Knowledge and strategies for coping with fibromyalgia.

Objective: To analyze the knowledge about fibromyalgia of people with this diagnosis and its repercussions in coping with the disease.

Method: Qualitative research, based on the Social Representation Theory framework. Thirty people over 18 years old and from the state of Rio de Janeiro, Brazil, participated. Snowball sampling was applied to recruit participants and a semi-structured interview was used to produce data, between April 2020 and January 2021. Statistical and lexicographic analysis was performed using Alceste.

Results: Most participants were women (93%); aged 41 to 60 years old (67%); of whom 63% were married; had been diagnosed 10 years ago or more (40%); and 40% participated in support groups. They did not know the name of the disease and its causes, but they mentioned its symptoms, mainly pain. Objectification of fibromyalgia occurs in painful symptoms and the lack of signs in the body generates misunderstanding among the people they live with. They share experiences in support groups to cope with the disease.

Conclusion: The subjective phenomenon of pain generates distrust about the disease. Diagnosis difficulties delay treatment and insufficient information generates judgments and stereotypes for patients. Prejudices and rejections have repercussions on coping with the disease.