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. In the absence of any organic proof of its existence, the prevailing UK view is that it is a form of atypical depression or a somatic disorder. ME/CFS is said by sufferers to affect physical and cognitive functioning and last for years. However, many argue that because ME/CFS is seen as a psychological illness their complaints of ‘being really ill’ are not taken seriously. Based on a mixed method study of 266 persons with ME/CFS, this paper explores how individuals experience a chronic condition when their ideas about illness clash with the ideas of others. First, drawing on the findings of a quality of life study and 45 interviews, the “lived” or “embodied” experience of ME/CFS is explored. Second, the paper examines the social course of ME/CFS, in terms of the pathways that sufferers take through their illness as they seek to understand their symptoms, reconstruct order and maintain control of their disrupted lives. It is argued that sufferers of ME/CFS undergo a form of suffering and exclusion which is the consequence of 1) frequent disbelief and misunderstanding about the condition; 2) uncertainty as to the aetiology and trajectory of the illness and 3) the denial access to any form of social support. This form of suffering is experienced alongside the experience of substantial physical impairment. In addition to drawing attention to the marked disadvantage experienced by sufferers of ME/CFS, this paper highlights the moral dimension of the illness career and the ways in which individuals make sense of their conditions in the context of cultural non-legitimation.