“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...

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Bibliographic Details
Published in:Feminism & psychology 2021-05, Vol.31 (2), p.171-191
Main Authors: Cole, Jennifer M, Grogan, Sarah, Turley, Emma
Format: Article
Language:English
Subjects:
Change agents
Chronic pain
Connectedness
Endometriosis
Female roles
Identity
Loneliness
Medicine
Physical symptoms
Psychosocial factors
Self care
Self concept
Social environment
Social relations
Symptoms
Women
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Summary: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.
ISSN:0959-3535
1461-7161
DOI:10.1177/0959353520930602