“Sick but active, tired but healthy”. Narratives of body and self living with HIV

ABSTRACT

Although studies have suggested that physical activity may diminish HIV-related fatigue, little is known about the physical experience or meanings attributed to either. We considered chronic fatigue and physical activity in terms of how they were experienced, interpreted and interrelated within narratives about living with HIV. Thematic analysis of 35 semi-structured interviews with people living with HIV in France led to the creation of four ideal-type narratives. The ideal types illustrated relations between diverse physical and social experiences of fatigue and physical activity. These dimensions of the HIV experience were part of larger identity narratives about the body and self, revealing tensions between the latter as healthy or ill, tired or active, vulnerable or robust, needing or heeding expected health behaviours. Illness narratives – and the meanings attributed to body and self – emerged as faceted by both physical experiences of the body and social experiences, and as situated within larger socio-political contexts and biopedagogies.

KEYWORDS:

• Fatigue
• physical activity
• exercise
• chronic illness
• illness experience

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Agence Nationale de Recherches sur le Sida et les Hépatites Virales (ANRS) [CSS5 2014].

Notes on contributors

Laura Schuft

Laura Schuft is Assistant Professor of sociology with the “Migration and Society” Research Unit (URMIS) at Université Côte d’Azur in France. Her research focuses on the (re)production of diverse experiences, meanings, social categories and relations of power within contexts of health, sport and medicine. She recently co-coordinated (2014-2017) a national project funded by the ANRS regarding fatigue, physical activity and HIV. More recent projects have focused on the differential production and experiences of health recommendations among pregnant women and people living with chronic illness.

Sylvain Ferez

Sylvain Ferez is Assistant Professor of sociology and Director of the research unit “Heath, education, handicap situations” (SANTESIH) at the University of Montpellier in France. His research explores sport, health, and minorities' experiences at the intersections of historical and sociological inquiry. He recently led a major 3-year national project on HIV and physical activities funded by the French association Sidaction.

Alessandro Bergamaschi

Alessandro Bergamaschi is Assistant Professor of sociology with the “Migration and Society” Research Unit (URMIS) at Université Côte d’Azur in France. Specializing in quantitative methods, his research focuses particularly on social representations of diversity.

Fabienne d’Arripe-Longueville

Fabienne d’Arripe-Longueville is Professor of sport sciences specialized in psychology, Director of the Department of Sport and Physical Activity Sciences and former Director of the research unit on “Human motricity, expertise, sport and health” (LAMHESS) at Université Côte d’Azur in France. She was project manager of the national multidisciplinary project on fatigue, physical activity and HIV funded by the ANRS (2014-2017).