Caught up in care – chronic fatigue and self-management

Mette Bech Risør

Professor, UiT The Arctic University of Tromsø, Department of Community Medicine, General Practice Research Unit and University of Copenhagen, Department of Public Health, The Research Unit for General Practice.

In this talk, I will introduce an on-going research interest in medically unexplained symptoms/contested disorders. The notion of illness perception or illness explanation has been central to this interest, as well as negotiations on diagnosis in clinical encounters and the healthcare seeking processes patients engage in. Through an example of a recent study, I wish to follow up a theoretical inspiration from sensorial anthropology and combine this with an analysis of self-management. Based on ethnographic fieldwork in a hospital clinic in Norway, I focus on how patients with chronic fatigue during diagnostic assessment receive advice, based on ideas of self-management and conveyed as “activity regulation”. During the study, patients were observed having consultations with four different health professionals. The final discussion where the professionals discussed which diagnosis and care plan they would agree on, was also included. Overall, I contend that the ideology and technology of self-management framed the hope for recovery and crafted a subject with the ability to improve. Patients, however, lingered between everyday social predicaments – they eagerly demonstrated their competences and everyday concerns and priorities – and ideals of healthy living, and they were caught up in cultural models of care that deflected everyday concerns and agency. Summing up, I will briefly present future inspirations for elaborating the phenomenon of contested disorders further, three different perspectives that I am currently working on and that spring from my recent readings and work.