Academic journal article Health Sociology Review

'This Really Explains My Case!': Biographical Reconstruction of Japanese People with Fibromyalgia Meeting Peers

Academic journal article Health Sociology Review

'This Really Explains My Case!': Biographical Reconstruction of Japanese People with Fibromyalgia Meeting Peers

Article excerpt


Fibromyalgia (FM) is a condition that leads to widespread pain throughout the body and a variety of concomitant symptoms. Diagnostic criteria for FM were devised in 1990 (Wolfe et al., 1990). Some studies suggest that abnormal function of the brain (central sensitisation or brain inflammation) is found in some FM patients (Desmeules et al., 2003), and recent studies indicate that glial cell activation and neuroinflammation are possible causes of chronic pain (Ji, Berta, & Nedergaard, 2013). However, the exact pathophysiological cause of FM is unknown, and no established treatment exists. Therefore, there is still controversy over the concept of FM. The primary trigger for this controversy is the 'invisibility' of FM (Barker, 2002); FM is not only visually inapparent, it currently lacks an aetiological explanation of physical causation. Empirical research has shown that FM receives little attention among physicians in comparison with other illnesses (Album & Westin, 2008), especially in Japan (Homma, Ishikawa, & Kiuchi, 2014).

In Japan, FM is called Senni-kintsu-sho, but only 8% of lay persons have heard of it (Matsumoto, 2007). The diagnostic criteria devised by the American College of Rheumatology (Wolfe et al., 1990) is also applied in Japan. An FM Study Group for the Ministry of Health, Labour and Welfare was initiated in 2003, and their surveys are almost the only source of information about the situation of FM patients in Japan. An epidemiological study indicated a prevalence of FM similar to that in Europe and the USA (~1.6%), with an estimated 2 million potential patients. However, surveys indicated that only 32.2% of primary care physicians were familiar with the condition (Matsumoto, 2007). In comparison with the fact that most physicians overseas have long been aware of FM, awareness of FM in Japan has lagged markedly. Given such circumstances, Japanese patients with FM have difficulty seeking medical help for their condition, which results in their unusual predicament.

Because of these features, some patients have been stigmatised, for example, they are suspected of being lazy or pretending to be ill, in addition to the symptoms they suffer (Åsbring & Närvänen, 2002; Werner, Isaksen, & Malterud, 2004). These problems have been discussed in sociological research on patients with Medically Unexplained Symptoms (MUS). According to Nettleton (2006), three themes are evident in these studies: 'living with uncertainty'; 'issues of legitimacy'; and 'resistance to psychological explanations of pain and suffering'. People with FM also face psycho-social problems, including a low quality of life and a high rate of suicidal ideation (Bernard, Prince, & Edsall, 2000). Thus, their suffering is existential in nature (Råheim & Håland, 2006).

As mentioned, because the complex suffering of FM patients is deeply rooted in a social context, exploratory studies from the patient's point of view are crucial to understanding this suffering. A framework for studying the chronic illness experience is Bury's concept of biographical disruption. According to Bury (1982), 'chronic illness ... is precisely that kind of experience where the structures of everyday life and the forms of knowledge which underpin them are disrupted' (p.169). Corbin and Strauss (1987) further defined three elements of one's biography: (1) conceptions of self, (2) biographical time, and (3) body. According to Corbin and Strauss, this relationship, that is, 'the BBC (biography, body, and conceptions of self) chain' (Corbin & Strauss, 1987, p. 253), is disrupted in patients with a chronic illness. Charmaz (1983), who interviewed patients with various chronic illnesses, concluded that patients experienced a loss of self and have difficulty constructing a new self-image.

Conversely, there is a line of research that focuses on the re-interpretation of self or identity that occurs with illness, that is, the 'work' patients undergo to repair their disrupted biographies (Corbin & Strauss, 1985, 1987). …

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