“You have to be healthy to cope with being sick” A qualitative interview study on the power relation between the Swedish healthcare system and endometriosis patients

Abstract

Endometriosis is an inflammatory disease where cells similar to the uterine lining develop outside the uterus. It is estimated that every tenth person with a uterus has endometriosis. However, it is an unprioritised, unfunded and unresearched diagnosis since it only affects individuals assigned female at birth (As-Sanie et al., 2019). Women with chronic pain are generally perceived by healthcare personnel as hysterical, emotional, and complaining, and compared to men, receive less effective pain relief, less pain medication with opioids, more antidepressants, and more mental health referrals (Samulowitz et al., 2018). With this in mind, this study aims to analyse the power relations between the interviewed endometriosis patients and the Swedish healthcare system through 20 qualitative interviews with participants aged 17-52. Two research questions were chosen to enable the analysis: How do the participants experience the Swedish healthcare personnel’s reception of them as endometriosis patients? and What power do the participants have over the treatment of their endometriosis? The chosen theories are agency and an intersectional perspective on Foucault's theory on power relations, power/knowledge and pastoral power. The results of this study showcase a psychologically draining situation where endometriosis patients are exposed to resistance, derision, prejudices and lack of knowledge within the Swedish healthcare system. To receive treatment and quality of life, the participants gained strategies and knowledge on their own to navigate the perplexing situation.