Objective:

To explore the beliefs, knowledge, and attitudes towards the disease in women suffering from Fibromyalgia (FM).

Material and methods:

A qualitative study based on a focus group discussion was conducted. The patients were identified and recruited at the Association of Fibromyalgia and Chronic Fatigue of Tenerife (AFITEN) through an intentional non-probabilistic sampling according to the following inclusion criteria: 1) female users of the association, 2) over 18 years of age, 3) diagnosed with FM, 4) without therapeutic ties, kinship and/or friendship with the research staff, 5) who understood and spoke Spanish fluently, and 6) who gave their written consent to participate. A thematic analysis was carried out on the answers to open questions aimed at exploring the thematic units: 1) knowledge about FM, 2) experiences with FM, 3) coping strategies, 4) expectations about the management of health system and 5) expectations about the health professional. 12 women with a mean age of 62.2 years (SD = 11.6) were included. The mean age of diagnosis was 31.8 years (SD = 12.0) while the duration of symptoms was 32.2 years (SD = 13.7).

Results:

The pain in the life of patients with FM leads to a deterioration in the social, family and/or work level that they fight with a positive attitude. They emphasized the importance of adequate information and the benefits of multidisciplinary treatment by trained professionals. In this sense, associationism is beneficial, since it can provide information about the disease and access to low-cost treatments, as well as emotional and social support, which helps them break their isolation and give them a voice in society. Lastly, dissatisfaction with the health system and professionals' fuels misunderstanding and a feeling of impotence in the face of constant rejection or ridicule.

Conclusions:

The pain induced by FM is considered by the patients as a physical and psychological experience mediated by social aspects. In these cases, having the support of the environment is the key to accepting the disease. His resistance to taking care of them challenges the stability of the family nucleus. Although they admit to loving their job and wanting to rejoin, the truth is that the disease puts them at risk of poverty. In relation to coping with the disease, the need to restore body identity is inserted in the discourse of modern society on the cult of the body and performance. Likewise, treatment failures lead them to resort to alternative therapies. To deal with FM, joining an association provides them with protection, access to specialized treatments that they cannot afford on their own, and greater participation in political decision-making. They expect little from the public health system since it does not allow them to establish a relationship of trust with their doctors. Regarding them, they complain that they resort to physical aspects, such as obesity or gender, to explain their ailments. They attribute this to the lack of training in FM and, in some cases, to a lack of humility, although they acknowledge their continuous effort to provide solutions and defend the need to continue researching on the subject.

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