Concepts of Health and Illness: Section 6.  The Social Experience of Living with Chronic Illness and Disability

Trends in the incidence of chronic illness and disability

The experience of ill-health as chronic illness is very much a feature of the late twentieth century in Britain, with the following two factors being frequently implicated in this trend :  The massive decline in mortality from infections, and the increasing percentage of the population who are elderly resulting from the increase in life expectancy. However as Bury (1997) has argued, a preoccupation with causes of mortality alone is seen as increasingly `problematic in public health circles', given that degenerative chronic disorders such as Parkinsons disease, M.S, Arthritis, HIV/Aids, and many others, have become increasingly prominent and which are all now major sources of disability. It is for this reason that the concern, certainly in public health terms, is as much with the consequences of such long-term illness as with establishing the causes.

Chronic illness and disability now affect more people than ever before, with the figures for self-reported limiting longstanding illness (see note below for DoH definition) showing a gradual increase over the last twenty years .

Chronic illness, and the disability that frequently accompanies has been found to be strongly related to social class position. A recent survey for the Department of Health (2003) showed that there is a social class gradient in the prevalence of disability from 8% in Social Class I, to 22% for men and 24% for women in Social Class IV, which then levelled out with the same rates for Social Classes IV and V. Among those with a disability, the proportion categorised as seriously disabled was also lower Social Classes I and II (about one in four) than in Social Classes IIIM, IV and V (one in three).

People from more disadvantaged social classes are more likely to experience financial, domestic and work-related difficulties as a result of their physical condition. This is because of the direct costs involved in altering the home, special dietary requirements, additional heating costs, the extra cost of using a taxi because of restricted mobility and access to public transport, employing a home help etc. Not only may people with disabilities suffer loss of income through restriction or loss of paid employment, but their partner may have to give-up their job to become a full-time `lay carer' (The 2001 census found over that over half a million people provided full-time unpaid care (20-50 hours per week).

Sociological approaches:

A sociological approach attempts to look beyond the factors associated with a biomedical understanding of chronic illness which typically focuses on the mechanics of functional limitations and activity restriction. Sociology recognises the need to assess the influence of what Anderson and Bury (1988) call 'the mundane features of daily life dictated by contemporary culture and material conditions' in the experience of chronic illness and disability'.

Until relatively recently sociology had little to say about the specific experience of chronic illness, those social aspects associated with living with an illness were largely subsumed under Parson`s (1951) conception of the `sick role'. There are many problems with the empirical application of the 'sick role' concept in that it assumed that there will be  recovery from an illness; that patients are essentially passive; and thirdly that doctors are always proactive and  decided upon a course of treatment on the basis of scientific criteria alone. The model was never able to satisfactorily explain how people with chronic conditions were able (or not) to manage both their social life and their illness.

Gerhardt (1989) identifies two distinct sociological approaches to the question of the relationship existing between personal identity and the onset of chronic illness. Firstly, what she calls a `crisis model', which is primarily though not exclusively associated with the consequences of labelling and stigma. Here, the onset of a chronic illness is seen to irreversibly change the social status of an individual. Secondly, what she call the `negotiation model', which focuses upon the emergent nature of the chronic illness experience. Living with a chronic illness is seen as representing a potential loss of self, in which the individual struggles to maintain `normality' over time, and in the face of the uncertainty associated with such degenerative and debilitating illnesses. Thus, the model emphasises 'adaptation' rather than the adoption of a 'deviant identity' as in the stigma and labelling model.

Michael Bury`s work (1988,1991;1997) has been particularly concerned with how the 'meanings' of our everyday encounters can change drastically with the onset of a chronic illness as specific aspects of the condition make themselves felt over time. The experience of living with a chronic illness and disability is also seen as having the effect of cutting across, "… the prescriptive patterns of modern social systems ' (1988:90). In other words, societal beliefs and the specific meanings attached to chronic illness and disability strongly influence the societal expectations of what an individual is able to achieve.

Bury goes on to argue that the meaning of an illness for an individual can be seen as operating at two levels:

1. in terms of the problems, social costs and consequences of the disability.

2. the (symbolic) significance or connotations that particular illnesses carries.

"These aspects of meaning in illness are important to an understanding of the strategies that people employ. In essence, the experience of chronic illness involves testing structures of support and risking meanings within the practical constraints of home and work. Relationships do not guarantee particular responses...meanings change as they are tested and altered as they are put at risk' (Bury:1988:92).

Bury goes on to describe how the experience of chronic illness leads to a loss of confidence in the body, and from this follows a loss of confidence in social interaction or self-identity, this process he terms 'biographical disruption'. This concept bringing into focus the meaning of illness for the individual, as well as the settings in which it occurs. The meanings of chronic illness are not simply personal. They are also the result of shared experiences and interactions with others, which may involve `re-negotiating' existing relationships at work and at home. The chronically ill and disabled person also needs to be able to make some sense of their condition before they can begin the process of `adjusting' to it. This can involve redefining ideas of what is `good' and `bad', such that the positive aspects of their lives are emphasized, and the negative impact of the illness lessened.

Rather than focusing on the  'problems' associated with living with a chronic illness, Bury (1991) emphasises the potential for an active coping response to chronic illness utilising Corbin and Strauss's (1991) notion of 'comeback' . This concept has two dimensions, the 'physical' which refers to the active work (as against a passive response) engaged in by the patient when undergoing medical treatment and rehabilitation, secondly the 'biographical' which is the attempt by the patient to reconnect their life prior to diagnosis with the present and future. Bury employs the term 'coping' in its relativistic sense, that is in terms of different kinds of adaptation rather than the normative use of 'successful' or 'unsuccessful' responses  to living with a chronic illness.

The work of Charmaz (2000) focuses on `uncertainty' as a defining feature of chronic illness, in its development, progression and treatment. Such `bewilderment' begins with the diagnosis of a chronic illness and the subsequent loss of what was previously a `taken-for-granted' continuity of life. The diagnosis of chronic illness produces a crises which , "throws people out of ordinary life, order becomes disorder, the controllable becomes uncontrollable, the understandable becomes unfathomable" (Charmaz:2000: 280). Such uncertainty can also be thought of in relation to three distinct questions or problems arise for many patients following their diagnosis. Firstly the problem of cause, when people ask themselves the question 'Why me and why now ?'. Secondly, with the difficulties associated with maintaining normal social functioning, associated with the question of 'What should I do now ?'. Thirdly, uncertainty about prognosis and  what the future will offer, this is associated with the question, ' What will happen to me ?'.   

Integrating the Biological and the Social in an understanding of Chronic illness

Over the past few years there has been a debate within medical sociology as to how best to acknowledge the centrality of the body for our sense of self-identity, into an understanding of the social experience of health and illness. Traditionally, sociological approaches played down the physical experience of chronic illness, which reflected the primary concern of the discipline with the interrelationship between social actors (agency) and social structures. Thus the physical manifestation of illness were seen as the concern of other disciplines i.e medicine and biology, and the body was primarily conceptualised (as in the case of phenomenology) as a 'social construction'.

Kelly and Field's (1996) work has sought to find ways to explore the nature and status of physical impairments without falling into a simplistic dichotomising of the biological and social. They have attempted to integrate the `biological and social facts' associated with the experience of chronic illness through the use of the concepts of self and identity. They adopt the position that social identity and self-conception are central to human social conduct, and that both are crucially related to the body. That 'self' they argue, whilst being clearly a different to the body, is nevertheless `experienced as one and the same thing'.

The most obvious way in which the physical body influences social life is in the way bodily appearance becomes central to social identity. They go on to argue that whilst the bodily basis of social behaviour and capacities is less obvious once an individuals social identity has been established, that nevertheless, the biological fact of bodies growing old and changing over time does inevitably impact on a persons social capacities. Kelly and Field conclude that as a chronic illness develops, the management of the associated physical problems `has to precede' coping with the disruptions to social relationships because they are the `prime focus' of the experience of chronic illness. Because of the body's centrality to an individuals self-conception and social identity, a chronic illness necessarily involves changes in self-conceptions `which are reciprocal to bodily experiences, feelings and actions' :  ' Biological facts become social facts because others respond to the person in terms of their physicality. They are also social facts for the individual because the individual sufferer is aware of, and has to take steps to cope with, that physical reality ' (Kelly and Field:1996:253).

© I Crinson 2007