‘Nobody really knows what it is or how to treat it’: Why women with endometriosis do not comply with healthcare advice

Kate Seear
In: Health, Risk & Society · 2009 · vol. 11(4) , pp. 367–385 · doi:10.1080/13698570903013649 · W2039572242
article OA: closed CC0 ⤵ 26 in-corpus citations
View on OpenAlex View at publisher
⚙ AI-generated summary by gemini-2.5-flash-lite, 2026-06-07 ⓘ

This study explores how women with endometriosis rationally disregard healthcare advice due to its perceived burden, cost, impossibility, and mistrust of medical expertise regarding their condition.

One-sentence paraphrase of the abstract; not a substitute for reading it. No clinical advice. How this works

Abstract

This paper examines the phenomenon of non-compliance with health advice among 20 women who have been diagnosed with a chronic and incurable gynaecological condition called endometriosis. Non-compliance with health advice has been identified as a major problem in health education and behavioural literature. Constructed as a problem largely of individual patients, much research focuses upon the traits that predispose individuals to non-compliance and communication barriers to compliance. The promotion of encouragement is assumed to be an appropriate health care goal. In this paper I explore non-compliance from the perspective of the women, arguing that women's non-compliance is a form of rational expertise equivalent to scientific and medical expertise. Women's non-compliance emerges out of their subjective experiences of self-care and risk-avoidance injunctions as burdensome and excessive, as well as practically impossible, time-consuming and too expensive. Non-compliance is also motivated by a desire to avoid exposure to potential risks that can arise from compliance itself. Women also resist risk-avoidance advice on the basis of their scepticism and mistrust of doctors, whose expertise about endometriosis they doubt. This analysis contributes to our understanding of patient non-compliance and has ramifications for how health promotion and risk-avoidance campaigns are constructed and implemented, especially where chronic illnesses are concerned.

My notes (saved in your browser only)

Condition tags

endometriosis

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (79)

Cited by (27)

Source provenance

openalex
last seen: 2026-06-10T17:14:06.276822+00:00
unpaywall
last seen: 2026-09-09T06:31:01.691765+00:00
License: CC0 · commercial use OK