Contested illness, contested identity: How women with fibromyalgia construct legitimacy online

Area of Science:

• Sociology of Health and Illness
• Medical Anthropology
• Qualitative Health Research

Background:

• Fibromyalgia (FM) is a contested medical condition, often leading to challenges in patient legitimacy.
• Women with FM experience dilemmas of legitimacy, identity, and morality in healthcare settings.

Purpose of the Study:

• To explore the lived experiences of women with fibromyalgia.
• To understand how women legitimize FM as a medical condition.
• To examine the strategies women use to be recognized as legitimate pain patients.

Main Methods:

• Ethnographic observation within a private online community, "Fibro Women Canada."
• In-depth interviews with community members.
• Analysis of legitimacy-building strategies.

Main Results:

• Fibromyalgia (FM) creates significant legitimacy, identity, and morality dilemmas for sufferers.
• The online community "Fibro Women Canada" serves as a crucial "backstage" for legitimacy building.
• Two key strategies for legitimacy are developed: illness literacy and identity work.

Conclusions:

• Online communities provide vital support for women with fibromyalgia to navigate healthcare challenges.
• Women actively engage in illness literacy and identity work to assert their legitimacy and secure care.
• The study highlights the moral dimensions of seeking biomedical recognition for contested illnesses.