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(医学无法解释的)疾病背景下的(不)尊重和羞耻感。

(Dis)respect and shame in the context of 'medically unexplained' illness.

机构信息

Institute for Medical Humanities, Caedmon Building, Durham, UK.

出版信息

J Eval Clin Pract. 2022 Oct;28(5):909-916. doi: 10.1111/jep.13740. Epub 2022 Jul 27.

DOI:10.1111/jep.13740
PMID:35899324
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9796720/
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.

摘要

目前,相当一部分躯体症状仍然无法用医学来解释。这些症状很常见,可以影响身体的任何部位,并可能导致各种后果——从轻微的、短暂的不便到严重的、慢性的残疾——但医学检查没有发现明显的病理。本文探讨了两种所谓的“无法用医学解释”的疾病的第一人称描述:一种发表在回忆录中,另一种在半结构化访谈中产生。这两个文本都揭示了在遇到医疗保健专业人员的不尊重时所产生的羞耻感。本文的第一部分,临床遭遇,探讨了不尊重的问题,我认为,在这些文本中,不尊重以三种相互关联的形式出现:当疼痛被视为“无法用医学解释”时不尊重疼痛,不尊重患者对自己疼痛的描述,以及不尊重患者本人。第二部分阐明了由于遇到这种不尊重而产生的羞耻感。我认为,患有所谓的“无法用医学解释”疾病的患者承受着双重负担。他们不仅要忍受躯体上的痛苦,还要承受社会上的痛苦——不仅要忍受他们的症状,还要忍受医疗系统中不尊重、创伤和羞耻的经历。最后,我反思了临床培训急需改变的问题,这可能会改善这些患者的生活质量,即使他们的症状没有得到解释、治疗或治愈。