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Acquiring a diagnosis of fibromyalgia syndrome: The sociology of diagnosis

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Abstract

Despite past attempts to develop theoretical frameworks to explain diagnostic behaviour, recent work suggests that the sociology of diagnosis needs further development. Accordingly, this article explores the diagnostic search in fibromyalgia syndrome (FMS), a biomedically unexplained disorder. Semi-structured interviews were conducted with 17 people diagnosed with FMS. Analysis was driven by interactionist notions of negotiated order and the self. The diagnosis of FMS is not ascribed, but is achieved through a process of negotiation between patient and doctor, in which power is both wielded and ceded by each party. In the process, individuals with FMS differentiate between the self and the body, where illness is conceptualized as an external force that invades the body and cannot be controlled by the self. It is this meaning of the illness experience, and the emergence of an ‘expert’ self, that guides the individual’s negotiation of an acceptable outcome in the diagnostic search. However, it is also guided by a social discourse that reflects lay understandings of acceptable help-seeking, such as proving one has attempted to cope with the illness, knowing when seeking help is acceptable, as well as cultural expectations regarding access to medical care.

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Notes

  1. Such were the diagnostic criteria at the time of this study; more recent criteria no longer rely on the presence of tender points (Wolfe et al, 2011).

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  1. Faculty of Medicine and Health Sciences, University of East Anglia, Norfolk, NR4 7TJ, UK

    Sue Madden

  2. Arthritis Research UK Primary Care Centre, Institute for Primary Care and Health Sciences, Keele University, Staffordshire, ST5 5BG, UK

    Julius Sim

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Madden, S., Sim, J. Acquiring a diagnosis of fibromyalgia syndrome: The sociology of diagnosis. Soc Theory Health 14, 88–108 (2016). https://doi.org/10.1057/sth.2015.7

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