(Dis)respect and shame in the context of ‘medically unexplained’ illness

Abstract

A significant proportion of somatic symptoms remain, at present, medically unexplained. These symptoms are common, can affect any part of the body, and can result in a wide range of outcomes—from a minor, transient inconvenience to severe, chronic disability but medical testing reveals no observable pathology. This paper explores two first‐ person accounts of so‐called ‘medically unexplained’ illness: one that is published in a memoir, and the other produced during a semi‐structured interview. Both texts are revelatory for their expression of shame in the context of encountering disrespect from healthcare professionals. The first section of my paper, clinical encounters, explores disrespect which, I argue, takes three interconnecting forms in these texts: disrespect for pain when it is seen as ‘medically unexplained’, disrespect for the patient's account of her own pain, and disrespect for the patient herself. The second section elucidates the shame that occurs as an affective and embodied consequence of encountering such disrespect. I claim that patients living with so‐called ‘medically unexplained’ illnesses suffer a double burden. They endure both somatic and social suffering not only their symptoms, but also disrespectful, traumatic and shame‐inducing experiences of healthcare systems. I conclude with a reflection on the urgent need for changes in clinical training that could improve the quality of life for these patients, even in the absence of an explanation, treatment or cure for their symptoms.