Michael Bury

Chronic illness as biographical disruption

Abstract The paper is based on semi-structured interviews with a series ofrheumatoid arthritis patients. Chronic illness is conceptualised as aparticular type of disruptive event. This disruption highlights theresources (cognitive and material) available to individuals, modes ofexplanation for pain and suffering, continuities and discontinuitiesbetween professional and lay thought, and sources of variation inexperience.

Introduction

The purpose of this paper is to explore a limited range of theoreticaland empirical issues thrown up by the study of chronic illness. Itfocuses on a field study of rheumatoid arthritis carried out by theauthor between 1976 and 1979 in the north-west of England. The datareported here were gathered by semi-structured interviews with a seriesof thirty patients being referred, for the first time, to an outpatientrheumatology clinic. These individuals comprised twenty-five womenand five men (the disease has a four times higher prevalence amongwomen than among men). The majority of the women were agedbetween 25 and 54, two being under 24 and six being over 55 years ofage. The five men were aged between 45 and 64. Fifteen of the womenworked, either part-time or full-time. All but one were working-classwomen, with jobs such as machine operator, school kitchen worker,bakery worker and punch-card operator. All but three respondents weremarried with families, often including young children.

The selective nature of this series had a purpose. The aim was to con-centrate on those with an emerging illness at the earliest possible point,to explore the problems of recognition and changes in life situation andrelationships occasioned by the development of the illness. 1 thereforerelied on the identification of probable rheumatoid arthritis patientsby a consultant rheumatologist, based on referral letters from a generalpractitioner. In all but one case a definite diagnosis was subsequently

Sociology of Health and IUness Vol. 4 No. 2 July 1982©R.K.P. 1982 0141-9889/82/0402-0167 $1.50/1

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confirmed. The interviews were conducted once at home before attend-ing the clinic, and again after the first two consultations. In addition,observations in the clinic setting were possible, providing informalconversations with respondents and other patients.

Chronic illness as a disruptive event

At the risk of oversimplifying, two traditions have been available tomedical sociologists interested in chronic illness. The first stems fromthe debate over the usefulness or otherwise of Parsonian conceptions ofillness and the sick-role. On a negative level, it is maintained thatchronic illness appears to deny many of Parsons' assumptions about thepatterning of sickness; on a more positive note it suggests separatingand developing deviance and adaptive perspective from his theory(Gerhardt, 1979; Gallagher, 1976). This, it is hoped, will overcome thelimitations thought to arise from an overemphasis on acute illness andsick role behaviour. However, the notion of adaption is often linkedto a view of disablement as a relatively stable entity. In fact, the con-ditions which underpin most forms of disablement involve fluctuatingsymptoms and uncertain outcome. Taylor (1977) notes that in thechanging spectrum of disablement since the Second World War chronicillness has come to overshadow the contribution of accident and injury;see also Bury (1979) for a more general discussion of disablement.Whilst residual and permanent disabilities are implicated in conditionssuch as arthritis, the illness underlying them remains significant. AsMildred Blaxter (1976) has shown, medical definitions are central indisablement not only from the point of view of doctors' concerns, butalso of patients'. Whilst medical definitions may at times be seen asinappropriate in service and welfare provision, this does not displace therole of both lay and specialised medical knowledge in explaining experi-ences or of those behaviours associated with them. My study shows, forexample, that a chronically ill person can make adaptations to his life-style and still have access to periods of classic sick-role behaviour whensuch events as surgical intervention or sudden exacerbations ofsymptoms occur.

The second tradition has been of an interactionist nature. As onewould expect, this has concentrated on empirical enquiry, detailing thestrategic handling of symptoms and disabilities (Davis, 1964; Wiener,1975; Strauss, 1975). The insights gained have been important, especiallyover such matters as the disclosing and disguising of symptoms, but theapproach has often been frankly descriptive, with only passing refer-ence to wider theoretical concerns. Strauss (1975), for example.

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describes the way individuals strategically withdraw from the field ofsocial interaction under the impact of symptoms, but whilst he arguesthat this should be seen as understandable, the problematic nature ofsuch behaviour and its deeper implications are left implicit. As PaulRock (1979) has recently shown, interactionism has been preoccupiedwith fieldwork rather than explicit theorising. In particular, a willing-ness to move from descriptive categories of interaction to a wideranalysis of cultural and structural forms has been limited.

The perspective to be developed here is that of chronic illness as amajor kind of disruptive experience, or, using Giddens's (1979) term,'critical situation'. Giddens makes the point that 'we can learn a gooddeal about day-to-day situations in routine settings from analysingcircumstances in which those settings are radically disturbed' (p. 123).In his discussion he seems to have in mind disruptions of the socialfabric brought about by major events such as war. His reference toSargant's Battle for the Mind, however, suggests that biographicallylocated events such as spirit possession also have the same potential.

My contention is that illness, and especially chronic illness, is pre-cisely that kind of experience where the structures of everyday life andthe forms of knowledge which underpin them are disrupted. Chronicillness involves a recognition of the worlds of pain and suffering, pos-sibly even of death, which are normally only seen as distant possibilitiesor the plight of others. In addition, it brings individuals, their families,and wider social networks face to face with the character of theirrelationships in stark form, disrupting normal rules of reciprocity andmutual support. The growing dependency involved in chronic illness is amajor issue here. Further, the expectations and plans that individualshold for the future have to be re-examined. Thus, I want to maintainthat the development of a chronic illness like rheumatoid arthritis ismost usefully regarded as a 'critical situation', a form of biographicaldisruption, not only as a way of describing what happens, but also toprovide a more explicit analytic focus.

For the present I wish to link three aspects of disruption to theunfolding of a chronic illness. First, there is the disruption of taken-for-granted assumptions and behaviours; the breaching of common-sense boundaries. (Dingwall (1976) suggests a 'disruptive' approach toillness in this regard, but goes on to offer a formalistic rather thansubstantive analysis of its implications.) This 'what is going on here'stage involves attention to bodily states not usually brought into con-sciousness and decisions about seeking help. Second, there are moreprofound disruptions in explanatory systems normally used by people,such that a fundamental re-thinking of the person's biography andself-concept is involved. Third, there is the response to disruption

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involving the mobilisation of resources, in facing an altered situation.

Onset and the problem of recognition

It is now a sociological commonplace that lay perceptions of symptomsand the decision to seek help do not necessarily coincide with thoseheld by professionals (Wadsworth et al. 1971, Maclean 1975). No onein the study group recognised the first signs as indicating rheumatoidarthritis. In the first instance impairments (a swollen finger, earlymorning stiffness) were merely regarded as a nuisance, and were seen asa result, for example, of exertion in decorating at home. They were not,even in retrospect, seen as a warning. The only kind of explanationcalled for was of a 'proximal' kind. That is, common sense partiallyfurnished the answer, particularly in terms of the immediate externalenvironment. This orientation towards the external environment comesclose to the views of the source of ill health discussed by Herzlich(1973). But the externalising and localising of the sources of discomfortbecame more problematic as the illness unfolded.

One of the most important features of chronic illness is its insiduousonset. Non-communicable diseases do not 'break-out' they 'creep-up'.Davis (1963) indicates how the transition from trivial symptoms to adeveloping and persisting disability has an impact on those concerned.It involves the initiation into a new social arena where common-senseguidehnes are no longer sufficient. Maclean and Cockshutt (1979) andCowie (1976), in their studies of heart attacks, indicate how social andbiographical factors influence this initiation. Even in the case of heartattacks people report finding themselves in a critical situation of greatuncertainty, where they may have little or no idea of what is happeningto them.

The main feature in this instance, and somewhat in contrast withother studies, is that the emergence of rheumatoid arthritis is an experi-ence unlikely to involve others until a relatively late stage. The role ofsignificant others in recognition is limited and it is possible for some,though not all, patients to hide their symptoms or disguise their effectsfor long periods. I came to realise, in the course of interviewing, thateven having been referred to a specialist clinic (often some months afteronset), some were still hiding their illness from their family. Indeed,two women used the interview situation to help reveal to their spousesthe seriousness of their condition. Clearly, where symptoms of a con-dition coincide with those widely distributed in a population (in thiscase aches and pains) the processes of recognition and of legitimatingthe illness are particularly problematic.

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As the symptoms persisted the probability of some kind of arthritisor rheumatism suggested itself, or was suggested by others. For theyounger women it came as a profound shock to realise that arthritiscould begin at their age. Their experience contrasted sharply with thecommon cultural paradigm of the disease. A reaction of disbelief mixedwith anxiety is thus common among those with an emerging illness ofthis kind. There is rarely anything in the individual's biography whichprovides an immediate basis for recognition of the illness as illness.Many of the women had been physically active, both in the house andat work, and in sports and leisure activities. The stereotype of arthritisis so sharply contrasted with this that it seems impossible to be movingfrom one status to the other.

As one woman put it:

'Well at first 1 thought I'd broken, chipped the bone in the finger, with it being aknuckle. I thought, I bet I've banged it, really, because I do bang my hands a lotsometimes and I thought I'd chipped it and I thought, "oh it'll go ofP. It wasmonths, really, before I got round to going to the doctor because we got marriedin the July and I didn't go and see the doctor before the end of August, beginningof September. I just thought it was one of those things that would clear up. Itnever dawned on me it would end up like this.'

The significance of age requires underlining. The image of arthritis asa disease of the elderly is common. On the one hand it makes the pos-sibility of a straightforward process of recognition remote. Arthritis wasseen, initially, by those I interviewed as a 'wear and tear' disease, a con-sequence of becoming old with inevitable disabling consequences,particularly expressed in fears of seizing-up and becoming crippled.Individuals, even in their forties and fifties, did not think of arthritis asoccurring in the way experienced, and this was even more true for thewomen in their twenties. The emergence of the condition implied a'premature ageing' for the individual (Singer 1974). As such, it markeda biographical shift from a perceived normal trajectory through relativelypredictable chronological steps, to one fundamentally abnormal andinwardly damaging. The relationship of 'internal and extemal reality'was upset.

Commonsense assumptions lose their grip and yet alternative expla-nations do not readily present themselves. The individual is unsureabout whether and how to disclose the illness, both to significant othersand to outsiders, such as the general practitioner. But for those whodecide to consult a logic is set in motion, although the course of referralis rarely a smooth one. A general practitioner may well have difficultyin diagnosing early rheumatoid arthritis and send a woman home with astrapped up wrist, in a 'wait and see' exercise. Or, as in one case, a manwas simply given pain-killers and decided to consult a chiropodist for

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his painful feet. Often however, the development of more systemicsymptoms and growing disabilities insists on pursuing referral. Finally,sometimes after considerable delay, referral to the rheumatology out-patient clinic occurred.

This marked the end of the initial stage. Such referral was oftentreated with relief — suggesting as it did that the individual was 'goingto get sorted out'. The relief was, however, more than simply that ofcoping with functional problems and growing pain and discomfort. Itwas also a sign that the individual was justified in presenting theirsymptoms and that their behaviour in general was warranted. Theprospect of official recognition and treatment therefore had a range ofexpectations attached to it.

Emerging disability and the problem of uncertainty

The place of uncertainty in the experience of illness, and especiallychronic illness, is widely recognised (Davis 1960, Wiener 1975). Thisinvolves both uncertain knowledge about the impact and course of thecondition and of appropriate behaviour in the face of its effects. In thecase of rheumatoid arthritis the emergence of obvious signs of disability,as I have indicated, can become overriding. In some instances respon-dents were simply 'taken over' by the disease. One man, a manualworker in his forties, developed such severe stiffness and pain, especiallyon waking, that he could not shave or dress himself. Whilst the toler-ance of others in such a situation will be tested, the individual canelicit or try to insist on the legitimacy of his actions. But this legitimacyraises a new set of problems, involving a re-evaluation of the relation-ship between the now-visible disease and selfhood. It is in this contextthat medical knowledge takes on particular importance.

Access to medical knowledge, at least in the case of physical illness,offers an opportunity to conceptualise the disease as separate from theindividual's self. This separation of disease from human contingencieshas, in a variety of ways, come in for criticism. In recent years the ideathat disease is itself a 'reification' has been taken up by sociologists. Initself it is not a new idea, dating back at least to Virchow in nineteenthcentury Germany (Faber 1923) in his opposition to any kind of nosologybased on disease categories. Recently Taussig (1980) and others havesought to give this approach a sociological revival, drawing on the soci-ology of knowledge and theories of alienation (e.g. Berger and Luckmann1967).

But, as Fabrega and Manning (1972) have shown, the separation ofdisease from self is a powerful cultural resource. The objectivity of

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disease provides, through medical science, a socially legitimate basisboth for deviant behaviour and clinical intervention. Assertions thatscientific objectivity acts as an ideological force frequently fail toaddress this question of legitimacy. To be able to hold the disease 'at adistance', as it were, assists the claim that one is a victim of externalforces. To do anything less is to accept fully the burden of responsibility.

However, the point of the argument about reification, at least inchronic illness, is that a strict separation of disease and self (for thatmatter disease and social relationships in general) is precarious. Theexperience of the patients in this study underlined the uneasy balancewhich is struck between seeing the condition as an outside force andyet feeling its invasion of all aspects of life. Thus, patients approachedthe specialist with mixed feelings. On the one hand, they wanted defi-nite knowledge of their physical state and its causes, and yet felt,realistically, that there was a limited amount which the doctors coulddo in effecting a cure. They expected their drugs to be changed or'sorted out', but often added that the main issue was still going to belearning to live with it. Medical intervention was, therefore, regarded atthe same time as both important and limited.

On being told that they definitely had rheumatoid arthritis, reactionscombined fear and relief. Some said that, as they had known it prior toconsultation, it simply confirmed the worst; others were beset withanxiety and fear, especially about the future. The image of rheumatoidarthritis as a crippling disease is strong, and despite attempts by staff toreassure patients that only a small proportion of sufferers becomeseverely disabled, many saw a future of growing dependency andinvalidity.

Not only this, but individuals also face the limits of medical knowl-edge and treatment regimens. A realisation that the latter (involvingperiods of rest and activity) are difficult to follow and often less thaneffective slowly dawns. Doctors unwittingly reinforce this by tellingpatients that no cause of rheumatoid arthritis is known. Thus, whilstthe diagnosis of the disease provides something firm to relate to, andto explain to others, the actual nature of the disease remains elusive andthe treatments empirical.

As one woman put it:

'The doctor told me to rest as much as I could. Well, I think if you do too muchresting you stiffen up, don't you? 1 don't really understand what it's all aboutto be quite honest.... You know, because one doctor tells you one thing andone tells you another... one tells you to use your fingers like this and the othertells you to rest your hands. So you don't know where you're up to, do you?'

The realisation that medical knowledge is incomplete, and that treatment

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is based on practical trial and error, throws individuals back on theirown stock of knowledge and biographical experience. The search for amore comprehensive level of explanation, a more certain basis of copingwith the illness is often along and profound one. Comaroff and Maguire(1981), following Durkheim's views on the role of science, indicate theneed to complete knowledge gained from specialist sources; a need totie in formal knowledge with the person's total biography.

Interpretative sociology has often made play on a strict separation ofthe languages of cause and meaning. Many writers assert that there iswhat amounts to a conceptual gulf between acts of nature and humanintention. Crick (1976) has recently argued this position in developinga 'semantic anthropology'. Coulter (1973) argues it in separating theworlds of 'cells and tissues from acts and conduct', and Goffman (1975)says that our culture divides natural events from 'guided doings'. As Ihave indicated, conceptualising disease relies strongly .on this culturalmotif, but it seems to me that Giddens (1979) is also right to assert thatin lay thought cause and meaning frequently coincide.

In searching for the meaning of events, answers to the questions ^why me? why now? incidents from the past are set against presumedknowledge of the disease's causation. Patients in this study assumedthat the predisposition to rheumatoid arthritis must be inherited orcarried in the blood. The interviews often turned on questions aboutfamilial transmission, both in terms of whether the condition mighthave been inherited and whether it might be passed to offspring. Moralconcerns and scientific-based knowledge overlap. Whilst a few individ-uals firmly believed that family members had passed on the diseasedirectly, others sought to implicate emotional upset or other seriousevents in its emergence and onset. One woman patient and her sister(who also had arthritis) decided that emotional shocks were of suchimportance that their remaining brother needed protecting fromupsetting events, in order to forestall the onset of disease.

In discussing more specific events linked to the onset of her illnessanother woman, a part-time dinner lady, recounted being called to her7 year-old son's aid on arriving at the school for work. He had col-lapsed in the playground. She said:

'I went to the cloakroom and found him in a terrible state. Nobody seemed tobe doing anything so I carried him home myself. Vm not very big and it nearlykilled me. In the end the ambulance came and rushed him off to hospital.Appendicitis. He had an emergency operation and was on a drip for two days.He recovered but it was such a shock. I often put my trouble down to that time.I'm not saying it caused it only that's when things started happening.'

The woman in this interview wanted to express a number of things

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simultaneously. In the first place, she saw the possibility of a causal ortriggering effect of 'shocks to the system'. Similar views were expressedby most respondents in this study. But this woman was conveying morethan simply views about causation.

First, the meaning of the event of rheumatoid arthritis itself was seenin terms of an analogous shock to her life. Her social situation hadbeen difficult enough before onset, and it was as if the final blow hadbeen delivered. The arthritis appeared as a grossly unfair act, cheatingher out of the few hopes she retained for the future. Whilst she 'managed'or 'coped' with the disease - kept it at bay as much as possible - itcontinually intruded into her sense of self-confidence, upsetting analready precarious balance.

Secondly, and as the quotation above shows, she was also hard pressedto mobilise resources around her. She stated that she had a husbandwho worked long hours in a manual job for low wages and a marriagewhich, at the best of times, was not supportive. The illness thus meantnot only a disruption of structures of explanation and meaning but alsoof relationships and material and practical affairs. And it is to these thatI now want to turn in a little more detail.

Chronic illness and the mobilisation of resources

I have tried to show that attempts to impose meaning on threateningand seemingly arbitrary events, such as the appearance of rheumatoidarthritis, involve an examination of the constellation of familial andbiographical experiences. In addition, the individual is inevitably drawninto rearranging his or her wider personal and community involvements.The presence or absence of a supportive social network may make asignificant difference in the course of disablement, as Smith (1979) hasshown. The specification of such networks and their use in routinehealth service settings is already being attempted (Capildeo et al. 1976).The maintenance of neighbourliness and friendship, particularly in theability to reciprocate for favours or help offered is central. The avail-ability of a good friend, especially for many of the female patients inthe study being reported here, emerged as a key element in the picture.

The disruption of friendship and community involvement arises notonly because of functional limitations (for example restrictions inmobility, problems of fatigue) but also because of the embarrassmentwhich such disabilities create. Maintaining normal activities, for examplebeing able to sit in one position for a long period of time at a cinema,or maintaining normal appearances in a social gathering at a club orpub, have to become deliberately conscious activities, and thus frustrating

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and tiring. In the end the effort simply does not seem worth it. Theerstwhile taken-for-granted world of everyday life becomes a burden ofconscious and deliberate action. The simplest outing becomes a majoroccasion of planning and expedition. Thus, the handicaps of socialisolation and dependency which flow from these disruptions in socialintercourse are not simply derived from the ability or inabihty tocarry out tasks and activities. Individuals begin to restrict their terrainto local and familiar territory where they are least likely to be exposedto the gaze and questions of acquaintances and strangers (Goffman1968, Barker and Bury 1978).

As a male respondent put it:

'Now the only place I go now is down to the local club. Everybody knows mesort of thing. They might say it's a shame for him, but nobody bothers me, theyaccept me as I am. But if I go anywhere else, say, if I was to go to another clubor another pub somewhere where I am not known as a regular and I see some-body who I haven't seen for years they try to avoid you. They, people, areembarrassed. People say "bloody hell, is that. . . ? Dear me, what's the matterwith him?" And they try not to catch your eye, if you will. People tend to stayaway from you. I don't know, they just don't want to be involved. You tend todo the same then.'

As I mentioned earlier, Strauss (1975) has pointed out that withdrawalfrom social relationships and growing social isolation are major featuresof chronic illness. In the early stages of a disease one of the most diffi-cult areas of maintaining normal relationships, and mobilising resources,especially among younger sufferers, is at work. Two women with jobswhich involved the continuous use of their hands exemplified theproblems. One felt that her workmates had little sympathy and that shecould demand no special consideration. As was common among thestudy group, she was reluctant to do so anyway in case she drewunwelcome attention to herself and her work. She was under pressureto keep pace with the speed of work and she constantly worried aboutthe loss of her job.

Again, the situation is best expressed in the words of the womanherself. She said:

'We're getting all new work now from the fire stations, street reports and that.They take ages. Some of the girls just seem to whistle through them, but it takesme nearly all day to do them. She (her supervisor) wouldn't be too pleased, Iknow that far a fact. She'd say, "oh it's not worth your while working here", andall that. That's the type of thing you usually get if they know you're going tobe off ever so often. So I don't say anything and if I'm off I'm just ill. Thedoctor doesn't even put down what is wrong with me. I invent something andhe puts it on the sick note and then I say what is actually wrong with me . . . .At the moment I'm treated as an equal, which I am, I do the same amount of

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work as them. I get more or less the same money, so I think, well at least I'mkeeping my part up.'

The attempt to normalise in the face of disruption is revealed here.Departing from behaviour which is deemed appropriate carries its ownspecific disadvantages and thus is avoided as far as possible. Muchdepends on the degree of flexibility which hoth formal institutions andinformal relationships are prepared to allow. In this case such latitudeappeared to the sufferer to be minimal.

A wider set of provisions were available to the other woman. Heremployers were sympathetic and helpful. However, she too sufferedstrains from the result of her illness, though this time more directlyfrom the informal pressure of her workmates who, she stated, werereluctant to redistribute the workload in her favour. Even though shefelt that they were generally sympathetic, her frequent absences meantthat the limits of tolerance were reached. As one telephonist, among agroup, there was little room for manoeuvre, especially as the workrequired continual manual dexterity, a situation which became increas-ingly difficult as the disabling effects of the disease developed. Fventhough union/management arrangements gave her the right to be absentfor both regular hospital visits and when her disabilities and symptomswere at their worst, such explicit acceptance could not circumvent therelationship problems at work itself. The form of organisation of worktasks reduced the opportunities for adopting a strategy to disguise herdifficulties and thus reduce her handicap.

Occupation and social class are, of course, closely related althoughtheir relationship in illness is a complex matter. The importance ofsocial class for my discussion lies in the variable distribution of resourcesin society and thus the ability of individuals from different social stratato compensate for the effects of disability and thus offset economicand other handicaps. However, the picture is not always straightforward.In the study two men, a manual worker to whom I've already referred,and a small businessman, suffered the onset of severe systemic illness. Inthe short term the self employed man suffered relatively greater hard-ship, as his business was threatened and, unlike the manual worker, hecould not rely on state benefits. In the long term, however, the manualworker faced greater difficulties. The administrative definitions ofdisability bring about their own consequences as Blaxter (1976) hasshown.

For the first six months the manual worker actually found himselffinancially as well off being 'off sick' as he did when in work. This cameas something of a surprise in the early days, but on passing the sixmonths point his long-term disability benefits came into force and hefound himself facing permanent hardship. The businessman was able.

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slowly, to rearrange his work practices and significantly reduce his ownhours of work. The manual worker finally struggled back to work aftera year's absence only to find that the tasks were impossible (involvingthe re-roofing of factories and warehouses) even with considerablesupport from his workmates. This brought about a new crisis and at thepoint of a third interview with him he expressed great bitterness athaving worked so hard all his life with little to show for it in times ofadversity. Again, the 'unfairness' at having been singled out was hard tobear. Not surprisingly, the pain and discomfort of his arthritis combinedwith these worries to produce a great deal of unhappiness and depres-sion. Throughout the period of persisting disability and growing handi-caps his contact with his general practitioner had been minimal. Fromtime to time he gave his doctor a routine progress report. Of his feelingsand practical hardships he said nothing.

Discussion and concluding remarks

In describing the experience of the onset and development of rheuma-toid arthritis I have tried to suggest a perspective which conceptualiseschronic illness as a particular kind of disruptive experience. This dis-ruption throws into relief the cognitive and material resources availableto individuals. It displays the key forms which explanations of pain andsuffering in illness take in modern society, the continuity and disconti-nuity of professional and lay modes of thought and the sources ofvariability in experience arising from the influence of structural con-straints over the ability to adapt.

Under normal conditions the relationship between self and others isa precarious enterprise, characterised as it is in contemporary settingsby high degrees of self-reflection, individualism and the manipulation ofappearances (Berger et al. 1974). This precariousness is held in check bya wide range of 'cognitive packages' available to individuals and groups,each of which is more or less successful in structuring and maintainingmeaning. In so far as it is possible to identify dominant motifs, thosewhich resonate strongly with scientific and technical imperatives arelikely to be the most influential. Not surprisingly, therefore, medicalknowledge and medical practice have become central features in modernsociety. As Foucault (1973)puts it, 'In this [European] culture medicalthought is fully engaged in the philosophical status of man.'

However, knowledge and practice are not necessarily perceived in thesame light. Treatments are often empirical in character and patientsmay feel let down by the limits ofmedical intervention and technology,or indeed by a realisation of the limits ofmedical knowledge itself. But

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my study provides no ground for assuming that these problems indicateany generahsed disillusionment with medicine as a system of knowledgeand explanation.

Indeed, the reverse may be the case; criticism directed at poor com-munication by doctors, or inappropriate treatment and advice, con-trasting with the high expectations held of medicine. From this point ofview the 'medicalisation of hfe' thesis, whilst carrying an obvious faeevalidity remains sociologically naive. It is to be expected that areasof experience on the 'margins' of everyday life (Berger and Berger 1976)require elaborate symbolic expression (in my case the occurrence ofpain, suffering and other features of chronic illness as a whole) andattract attention from those institutions which codify knowledge ofthe body and mind in the practical management of personal troublesand affliction, specifically, of course, medicine and, to a lesser extent,the agencies of social welfare. The assessment of medicine's role as asymbolic system, in facilitating as well as constraining understandingand action in such situations, is jeopardised by the continuance of aone-sided portrayal of medicine's negative infiuences. The deep involve-ment of medicine in reorganising the disruptive experiences of chronicillness, in reordering its arbitrary and threatening characteristics,inevitably involves issues of social control. That medical sociologyshould seek to explore this is important, but to suggest, as some writersdo, that the experience of pain, illness, and even death can be facedwithout recourse to such codes is patently false (see, for example, therecent arguments of Illich 1975, Kennedy 1981 and Sontag 1979).

Medical conceptions of chronic organic disease and its causation arenot regarded as illegitimate 'reifications' from a lay point of view. Theyprovide an objective fixed point on a terrain of uncertainty. Theproblem, however, is that such knowledge itself often turns out to beambiguous and hmited. Rheumatoid arthritis thus appears as a definiteentity, yet its implications for the future are uncertain. Such knowledgeis incomplete and has to be supplemented by, and set against, a bodyof knowledge and meaning drawn from the individual's own biography.The search for the cause of the illness, which I have described, is at oneand the same time a search for its meaning. The separation of cause andmeaning has an important but limited place in lay thought. The ident-ification of medical thought with disease and lay thought with illnessin medical sociology seems to me over-simplified (Fisenberg 1977;Cassell 1975). A more careful treatment of the continuity and dis-continuity between lay and specialised modes of thought is called for.I wish to suggest that medicine be treated as a cultural system, as bothan important resource to people in times of distress and pain and as aconstraint in their search for the deeper meaning of experience. I

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further wish fo suggest a dual view of medicine, or rather a view of theduality of medicine, one which, following Giddens (1979), has a 'respectfor the authenticity of belief (whether doctors' or patients') whilstoffering the possibility of a 'critical evaluation of the justification ofbelief and the involvement of beliefs in the distribution of power.

Important though the place of medicine is in facilitating and con-straining the adaptation of individuals (and those with whom theylive and work) to the presence of chronic illness, this is clearly not theonly, or necessarily the most important, issue. I have also tried to showthat disruptions in biography are, at one and the same time, disruptionsof social relationships and the ability to mobilise material resources. Tobe sure, medical knowledge and lay knowledge about disease and illnessenter these fields, but it is clear that the warrantability of a person'schanged behaviour, through chronic illness, is determined by manyother factors. We know relatively little ahout the 'limits of tolerance'within families and workplaces, and how they vary between differentsocial groups and settings. The disruption of reciprocity, the problemsin legitimating changed behaviour and the overall effects of stigmaassociated with chronic illness all affect the individual's ability tomobilise resources to advantage. Conversely, the variability in resourcesbetween different social groups affect the processes mentioned here. AsIUsley (1980) has recently pointed out, the processes involved in theinteraction between wider social structures and the experiences of ill-health, within specific cultural and familial contexts, are still poorlyunderstood. The perspectives of biographical disruption and the inter-play of lay and professional modes of thought are offered here as acontribution to tackling that problem.

Department of SociologyBedford College, London

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