Michael BuryThe sociology of chronic illness: a review ofresearch and prospects

Abstract This paper provides a review of research and debate in the heldof chronic illness, it lirstoutlincs some gerscral features of ast)cit>logicai approach, and then goes on to use recent empiricalstudies of chronic illness to illustrate sotnc of the main stagesinvolved. These include: onset and the problems ot explanationand legitimation, the impact of treatment, and the developmentof adaptive responses. An attempt is made todisttngutsh the useof the terms 'copmg'. 'strategy' and 'style' in describingadaptation. The paper argues that a sociological approach needsto recognise the positive actions people take, as well as theproblems they face. In this way. diversity iti managing chromeillness, and the continuing need for a person-baseti approaeh tosociological work, are underlined

Introduction

Some years ago the Anierican soeioiogist. Herberl Blumer. made thecomment, often repeated since, that sociological interest in soeial problemsfollows in the wake of soeietal definitions. What he might have added isthat sociologists also tetid to be more interested tn problems than inpeople's responses to tackling them. In the field of ehronic illness, thedoeumentation of problems faced by patients, and !i) a lesser extent theirfamilies, has usually dominated the research agenda, including sociologicalresearch, fiighlighting the hidden burden of work and social relationships(Blaxter 1976) for example, or the extent of poverty associated withdisabling illness (Townsend U?79) has. of course, been an importantcorrective to a narrow medical view preoccupied by disease and its elinical(or, at best, functional) sequelae, flowever, the emphasis on suehdiffieulties and disadvantages has been at the ex|K-nse of studying theresponses 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 theseactions. Part of this change in emphasis has ct)ftie about through thedevelopment and application of more theoretically inforiiiecl approaches tochronic illness. Interpretive soci(i!ogy, in particular, has tieveliipett a viewof people as agents, rathei than being nserely ihe products of the contextsin which they live, interaetionist and phenonienological models of illnesshave been explicated, as a tiieans of understanding belter the social basis ot"the meanings of symptoms, and the negotiated reality actors fashion inresponse to them (Gerhardt \'-W>).

Moreover, a series of empirical stutlies has emerged, more or lessexplicitly employing such approaches. Larlier disquiet about the wisdomof, or justilication Tor. sociologists studying specific medical complaints,has given way to an aceumulali

T h e s o c i o l o g ) ot chri>nic i l lness i5^

dtsruption ot illness, then going on to the processes of explanation andlegitimation, before turning to tieatment and adaj)tation.

Disrupted biographies

As is now widely recognised, the onset of chronic illness represents anassault not only on the person's physical self, but also on fhe person's senseof identity, calling into doubt the person's self-worth (Charma/ l'*83). Lossof confidence in the body leads lo loss of eontidence in socia! interaetion.More broadly, I have described this experience, of the onset of chronicillness, as "biographical disruption' (Bury 1982). hollowing Strauss andCilaser's pioneering work (Strauss and (ilaser 1475. l'IH4) Ihis idea bringsinto 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. Thenoiion of biography suggests that meaning and context in chronic illnesscannot easily be separated. 11iis may be espeeially relevant within modernculture vvith its dualistic emphasis on the 'affirmation ol ordinary life'(I 'aylor 1WJ), as well as on l i lc planning' (Bergcr ei al 1M74). Corbin andStrauss (i'*S8) speak of "iUU.."s', bit>graphical bodv conceptions, which tietogether ihe subjective evpencnee of self in daily lilc and the relationshipthis has to the body across the life course.

In a later paper (Burv I'-JHN) I distinguished two tvpes of "meaning' inchronic illness. In tlie first place the "meaning' of illness lies in itsconseipwnces for ihc individual. The effects of the t)nset of disruptivesvmptoms on everyday life at home or at work, including, ft)r example,giving time to managing symptoms or regimens (Locker 19S3) may beuppermost. Ativice about svniptoni management ntav be sfuight. togetherwith a search for information, tioni other sufferers, self help grcuips oraequaintanees. as (o fhe best methods of managing altered daily life,mobilising and compensating foi loss t)f resources, in the cailv period of aconditii)t}. practical management b \ individuals niuy be tentative anduncertain, as trade-offs between the effects of svmptoms. and efforts tominimise them, arc undertaken.

Second, the meaning of chronic illness \x\\\\ be seen in terms ot itssii^inficafice. !iy this ! mean that different conditions carry with themdifferent connotations ami iniagerv, I'hesc diftefences may have aprofound inlluenee on how individuals regard themselves, and how theytiiink others see them. ( 'hronic conditions v;iry itiai kedlv m terms o!" theirsymbolic significance within segments of the cultural order, and these arcbound to affect adaptation. Whilst these may eoale'sce into sjcreofypes (egof 'epilepfics' or "arthrihcs'), meanings surrounding illness often change asthey interact with different stages of ihe life eiunse. T!ic iminiet of suchcategories on individuals and social inleraction !iiay not always be atcfleefion of neszativc associations. Disuuisinsz and ilisclosnm diagnosis and

454 Michael Bury

symptoms, for example, depends not only on their physical intrusivenesswithin soeial contexts, buf also on their posifive and negative meaningswithin a spccifie set of social relationships, C'hanges in symptoms over timemay affect social responses, and these in turn will intluence experience.This interactive process can also be seen in the changing perceptions ofdisease in historical time; the complex interaction between disease and thesocial meanings which surround, or 'frame' it (Rosenberg 1989),

In everyday lite, chronic illness also creates what I have termed (afterSahlins 1985) a situation ot "meanings at risk'(Bury 1988). In responding tochronic illness, individuals constantly test the meanings attached to theiraltered situation against the reality of everyday experience. It is a situationof risk because mdividuals cannot be sure that their own developingperceptions 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 andcalls for sympathy run the risk of rejection. Only fhe passage oi time andtrial and error can provide guidelines as to the nature of the risks involvedin living with a patticular condition, though a degtee of unpredictabilitywill always remain. Robinson (1988) tor example, shows that patients withmultiple sclerosis report being at risk of having their symptoms misunder-stood as signs of mental illness, malingering or even being drunk by thosenot in the know. Hven with those in the know, "any claims which allowpeople social exemptions are likely to be scrutinised by others" (Robinson1988: 113).

It is understandable, from this viewpoint, that studies such as Robinson'sshould emphasise uncertainty as a key aspect of disruptive experience,especially around the emergence and onset of the condition. Symptoms ofchronic illness, in their early stages often overlap with a range of normalbehaviours, 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 beingpressed into seeking help by the growing insistence i>f symptoms, or as aresult of, or pressures from, significant others (Bury 1982. !988). in otherconditions onset might be more dramatieally disruptive, throwing extantmeanings sharply into relief. As Scamhier (1989) shows, in his study ofepilepsy. symptt)ms may appear trightemngly 'out of the blue', eausing theindividual not only to have to tace a changed situation, but also thepotentially stigmatising reactions of others. In other cases, such as renalfailure, onset may be either rapid or prolonged (J. Morgan 19K8).

These studies illustrate the range of "biographical disruption' occasionedby the onset and early development of chronic illness. Experiences are notonly intlucnced by the social context in which tlie person lives, but by thenature 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 negativeimpact of the diagnosis. Kelly, for example, calls for the physician torecognise the element of grief involved in cancer diagnosis and curativesurgery, and for communication with the patient around such feelings,Bardiey (1988} suggests that doctors should adopt a strategy of working foimpart a sense of strength U) eancer patients. !n other eonditions. such asrheumatoid 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 thusboth enable and eonstrain responses, (or example, helping some negotiationswithin the family, hindermg others. However, as a condition develops, anew set of issues to do with explanation and legitimation presentthemselves.

Explanation and legitimation

Onec the initial onset and impact of a condition have (tecurred. individualsbegin to face the longer-term implications of their altered circumstances.Information about a medieal condition may be gatherccL in terms of bothits aetiology and its progn(sis, in order to answer tlic questions of why me.why now? Frequently, of course, the answers arc less than whollysatisfactory, so that more realist or fatalist response of "well, why not me',''may ensue. Whilst medical knowledge may be important to patients intheir management of symptoms, several studies have shown that its"explanatory coverage' is often less than satisfactory. In his study ofrheumatoid arthritis Williams found that medieal explanations of thecondition may be supplemented by "narrative reconstructions" whichattempt to place such inft)rmation within a more meaningful biographicalcontext (G. Williams 1984). Following Blaxter (1976). Seambler (1989)emphasises the tendency towards rationalisation, as individuals withepilepsy try to bring into line limited medical knowledge about, andexplanations of. aetiology and their paitieular experiences, Robinson(1990) distinguishes the 'personal narratives' or stories individuals maycome to construct and communicate around their experience of ilhiess.from biomedicat knowledge about the unfolding character of the diseasefrom whieh they are sulfering. Similarly, in a study of childhood leukemia,Comaroff and Maguire (1981) found that parents went beyond theexplanations on offer within the medical eneounter (o establish a widerpicture of the condition and its possible aetiology, Hazards in theenvironment, including, most notably, the possible role of nuclear energy,have continued to figure in the lives of patients and parents living with thiscondition.

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 Eiuryby finding explanations that make sense in terms of their lite circumstancesand biographies, but they also wish to establish a proper sense ofperspective about the condition, and re-establish credibility in the face ofthe assault on scit-hood which is involved. The term 'legitimation', here,refers to the process ol attemptmg to repair disruption, and establish anacceptable and legitimate place for the condition within the pcrst)n's life.in the wider sociological literature the temi "legitimation' is used to denotethe processes through which authority is made credible. In the presentcontext the term retains these associations, but in a much more focusedmanner, pointing to the individual's attempt to maintain a sense ofpersonal integrity, and reduce the threat to social status, in the face ofradically altered circumstances.

Robinsctn (1988) reports lor example, that people may use the diagnosisof multiple sclerosis to overcome the feelings of being regarded asdepressive or mentally ill. A diagnosis may represent an official validationof the condition. Yet, it is also clear that knowledge about the diseasedoes not guarantee success ui trying to legitimate change, and maycontinue to elash with others' perceptions in everyday settmgs. Personalgoals tiiay also differ eonsiderabty from medical ones even in the healtheare setting, when doctor and patient are ostensibly communicating aboutthe same problem. Sufferers may disagree about the significance ofsymptoms, for example by being resistant to the permanent use of awheelchair long after the appropriate point on the 'medical trajectorv' hasbeen 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 thiscontext. The disjunction beiweeii 'definitions tif the situation' held by selfand others may be sharp in conditions where physical deterioration orimpairment is becoming obvious, but where no explanation can be offered.Other conditions, however, itiay produce sympt

TIR' soemlogv of chronic illness 457

of legilimation may not ttnl\ be a feature o i symptoms and their perceptionby self and others, but the\ may also arise front longer-term consequencesoi eonditions occurring long after onset. For example Kellv (19S9) andMacdonald (1988) show in their studies of ulecrative colitis and cancer.that 'minor medieal matters' that arise irom treatment, even whensueeessful, pose particular dilliculties fi"ir communicaiion. For example, ifsurgery has been suecessfuL doctors ma\ be relativeK uninterested in theproblems of sfoma care, minor sknt ilistHxIeis and ihe like which arise afterthe event. Patients may have considerable difficuhy establishing thaf theseare significant, or causes for concern, in both formal and informal socialsettings. A new "crisis of credibility" may (teeur if the individual continuesto repon problems after their "share' of attention has been used up. orwhen they have been placed m a category (eg 'siicccsslul tperation') whichcloses off avenues of support and informatitm. Under these circumstancesihe improved situation niav m lact be as diflicuh to manage as whendealing with Ihe condition itscif. At tiic same time, such studies underlinethe point thaf medical advice and informafion. when it is tailored to theparticular e(tntiguration' of the individual's condition and treaiment. mayplay 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 Straussand (ilaser (1975) drew attention to it in their earlier w

4^K Michael Bury

remission emerges. Parents therefore inform themselves about treatmentsand their possible cffeets, and place eonsiderable hope in specialist care.However, modern treatments may still be limited m whaf they can achievein altering the fundatnental course of the disease, and may cause in theirwake unpleasant side effects, leading to a new set of problems, to whichresponses have to be fashioned. Parents may go back over theirexperiences, feeling that indecisiveness, poor communication and lack otinformation, especially by the general practitioner at an earlier stage, areto blame. Mope and frustration alternate. Interactions with fellow parentsare equally risky, as these may reveal the character of different trajectoriesindividual children are following. Comparisons with others may be asource of comfort, but they may also be a source of worry if the resultingcontrasts 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 theirimplications may diminish when the merry-go-round slows down, fheritual of consultation, of the individual often repeating versions of theirstory to different doctors, may be accompanied by a growing confidenceabout the nature of the condition and its treatment. Patients may becomeexpert, for example, about the drug therapies on offer. Whilst, say,steroids, or anti-intlammatory drugs offer the possibility of reducing thelength and severity of altacks of MS, or rheumatoid arthritis, patientsbecome knowledgeable, not only about their immediate effects but alsoabout the differing medical views of their long-term usage. Patients weighup in their own minds, as do doctors, from a medical viewpoint, the costsand benefits of such treatments. Both participants may have difficulty atany one time knowing what the effects really arc, but patients may pursue a'careful pattern of experimentation" and eome to isolate what they thinkare the actual benefits of treatment (Robinson 1988: 86, Scambler 1989:35).

It is clear, from a number of studies, that expectations of treatmentchange at different points in an illness trajectory. For example. In a studyof patient views of chronic low back pain and its treatment, groups ofsufferers were identitied at different stages of their biography and patient'career', with different views of what they expected and wanted from aspecialist clinic (Fit/patrick et id 19S7). Though many of the respondentshad long been travelling on the medical merry-go-round, they had differentoutlooks on what they wanted. Younger patients with milder levels ofdisability were looking for a more instrumental' style of intervention, andfor information about tests and treatments. Older, more severely affectedpatients, on the other hand, were more concerned to communicate withthe doctor about their personal and family circumstances, and the widerimpact of their condition.

Whatever the combination of instrumental and affective needs theperson may have, making sense of the effects of treatment and medical

'1 he socioU>|.;\ ot chritnic illness 459adviee may not always he a straightforward matter. As indicated, costs andhenelits cannot always be simply and rationally assessed. As ,Iobling pointsout in his insightful essay on the treatment of psoriasis [ I9S8) "the processof making sense of treatment may be at times as much a matter of intuitionas much as intellect' (p 229). In his study, ,lobling illustrates that ireatmentsmay become a part of the problem as well as the solution, and may place anadded burden on the individual and family, .lobling argues that the effectsof living with treatments as well as with the psoriasis are ignored or illunderstood by many dcrmatologisis. As a sufferer huiiself, Jobling foundthat doctors "showed tiltle interest in the complexities of the process . . .the psychological and social consctjucnces of living with a potentiallystigmatising condition seemed beyond their protessional concern' (Jobling1990). A sense of "disgrace' or "punishment' associatcil with the condition,may be heightened by the use ot ointment-basetl trealments, many ofwhich demand arduous etfort In the patient without any clear-cut rewards.

Patients are often caught Jn what Jobling (19S8) calls the "sysyphussyndrome'. Like Sysyphus who was condcnincil hv the gods to roll aboulder up to the top of the hill, only to see it roll back down again, sopatients ijo through many rituals of treatment regimens, onl\ to find thatthe condition has changetl very litilc. Periods in hospital may involveconsiderable physical "work' ot this kind accompanied by considerableemotional 'work' arountl their condition. In many cases patients come toask over time "what does it all mean'.'" rather than 'why me'.'", and tind thatdoctors' comments require careful decoding, frequcntiy. patients will usenurses m order to try lo work i)ut \vhat the latest change or development oftreatment engineered by dt)ctors means, 'fhus, recourse to the clinic orhospital involves both instrumental and affective "work' by patients(Strauss et ul 1982a,b). fhe implications of these aspects of chronic illnessfor the organisation of liospital treatment have onlv just begun to beconsidered 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 regimensneeds re-thinking. F'.videncc tioni many studies of chronic illness. Includingmost of those cited above, show how far patients are torccd to makedecisions about iheir treatments in terms of the social impact they have ondaily life, and hmited medical knowledge, 'fhe trade-otf between, forexample, adhering to a regimen for controlling diabetes, by controllingweight, may clash not only with other goals held by the patient (forexample the desire to remain sociable) but also with social and culturalpressures from without (Kelleher 1988). Similarly, recixicihng the need forrest with the desire to remain active or at work, in living with arthritis, mayset up considerable conflicts about what should be said and to whom andwhat dictates should be complied with (Locker 19H3, ( i . Williams andWood 1988),

Indeed, ihe term "compiiance' is of limited use m the context of chronic

460 Michael Burvillness. As we have seen, neither the doctor or the patient has completeknowledge or answers, whereas "compliance" suggests that an objective isclear and can be met if the patient does what the doctor orders. Rather, asRobinson suggests, the situation in ehromc illness is such that 'a pooling oftheir respective and complementary expertise may facilitate the achievementof some of their goals' (Robinson 1988. 84-5). Negotiatmg over theappropriate use and effeets of treatment regimens as well as thesiiinilicance of symptoms enhances adaptation to a disrupted biography, orat least achieving a measure of stability.

Adapting to chronic illness: coping, strategy and style

Recent sociological work on chronic illness has done more than simplydocument the problems of uncertainty, doctor-patient conflicts anddifticulties in managing symptoms and their treatment. Important thoughthese issues are, an interpretive approach to illness brings Into view changesover time and the positive actions people adopt to counter fhe effects ofsymptoms and treatment, fhough firmly wedded to a person orientedapproaeh, this approach also recognises the range of resources drawn uponin ad.iptation. including medical resources, in order to improve the qualityof life.

In considering long term adaptation to chronic illness, i would like tosuggest that the terms "copinii*. 'strategy' and 'style' be distinguished moredearly, at least for analytic purposes, even though they may be illfficult todistinguish empirically, "fhe problem is that these terms are sometimesused synonymously, and at other times they are used In a combined form.For example, "coping' may be used to refer to the overall process ofadaptation, or as a way of describing particular practices, as in "copingstrategies'. Whilst this overlap ui usage is perhaps Inevitable. I would liketo suggest that the terms be used, where possible, to direct our attention todifferent dimensions

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 andpublie self (Kelleher 1988). Predictability in the relationship between selfand others may therefore be enhanced. Kelly (1989) reports different waysof coping with ulcerative colitis and the effects ot an ileostomw along theselines.

Similarly, Schneider and Conrad (1981. 1983) document the 'interpretiveprocedures' adopted to minimise the disruption of epilcj'^tic seizures.Building on their distinction between 'adjusted' and 'unadjusted' modes ofadaptation, Scamhier (19S8) discusses the various methods of coping foundin his siudy of epilepsy. Where seizures are frequent the need tocommunieate and have the condition recognised within the family may givethe condition particular salience, but vvherc seizures are inlre(]uent or canbe hidden from view there is less need to communicate wiih others, andthus the condition can play a far less important role in disrupting theperson's identity, Jn sum, coping itivolves maintaining a sense of value andmeaning in life, in spite ot symptoms and their effects.

'Various factors may be adduced to explain these variations in coping, forexample the impact of social class position in producing considerableadvantage in COAD (Williams and iiury 1'-I89b), or gender In denial andnormalisation in diabetes, where women may be rrmre likely to sufferanxiety in managing their condition, as a result of worrv (Kelleher 1988b:152). Interestingly, howe\er. Kelleher reports elsewhere that male valuessurrounding health may have more negative effects in other aspects ofmanaging diabetes (Kelleher 1988: 65). In addition, (>f course, the severityand nature of symptoms, as well as ihe values held by the individual andthe resp(tnses of others, help deicrmlne whaf it is that people must copewith. Kelly's study of colitis has shown that coping can often comprise acomplex mixture of individual \alues, outlook antl s(icia! citcumstance(Kelly 1989).

The term "strategy', m contrast to 'c(*ping', directs attention t

462 Michael Bury

actions taken to mobilise resources and maximise favourable outcomes. Indefence of the use of the term, responses to the disruptive effects ofchronic illness may bring about a greater degree of consciousness andcalculation in everyday life, whether at home or at work, than is normallyexperienced. The use of 'strategy' or "strategic management', in thiscontext, 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, meansnot only the skilful manipulation of social settings and appearances tominimise the impact of Illness on interaction (Wiener 1975) but also theattempt to mobilise resources to advantage (Locker 1983), and fhe settingof 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, aspeople attempt to weigh up alternative forms of action. However, aperspective which emphasises that choices are made within material andcultural contexts can sometimes miss the point that contexts themselvesmight partly be chosen (Crow 1989). People may withdraw from somewider activities and social commitments, in order to concentrate onmaintaining the viability of key relationships, for example, in the home.

This last point is important when one recognises the importance ofchanges over time. Strategics ma\ be akercd, involving shifts in the way inwhich people interact with others, together with changes in c

The soci(>loi;\ oi chronic illness 463

The use ot the term "style' in managing chronic illness h;is been givenparticular attention recently by Radley (1988, 1489) in his study of chronicheart disease, Ditlerent forms ot s

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 asbiographical disruptmn and legitimation, and distinguished betweeneoping, siratcgy and styie.

Future research will nol only need, however, to pursue greatereonceptuai eonsistency and methodologieal rigour. It will also h;ive totaekic the eharge. often levelled againsi Ihe interpretive approaeh, that iteoneenlrates too much on meanings, and not enough on wider slrueturalfactors. Concentrating on the positive achons people take, need not heeounterposed to e(.)nsidering the inipael of the soeia! position and resourcesof the individual on ehronic illness.

The need to consider the wider context is important at a time of rapidchange in the health held. For example, ehanges in the eulture surroundinghealth, 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 limittheir adoption. While such changes ni the eultural eiimate may beattractive t

fhe sdcioluiivof chiniiic illness 4fi5

Acknowledgement

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