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

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.

Keywords:

• risk
• uncertainty
• noncompliance
• endometriosis

Notes

1. The Ian Gawler Foundation is a holistic healing centre for people suffering from cancer and other chronic illnesses. It is located in Victoria, Australia. It was established in 1983 by Dr Ian Gawler following his remission with cancer. The Foundation describes itself as offering ‘a combination of self help techniques and holistic approaches to healing,’ based upon a ‘philosophy that regaining balance in one's life leads to healing.’ Available from: http://www.gawler.org/html/s01_home/home.asp [Accessed 19 February 2009].

2. It should be noted that in recent years, physicians have sought to minimise these side effects through the administration of hormonal add-back therapy similar to the kind often prescribed to menopausal women (Olive and Pritts 2001, p. 268).