The Double Invisibilisation of Pain and Gender Role Limitation: The Experience of a Woman with Fibromyalgia

Abstract

Fibromyalgia is a disease with extensive symptoms encompassing generalized pain, sleep disturbance, a scattered mind, headaches, mood swings, sensory hypersensitivity, etc., including bouts of depression, distress and anxiety. The pain is not only a physical symptom, but it's related to the cognitive and emotional, and each person experiences it differently. Objective: to understand the experience of a woman with fibromyalgia, the perception and assessment of her symptoms, her gender role and the coping with her limitations caused by this disease. Method: qualitative paradigm with an interpretive framework. Material: semi-structured interview of a 56-year-old woman with a fibromyalgia diagnosis, living in Mexico City. Results: four categories emerged: 1) Losses and physical barriers, 2) Limitation of the mother/wife role, 3) The double invisibility of symptoms, and 4) Strategies to recover her autonomy and manage emotions. Conclusions: the lack of visibility of this disease has repercussions not only in the diagnosis and treatment, but also in family and social settings where understanding the experiences of the patients becomes a complicated issue because of insufficient information and knowledge. Gender perspective allows us to recognize that the social roles assigned to women, such as being housewives and caretakers, complicate the attention and rest they can have during pain crises, as well as influencing the perception of society towards them when they’re unable to fulfill such roles.

Keywords

• fibromyalgia
• gender
• invisibility
• pain