The social construction of fibromyalgia as a health problem from the perspective of policies, professionals, and patients

Abstract

Background: Fibromyalgia is a painful chronic disease, suffered mainly by women, that consolidates a number of symptoms and skeletal muscle issues which are little understood. Objectives: To explore the social construction of FM from the perspective of health policies, patients, and health professionals involved in their medical attention. Methods: I) Policy review of national and regional health plans in a national and international context, the clinical protocols for fibromyalgia in Spain, and the Parliamentary initials in the European and Spanish context; and ii) Qualitative study involving 28 personal interviews with 16 fibromyalgia patients and 12 interviews with health care professionals in Spain. Results: The findings show that in Spain, the fact that fibromyalgia lacks recognition still remains: in policies, in the clinical and professional fields, and in the patients’ social circle. International health policy has not yet taken steps to reflect the emergence of this recently diagnosed disease. The care for patients suffering from fibromyalgia, who are mainly women, leads to frustration among the healthcare professionals and desperation among the patients themselves, as a resolutive treatment for the disease is not existing. Patients show resistance at assuming the sick role. They want to carry on undertaking their daily activities, both in the public sphere and in the private one. Roles involving the gendered division of labour were found to follow a rigid pattern, both prior to and subsequent to the disease, as the causes that led to frustration for men or women differ according to activities that are socially assigned to them. In practice, FM is conceived exclusively as a women’s health problem, which may result in a gender-biased patient healthcare attention. Conclusion: Political, professional and individual spheres have an influence on how this disease is constructed on a social level: as one of the “invisible women’s diseases”. It is recommended to resolve the disease’s lack of recognition by i) implementing specific policies for FM and ii) increasing the training and sensitization of health providers about the severity of FM and the existence of gender prejudices biasing the attention.

This work was funded by the Centre of Women’s Studies at the University of Alicante (Spain) and Gender COSTAction Scientific Mission.