Cole, JM, Grogan, S and Turley, E (2021) “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity. Feminism & Psychology, 31 (2). 171 - 191. ISSN 0959-3535

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<jats:p> 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. </jats:p>

Item Type: Article
Additional Information: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (
Uncontrolled Keywords: endometriosis; self-silencing; identity; gender roles; thematic analysis; UK
Subjects: B Philosophy. Psychology. Religion > BF Psychology
R Medicine > R Medicine (General)
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Divisions: Faculty of Medicine and Health Sciences > School of Medicine
Depositing User: Symplectic
Date Deposited: 23 Sep 2022 10:06
Last Modified: 23 Sep 2022 10:06

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