Variability, the interaction with the environment and the meanings

attached to these things socially, provide a basis and background for

social capacities.

Our argument is that to be acknowledged as competent social performers

we have to be able to give the impression of some degree of control,

use and presentation of our bodies. Gagnon and Simon's remark that

'the management of bodies is also the management of meanings that are

designed to constrain and organize expectations about behaviour', made

originally about sexual conduct, applies more broadly (Gagnon and

Simon 1973). This becomes abundantly clear when our bodies let us

down. We stammer in an important meeting or blush when we make a

mistake thereby drawing attention to our uncertainty or embarrassment

and undermining our role performance (Gross and Stone 1964). One of

the important ways in which the bodies of people who are chronically ill

affect self and identity is the ways in which they may do this. More fundamentally

they may inhibit the capacity to play social roles. The body in

chronic illness is thus not just the repository of some real or socially constructed

lesion, it is also central to the social process.

© Blackwell Publishers LtdyEditorial Board 1996

Chronic Illness and the Body 247

The body and illness

There are few accounts of chronic illness which do not acknowledge that

basic to the experience of that illness is the disruption of the normal and

usually desired routines of everyday life. Some early accounts attended

only to the disruption (Lawrence 1958), while subsequently others

explored the ways in which the experience is reconstructed and rendered

meaningful by sufferers, family, friends and carers (Davis 1972, Davis

and Horobin 1977, Darling 1979, Finlayson and McEwen 1977, Voysey

1975, Anderson and Bury 1988, Radley 1993). What is usually central to

both types of approach is a concem with the coping behaviours which

people use in the face of illness (Moos and Tsu 1977). We suggest that

central to the coping task is dealing with the physical manifestations of

illness, and that coping with the physical body has to precede coping with

relationships, with disruptions and indeed with any social reconstruction

of events (Kelly 1991). At the very epicentre of the coping experience and

from which other social coping processes flow, is the management of the

physical problems which the chronic illness generates. The physical

aspects of living such as eating, bathing, or going to the toilet are the

prime focus of the experience of chronic illness, because above all else

coping with chronic illness involves coping with bodies - not just for people

who are chronically ill themselves but also for their families and

familiars (Anderson and Bury, 1988). As Parker (1993) has shown, the

intimate physical care which is often required is overlaid with symbolic

meanings which may transform relationships between husbands and

wives. In part, attacks on medical sociology from the politics of disability

movement (Morris 1993, Oliver 1990, 1994) arise precisely because medical

sociology has understated the central facts of bodily difficulties which

are entailed in illness and disability.

One of the virtues attached to using the concepts of self and identity as

a means of describing the physical and social reality of illness lies in their

usefulness in describing change. Bodies change in chronic illness. Chronic

illness also involves changes in self-conceptions which are reciprocal to

bodily experiences, feelings and actions. The person as known to themself

(Le. their self-conceptions) undergoes considerable transformation. Illness

may also involve changes in the ways in which others perceive and define

(i.e. construct the identity of) the sufferer as the illness takes hold.

However, feelings about self-conceptions and the feelings about identities

applied by others fluctuate and vary. They do not change in a coterminous,

simultaneous or deterministic way (Kelly, 1986). The problem of

meaning, which so many sociological accounts of chronic illness focus on,

is another way of looking at the tension which is generated between self

and identity in illness. This tension is well described by Goffman (1963)

in his analysis of the discrepancy between the 'virtual identities' imputed

© Blackwell Publishers Ltd/Editonal Board 1996

248 Michael P. Kelly and David Field

by others on the basis of appearance (e.g. crippled, sad and dependent)

and the individual's self-conceptions based on the 'actual identities' of

what they are able to do {e.g. wife, librarian, music buff).

Self and identity not only change in chronic illness but they also have an

enduring quality (Kelly 1992b). As an individual moves from situation to

situation, as their body changes and as their illness develops, there is still

an important sense in which they are the same person they were before

their body began to alter, albeit in a different social situation. They are

also known, at least to significant others, as the person they were before

they became ill and although some identities may change other core identities

will remain unaltered. Just as the body which is diseased is the same

body as it was pre-morbidly, so too are self and identity. Yet with the

onset of illness the body changes and self-conception changes too as the

individual objectifies themself as someone in pain and discomfort and with

a restricted range of activities. The body, which in many social situations is

a taken for granted aspect of the person, ceases to be taken for granted

once it malfunctions and becomes more prominent in the consciousness of

self and others. It has to be acknowledged as limiting or interfering with

other physical and social activities, especially in the early phases of an illness.

The important tension between continuity and change - which is the

central problematic in many sociological accounts of chronic illness - is

therefore also embraced by the concepts of self and identity.

Illness is a negotiated state which results in a change of identity when

others define the person as sick, tj^jically after consulting a physician who

legitimates their sickness, thereby constructing or confirming a new identity.

In an acute episode, like a bout of influenza or appendicitis, the label

of sickness has an existential and ontological reality for the sufferer, and

the feelings of being unwell are highly salient to self. However, this state

of affairs is recognised both by the person and by others as temporary

and neither self nor identity are fundamentally changed. The sick person

is expected to, and usually will, get better (Parsons 1951a, 1951b). In a

chronic illness however, and in disability more generally, the alterations

to self and identity are more substantial and permanent than acute illness,

although this fact may neither be recognised nor acknowledged at first.

The sick role in a Parsonian sense will not be completely relinquished but

will become transformed (Parsons 1951a, Gallagher 1976, Gerhardt 1989,

Kassebaum and Baumann 1965) and periods of being sick and living with

the problems of impaired functioning will become permanent features of

self and of publicly defined identity. Thus, the nature of the chronic illness

and its bodily consequences have to be incorporated permanently