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

摘要

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.