“Fibromyalgia, a life companion that you don’t want to have”: A qualitative study on the impact of receiving a diagnostic label of Fibromyalgia from a patient perspective

Fibromyalgia is a prevalent condition with significant impacts for patients. This qualitative study aims to explore how patients experience receiving a fibromyalgia diagnostic label. We performed semi-structured interviews with 13 fibromyalgia patients (11 women, 2 men), from six European countries, recruited online through patient organizations. Most of the participants were female and over 40 years old. Interviews were coded and analysed by two independent researchers. Three themes were identified related to receiving the fibromyalgia label: (1) Changes to myself , including validation and relief, a perceived threat to identity, and concern for having this condition for life. (2) C hanges in relation to others , including losing friends, behaving as part of a group while maintaining individuality of experiences, and developed self-agency. (3) Changes in social roles , including altered work status and shifting priorities. We conclude that providing a fibromyalgia label can have multilayered effects on recipients’ personal identity, relationships and social positions.