The experience of chronic fatigue syndrome: managing an invisible illness

© 2004 David George EvansIn this thesis I present the findings of qualitative research I undertook with people who have chronic fatigue syndrome (CFS), a mysterious illness with no organic pathology or known cause. My aim was to research CFS by interviewing people who have the illness and to consider how they navigate the various knowledge and practice discourses that enfold their illness. This contrasts with biomedical attempts to understand CFS, which follow a positivist scientific model geared towards locating an underlying pathogen for the illness. I used in-depth interviews, questionnaires and a visual-based exercise to collect information, and analysed this data using a thematic, grounded analytical technique. I also draw on a range of sociological literature in analysing and presenting the data, including models of illness behaviour, material on illness trajectory and the framing of disease, and Erving Goffman's work on stigma. I examine the study participants' understanding of CFS and the ways in which they have engaged with both knowledge about CFS and management practices/therapeutics. I show that the study participants' initial engagement with biomedicine can be characterised by the sick role model of illness behaviour developed by Talcott Parsons, but that participants' understanding of biomedical knowledge about CFS changes over time, as they begin to question the way that research is conducted and develop sophisticated understandings about biomedical knowledge of the illness. I show that participants eventually recognised that biomedical knowledge and practice is just one dimension of their illness experience. I argue that participants' ultimately bridged gaps in biomedical knowledge and practice, and that they accomplished this in two ways. First, I show that participants interacted and negotiated with both biomedical and complementary practitioners to cobble together pragmatic treatment regimes for their illness from many disciplines and practices; and second, I show how participants developed a broader conception of CFS, which includes spiritual and emotional aspects of their illness, once they realised that biomedical knowledge about CFS is limited and does not fully explain their experience of the illness. However, I show that people with CFS still face stigmatisation because biomedicine arbitrates their illness, and I explore the various ways that they deal with this. In concluding the thesis, I discuss the limitations of both the biomedical model and traditional accounts of illness behaviour for understanding the experience of CFS. I also consider the implications of my research for biomedical treatment of chronic, disabling illness