R. (P'SS) Mcannies at risk llic experience o| arUirilis. in Anders,.n A\U\ Burv (P)<S8). C h a r m a / , K IP-W3) Loss ot self: a futidamental form ot snileinu: ni the chornicallv ili, SoiioloKV l Health and tlhu-ss. >.. \t'S 9^. ConuiroiL .f and Matjnnc, P, ( L ' S l ) Amhiguitv .uu\ the s.arcii tor nicanin<;: childhood icukenna in the m o d e m chnical context. Soaul .Snaice ami Meihcme. l>b. n 5 - 2 . v Corbni, .L M. and Strauss. A. (l''HS) (^nendmg Work ami i arc Managing (. hnmu Illness At Home. San francisco jm\ 1 ondon- .lossc\ f5ass (r.>w. ( . . (P)K')) 1"he use of the concept of M i a l e e v ' in tcccnl socioloijicai hUTdluic. Sociolo^\. 1^, 1 24 [ardlcv, A. ( i W S i Looseanii; (he honds ot eancer' tKn\ teasihle,' Disability .Studies. W. I \'> 22 Field. I) (19K^)) Siosing the Dying Loudoir laMstoek Roiiiledue International

4f)(t

Michael Bury

Fitzp;ilnck. R.. Bury. M. R.. Friink. A. O. and Donncity, T. (I')X7) Pn)blcms in the assessment of oulcumc in ;! back pain elinic, international i')i.sahility Studies, y, 161-^, (Jabe, J. and Bury. M, R. (1991) Tninquillisers and health care in crisis, Soaal
Scit'ncf ami Medicine. 3!-

Gecrtz,C. (1983) From lhe native's point of view: on the nalure of anihropotcigical understandmi;, in Local Knowled^ie: Further Essays in Interpretive Anthropohgv. New York: liasic Books, ("ierhardt. IJ. (1989) Ideas Ahout Illness: An Inti'llectual and Political Historv of Medieal Siniologv. l.oiuii^n: Macmillan. C.erhardl. [L (i9')(i) Intrtuluetory csNay: qualitalivc- research in chronic illness: the issue and the story. Social .Science and Mcdieuw. 30. 1149 -59 (iofiman, I:. (l')70) Strategic interaction Oxford: Basil Blackwell. Jobling, R, {i'JSSi The cxjicricnce oi psoriasis under treatment, in Anderson and Bury (M)X8). Jobling, R. (1940) When treatment is part of the pain. The Independent on Sunday. 27th May 1940. Kelleher. D. (I'^SSaj Coming to terms wiih diabetes: coping strategies and n<^iicompliance. in Anderson AIUS Bury (I'JKS). Kelleher, I). (l'AS8b) Duihetes London. Tiivtstock. Kelleher, D. (!49(!) Do sell-help groups help'.', Internutional Disability Studies 12,
(i() - 9.

Kelly, M. P. (1486) The sub|ee(ive experience of chronic disease: some implications for the iniinagemeiit of uicerative colitis, J. Chronic Diseusv >9 653-66. Kelly. M. 1*. (l')S9) Coping with major surgery: long and shorl-terrn consequences of acquiring an ileostomy. paper to the Annual Conference of Ihe Medical Si'eiotoi;y (iroup of the British Sociologieal Association, Manchester, U.K. Knighf, D, and Morgan, Ci. (1440) The concept of strategy in stieiology: a note of dissent. Soeinlojiw 24. 475--N3. Loeker, D. (U)<S3) Disahilitv and Disadvantagf: Tlw Conset/aencfs of Chronic Illness. LoiKion: Tavisiock MacDonakl, L. (I48S) The experience oi stigma: living with rectal cancer, in Anderson and Btiry (14XS). Martin..!.. Mcll/er. H.. and i-.lhot. i). (19SS) The Prcvalenee of Disahilitx amorigsi Adults. London: HMSO. Morgan, J. (I'iSS) Living with renal taiture on haemodiaiysis. in Andersi>n and Biirv (1488). Morgan. M. (i9S4) Social ties, support and well being, in D. L. F*atrick and I I , Peaeh (eds) Disahlemcnt in tin- Community. Oxford: OUP. Newman, S.. I'il/patrick, R.. Lamb, R and Shipley. M. {1489) 'Vhe origins of depressed mood in rheumatoid arthritis, y. Rhcumatoh>i!,y. 16. 740 4. Kadley. A. 1I4SS) Prospects of Heart Surgerv: I'sycholoi^ical Adjustment to Coronary Bypass (iraftini;. New York: Spiinger-Vcrlai;. Kadley. A. (14X9) Style, discourse and constrainl in adjustment to chronic illness, So(ioloi;v "f Heahh and lilne.ss. ! 1, 23! 52. Robinson. 1. (i48S) Multiple Sclerosis. I ondon: Routiedge. Robinson. I. 0490) Personal narratives, social careers and medical courses:

l h e socioioijv of chronic illness

467

analysing life strategies in aulobiograpliies o[ people u i t h uuiltiplc selert>sis.

Soeiai Si-H'u<r and McdicifW. 30, 1173 86, Rosenberg. C. F. (M84) Disease in history: (ranies and fraincrs. Milhank Quarierlw 67, Suppl. K I 15. Sahlins. M (!985) hlaud of !lisi(w\. Chicago: L'Tiivcrsitv of Chicago Press Scambler. (i. (1M89) Lpilepsi. LoruiiMi. Routletige. Scanihler, C), and Hopkins. A (IWO) (leneiatuig a mode! ot epileptic stigma: the role of qualitative analysis, Soiial .Seieiur and Meilicini'. 3i). I I,s7-')4, Schneider, J, anti Conrad. I', (1981) Medical and sociiilogical typologies' the ease ot epilepsy. Soiial Scierxe and Mrihane. I5A. 21 1 2\''. Schneider. J. and Cinirad. P (1483) Haxini- i.pilepsx: the i'.xpenence and Control of Illness. Philadelphia: Tempk- University Press. Secretary of State tor He^illh (I'W)) W'orkui}!, lor I'atienis London: IIMSO. Shaw, M. (1940) Strategy and sooal piocess: military context anti socioUigical analvsis. Sofioloi^v. 2-i. 46^ 7'5 Stiauss, A. and Cilaser. B (147-^. sccontl edition !'IS4) Chronn Illness ami the (Jiiahtx of Life St. I ouis. Moshy. Strauss. A. and ( o r b m . .!. VI (1488) Shaping a \ew Health Cure Svsienr lhe l-.xploration ol (hrorne Illness as a (atalysi for ChanKC- San iTiinciseo and I .ondon: Jossev Bass Strauss, A., Fagerhaugh. S , Suc/ek. B. anJ Wienei. C (]M8:.a) 1"hc work of hospitalized fiatients. Social Sciem-c and Mfdinne. !(', 477 Xd Stronsi, P. M. (1474] Ihc ( erenioniai Order ol lhe < Una. I'ureiits. l}octor\. and Medieal Bureaucracies. LoruloiT Routledgc ^ Keg;in I'^iul. Strong. P. M. (1482b) Sentimental work in the technological iiospitai, Sociolof^^x
ofllealth and Illness. 4, 254 7K Taylor, C. (1989) Sources of the Sell' The Mtikim^ ol the Modern Identity. C a m b t i d g e : ( ainiiridge UmvcrMly Press, T o t m a n , R. (144(1) Mind Stress anil Heahh. LOIKIOII. Sou^eiiii Press, T o w n s e n d , i*. (1474) /^(M(77\' in the tnited Kint;<lorii Hariuondsworth: Penguin Books. l u c k e t t . D. (147(1) Introduction lo Medical Sinioloi^x I ondiirr lavistock. West. P. ( 1940) The status and vahJilN ol act'ounts obtauied <it tnlcrview: a c'ontiast between two studies oS hunihes v\ith a disabled child, Soi ml Siience and Mediiine. 3(1. I I , 1229 34 Wiener, ( \ (1475) The hurden ot Hieuinatiud arthritis- foleialuig the uncertainty, 1 1 Strauss and (ilaser, ( 147^), 1 Williams, ( i . (1484} The genesis ol chionic illness: iiarruti\c reconstruction,
Soeiolo^\ of Health and Illness, u. 174 2(KI.

Williams. (1. (1484) Hope for fhe h u m b l e s t ' the rule oj seit-help in chrome illness: the case of ankvlosuig s[)ondvlitis, Sotioloi:v of Health and Illness. I I . 135 59. Williams, (.x and W o o d . P H. N, {I4SS) Coming to terms with chrome illness: the negotiation of a u t o n o n n in iheuniatoid arthiitis. International Disahilitv Stiuhes. 10. 128- 32, Wiiiiams, S. (l'->4()) 1 he coiiscquciK-cs oi chronic respii.ttory illness- a sociological study. Ph.[>. Thesis, Cni'-ersiU ol l.oiuloii. Williams. S. ,1. and B u r \ . M. K ( l 4 S 4 a | Inipairmeii! disainltly and haiiJicap in c h r o n i c r e s p i r a t o r v i . i i s e a s c . S o t l a l S i i c n e e a n d M e i l i c m e , 2'>. UW \fc

468

Michael Bury

Williams, S. J. and Bury, M. R. (i489b) -Breaihiaking': the conseqtiences of chronic respiratory disorder, Intcrnatianal Dtsahihtv Studies. 1 1 . 3 , 114-20. Young, A . (1981) When rational man falls sick: an inquiry into some assumptions made by medieal anthropologists, Medieine, Culture and Psxckiatrv. 5. 317- 35, Zola, I. (1982) Missing Pieces: a chronicle of living with a disability. Philadelphia: Tentple University Press.