Enacted Stigma Experiences and Identity Noticeability of LGBQ+ Women with Rare Diseases

Lesbian, gay, bisexual, and queer (LGBQ+) people and those with rare diseases (RDs) experience considerable enacted stigma due to their sexual identity and disability/RD status. The frequency, severity, and type of enacted stigma is often influenced by identity noticeability. Although research has shown the challenging impacts of compounded oppression on multiply marginalized individuals, there has been no empirical research to date on the experiences of LGBQ+ women with RDs. This mixed methods study used survey and interview methods to explore enacted stigma experiences and identity noticeability of 29 LGBQ+ women with RDs. We found that RD visibility had a significant positive correlation to RD stigma. Additionally, age had a significant negative correlation to RD stigma and RD visibility. Common concerns for participants included healthcare stigma, sexual identity erasure, RD and/or LGBQ+ community exclusion, and heteropatriarchal expectations and norms. Increased research and support are needed for LGBQ+ women with RDs.