Emotions of endometriosis in clinical encounters: An analysis of women's experiences of health care

Abstract

BackgroundA large number of illnesses that lack physical visibility are characterised by troubled clinical encounters. Endometriosis is one such condition with very real and often debilitating symptoms that remain invisible to the clinician's eye, but are experienced and lived by the patient.MethodThis paper probes into two first person accounts of endometriosis to find out how endometriosis patients experience health care. The Tiger and the Cage: A Memoir of a Body in Crisis (2022) by Emma Bolden and Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics (2020) by Lara Parker are both memoirs that details on the trivialisation and delegitimization of the women's accounts of their own lived reality by a health care system that often privileges medical evidence over lived experiences of the patients. After giving a brief introduction on the condition, the paper goes on to detail on the method and conceptual frameworks chosen for analysis. This is followed by an in‐depth analysis into the two texts using thematic analysis proposed by Virginia Braun and Victoria Clarke to identify shared patterns of meanings in the texts.DiscussionThe identified themes take the form of emotions repeatedly narrated by the women. The findings indicate instances of disrespect, epistemic invalidation and compromised autonomy, due to which six shared categories of negative emotions are experienced by the patients: self‐doubt, shame, fear, powerlessness, self‐blame and anger.ConclusionThe paper concludes by indicating the urgency of improved medical training, that better educates and facilitates health care professionals in dealing with conditions with complicated aetiology, difficult diagnosis and no cure.