Non - legitimate illness, embodied experience and the moral career: the case of ME/CFS

Abstract

The condition known as myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is an illness of unknown aetiology which affects over 150 000 persons in the UK. Whilst the cause of the condition is the subject of intense medical debate, the official view is that it is a form of atypical depression or somatisation disorder. This view is at odds with the views of many sufferers who claim that ME/CFS is a pathological disease that renders them severely incapacitated. Sufferers' maintain that, because their condition is regarded as a minor, psychological illness, its' severity is not recognised. Thus, rather than being granted assistance, their appeals for help are often met with accusations of malingering or hypochondriasis. This, they argue, results in significant marginalisation. In short, sufferers' state that they experience bodily change that is profound and disabling, however, their claims to be `really ill', are ignored. ME/CFS is one of a number of conditions whose meanings are contested. Other such conditions include Gulf war syndrome, repetitive strain injury, organophosphate poisoning, and multiple chemical sensitivity. These conditions are worthy of sociological study because they `make visible' the way that social definitions of illness impact on the experience of illness. The data for this thesis is derived from an empirical study of sufferers' experiences of ME/CFS. Using both qualitative and quantitative research methods, the study explores the embodied experience of ME/CFS and the illness careers of sufferers. The findings of the study are analysed in the light of the sociological literature on `the cultural expectations surrounding illness', `embodiment' and `the experience of illness'. Whilst the past literature has either focused on `the cultural expectations surrounding illness' or `the experience of illness', this thesis brings together the two areas and uncovers the complex set of relations and pathways that emerge when ideas about illness clash. The findings have implications for the sociological understanding of the illness experience. They are particularly relevant because, as the chronically ill population expands, there is an increasing emphasis on individual responsibility for illness. Thus, whilst contested illnesses are a blatant example of what happens when sufferers' are held accountable for being ill, the findings have implications for the experience of all chronic illness.