The body says it: The difficulty of measuring and communicating sensations of breathlessness

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 (and emotional responses) of breathlessness.

Drawing upon 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 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 Breathe Easy groups in the UK, we give examples of how the wording used to describe sensations are 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 method and anthropology as a disciplinary approach.

We argue biomedicine brings with it a set of cultural assumptions about what it means to measure (and know) the sensorial breathless body in the context of the respiratory clinic (clinical research). We suggest the mismatch between the descriptions (and confusion) of those responding to the respiratory questionnaire items and those selecting the vocabularies in designing it, may be symptomatic of a type of historic testimonial epistemic injustice, founded on the prioritization of clinical expertise over expertise by experience.