Medical Humanities 48 (1):63-75 (2022)

Authors
Coreen McGuire
University of Bristol
Abstract
Breathlessness is a sensation affecting those living with chronic respiratory disease, obesity, heart disease and anxiety disorders. The Multidimensional Dyspnoea Profile is a respiratory questionnaire which attempts to measure the incommunicable different sensory qualities of breathlessness. Drawing on sensorial anthropology we take as our object of study the process of turning sensations into symptoms. We consider how shared cultural templates of ‘what counts as a symptom’ evolve, mediate and feed into the process of bodily sensations becoming a symptom. Our contribution to the field of sensorial anthropology, as an interdisciplinary collaboration between history, anthropology and the medical humanities, is to provide a critique of how biomedicine and cultures of clinical research have measured the multidimensional sensorial aspects of breathlessness. Using cognitive interviews of respiratory questionnaires with participants from the Breathe Easy groups in the UK, we give examples of how the wording used to describe sensations is often at odds with the language those living with breathlessness understand or use. They struggle to comprehend and map their bodily experience of sensations associated with breathlessness to the words on the respiratory questionnaire. We reflect on the alignment between cognitive interviewing as a method and anthropology as a disciplinary approach. We argue biomedicine brings with it a set of cultural assumptions about what it means to measure the sensorial breathless body in the context of the respiratory clinic. We suggest the mismatch between the descriptions of those responding to the respiratory questionnaire items and those selecting the vocabularies in designing it may be symptomatic of a type of historical testimonial epistemic injustice, founded on the prioritisation of clinical expertise over expertise by experience.
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DOI 10.1136/medhum-2019-011816
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References found in this work BETA

A Cautionary Tale: On Limiting Epistemic Oppression.Kristie Dotson - 2012 - Frontiers: A Journal of Women Studies 33 (1):24-47.
Epistemic Injustice in Healthcare: A Philosophical Analysis.Ian James Kidd & Havi Carel - 2014 - Medicine, Health Care and Philosophy 17 (4):529-540.

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Citations of this work BETA

The Hermeneutics of Symptoms.Alistair Wardrope & Markus Reuber - forthcoming - Medicine, Health Care and Philosophy.

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