‘This really explains my case!’: biographical reconstruction of Japanese people with fibromyalgia meeting peers

ABSTRACT

Fibromyalgia (FM) is a controversial disorder with an unknown organic basis, so the legitimacy of the disease is controversial. People with FM struggle to explain their ‘invisible’ illness and to reconstruct their biographies. This study focuses on the significance of self-help groups (SHGs) in the process of reconstructing biographies of persons with FM. We interviewed 13 individuals with FM who participated in 2 different types of SHGs. Informants suffer from disparities between their severe bodily symptoms and appraisals from others, resulting in self-doubt and existential crisis. These disruptions were partially repaired by receiving a diagnosis, but this provided limited power to explain their ‘unreasonable’ disruption. Our findings indicate the importance of hearing the life stories of peers which can repair informants’ disrupted biographies through the fu-ni-ochiru experience, a form of comprehension of one's illness by which the informant obtains a clear perspective through physical sensation, or full acceptance rather than logical understanding. Thus, our study expands knowledge regarding how people with FM reconstruct their biographies.

KEYWORDS:

• Biographical reconstruction
• Japan
• fibromyalgia
• self-help group
• phenomenology
• qualitative
• sociology

Acknowledgements

We thank all the participants in this study and the Japanese Fibromyalgia Support Association, as well as everyone who worked for the Japan Chronic Disease Self-Management Association, and my colleagues at Saitama Prefectural University, the members of the Department of Health Communication at The University of Tokyo.

Additional information

Funding

This study was funded by the Grant-in-Aid for JSPS (Japan Society for the Promotion of Science) Fellows during the fiscal years of 2010–2012 and the Health Labour Sciences Research Grant (Research on Allergic disease and Immunology) during the fiscal year of 2007.