The most lonely condition I can imagine: Psychosocial impacts of endometriosis on women's identity

Endometriosis is a condition which affects around 1-2% of women worldwide and has profound effects on their everyday lives. Previous research has tended to focus on physical symptoms (such as chronic pain); how women manage changes to their identity and relationships as a result of endometriosis has received less attention. This paper discusses qualitative data examining how women negotiate changes to identity while living with endometriosis, in a social context where women are expected to minimise their symptoms and conform to feminine role expectations. We conducted thematic analysis of 34 replies to an online survey seeking qualitative text responses. The women identified disruptions to personal identity as a result of living with endometriosis. They talked about not feeling like themselves (Theme 1) and about reactions from medical and social connections prompting feelings that they were going mad (Theme 2). Participants also expressed feeling as though they were a burden to loved ones (Theme 3), which often resulted in self-silencing (Theme 4). Findings are discussed in the context of Western expectations of women's roles in social relationships and suggest that professionals who support women with endometriosis should be aware of strategies such as self-silencing which may reduce effective self-care.

Automated summary

Endometriosis affects women's everyday lives and personal identities, with many feeling like they are not themselves and experiencing negative reactions from medical and social connections. This highlights the importance of professionals supporting women with endometriosis being aware of the impact on identity and relationships, and being mindful of strategies such as self-silencing that may hinder effective self-care.