Volkmann, Anna-Maria; (2018) Making meaning of contested illness: medical uncertainty and fibromyalgia. Doctoral thesis (Ph.D), UCL (University College London).

Abstract

The work presented in this thesis aimed to investigate the way in which individuals who have been diagnosed with fibromyalgia make meaning in the face of medical uncertainty. Medical uncertainty in fibromyalgia has been found to be a defining feature of the condition, as much as specific clinical symptoms. The argument is supported by evidence from the literature as well as through empirical studies presented here. A review of the history and review of current medical literature on fibromyalgia established that little consensus exists among experts about the condition, creating uncertainty. Biomedical ‘culture’ creates an environment in which those with a clinically invisible illness, such as fibromyalgia, must be extremely resourceful to affect positive change in their lives. To do the heterogeneity of the study population justice, a novel combination of three different research methods was developed for this thesis: 1) the nature of online social support in contested illness was examined through an innovative approach to thematic analysis on Social Networking Sites (Facebook). 2) A mixed-method Q-Study was carried out to identify shared patterns in attitudes and opinions in those with fibromyalgia. And, 3) the lived experience of a fibromyalgia patient was studied in depth through ethnographic participant observation, as well as interviews with family members and primary and secondary care providers. This thesis contributes to current knowledge of fibromyalgia by showing that social support - a key component of good health - is denied to many with the condition. Individuals with fibromyalgia are able to gain some social support on social networking sites, but also often at the cost of increasing alienation in their immediate family - and friend - environments. Further, individuals with fibromyalgia respond to medical uncertainty either as danger or as opportunity, but often more creatively than previously reported in the literature. This thesis also contributes to current knowledge of standard research methods in the social sciences, and advocates for a more generous approach to mixing various methodologies.

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