The Fibromyalgia Story

Barker, K.K. The Fibromyalgia Story: Medical Authority and Women's Worlds of Pain . Philadelphia : Temple University Press , 2005 (pbk) 252 pp . ISBN 1-59213-161-1 Fibromyalgia syndrome (FMS) refers to a collection of chronic, unexplained, diffuse symptoms, primarily affecting women, which include ‘chronic, widespread pain and a host of associated symptoms, including fatigue, headaches, sleep irregularities, irritable bowel syndrome, irritable bladder syndrome, cognitive and mood disorders, and increased sensitivity to stimuli, to name just a few’ (p.3). It is, however, a ‘contested’ illness in that, despite the severity of these symptoms, objective medical tests including x-rays, scans and blood tests, fail to reveal any underlying causative pathology. The ‘fibromyalgia story’ of the title in fact encompasses two, intertwined stories: first, the social construction of the idea of this syndrome and second, women's stories of their experiences of it. The subtitle -‘medical authority and women's worlds of pain’- takes this duality further in its juxtaposition of biomedicine with women's subjective experience of illness. Both stories bring fresh insights to our understanding of the complexities and contradictions surrounding the relationship between chronic illness sufferers and medicine. A further significant element of Barker's study, also encompassed in the subtitle, is the gendered nature of FMS; these stories are also essentially stories about women's experiences. The study draws on data from interviews with women diagnosed with FMS, FMS research publications and FMS self-help materials. Although the prime focus of this text concerns sufferers’ experience of FMS, Barker makes it clear that this experience is mediated through biomedicine's construction of a diagnostic category to represent this collection of symptoms. Accordingly, the first chapter traces the historical development of the idea of FSM as a diagnostic category created by a small group of rheumatologists - referred to as ‘diagnostic entrepreneurs’- linking its development (at least in the USA) to the development of rheumatology as a speciality within medicine. However, Barker argues that the field of rheumatology is itself a ‘professionally precarious’ one in American medicine, partly due to its lack of solutions for the wide range of complex illnesses within its domain. Through exploring this particular contested condition, Barker also highlights the ways in which many other conditions are similarly difficult to diagnose and treat. Indeed, she points to increasing medical uncertainty in response to the contemporary growth in the number of chronic conditions which are not necessarily accommodated by the biomedical model. Interesting contradictions inherent in the gendered nature of FMS are explored in the second chapter. Barker refers to the ‘present absence’ of gender in the construction of this diagnosis: women are present in that the condition primarily affects women, but also absent in that FMS is not conceptualised as a women's health issue. That is, she argues, there is a dearth of research exploring FMS in terms of either sex or gender variables. There are many resonances in this text with existing literature on people's experience of chronic illness, including other contested illnesses such as chronic fatigue syndrome. Classic chronic illness experience themes such as erosion of the self and the effects of fluctuations in the illness symptoms are identified and illuminated through the sufferers’ stories. In addition, there are interesting new insights into illness - especially contested illness - experience. For instance, Barker explores the ways in which people attempt to make sense of the contradiction between the absence of biomedical evidence of their symptoms and their own experience of these symptoms, describing this contradiction as an ‘epistemological crisis’. That is, sufferers are compelled to question the nature of reality by confronting and working through the question of how they know what they know about their bodily experiences. Barker also usefully examines the ways in which the self-help community - accessed through books, newsletters, web sites and real and virtual support groups - shapes the FMS experience. In particular, she argues that by publicly verifying the existence of the FMS diagnosis, the self-help community helps to legitimise the illness despite its contested status, thus confirming the sufferer's diagnosis. The penultimate chapter sheds light on ‘race’ and class differences in relation to FMS, indicating that in the USA it is predominantly an illness of ‘white women of modest means’ (p.170). More significantly, in this chapter, social background information is provided for previously presented interviewees enabling us for the first time to see these women's symptoms set against the context of their difficult lives. Although this chapter provides a cogent analysis of the impact of ‘race’ and class on women's experiences and responses to illness, I wondered why this cultural and socio-economic context was not incorporated into the women's original stories. Overall though, this is a timely and interesting book with much to offer medical sociologists, and those suffering from and treating fibromyalgia

Chronic fatigue syndrome · Fibromyalgia · Headaches · Irritable bowel syndrome · Mood · Psychiatry · Medical and Biological Sciences · Medicine · Psychology