To be or not to be sick and tired: Managing the visibility of HIV and HIV-related fatigue

Abstract

This article takes a new direction in exploring HIV-related fatigue by adopting a qualitative interactionist approach. We analyse the social meanings attributed to fatigue among people living with HIV in France, the social gains and losses of its visibility and the social frames that condition its discursive and physical expression. The two-part methodology combines grounded theory analysis of 50 transcribed unstructured interviews conducted across France and participant observations within four HIV-related associations. Results reveal that the visibility of fatigue is in part dependent on the visibility of this stigmatized illness. The expression of fatigue is therefore closely linked with disclosure and concerns about HIV stigma. The degree to which HIV and HIV-related fatigue are rendered (in)visible also depends on structural factors including gender prescriptions, as well as context effects such as the type of social or 'care' relations involved in the social frame of interaction.

Fatigue among South African adolescents living with HIV: is the Chalder Fatigue Questionnaire a suitable measure and how common is fatigue?

“…Fatigue is a common and disabling symptom among persons living with HIV (Barroso & Voss, 2013), but little is known about how to assess it among adolescents, particularly in low and middle income countries where rates of HIV in this age group are highest (Joint United Nations Programme on HIV/AIDS [UNAIDS], 2014). Chronic fatigue is a prolonged state of tiredness, exhaustion and lack in energy (Schuft, Duval, Thomas, & Ferez, 2017). It is inherently subjective and as such, is most frequently assessed by self-report e.g.…”

Life Experiences in Parenting: The Perspective of Women with HIV-AIDS

“…The mothers become passive in providing care for children [12]. The main factors are physical fatigue of the mothers and psychological burden [29].…”

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

“…The latter concept considers that people have agency to "choose" to a certain extent how they live with or manage chronic illness. Recent research has suggested that such "choices" as well as the physical experience of HIV are facetted by social contexts of interaction, and an interplay between the sentiment of HIV (in)visibility (Persson 2005;Thomas et al 2014;Alexias et al 2016) and the acceptability of disclosing HIV or physical symptoms (Mackworth-Young, Bond, and Wringe 2020; Schuft et al 2018). These findings suggest that illness narratives are influenced by both physical experiencesregarding the body, treatments or symptomsand social experiences along illness trajectories.…”

“…Whether constituting a major "biographical disruption" (Bury 2001) or a "life-event" (Goffman 1963) among social and economic hardships (Ciambrone 2001;McGrath et al 2014;Wouters and Wet 2016), HIV diagnosis entails a certain amount of ongoing adaptations or identity work. These adaptations are in interaction with HIV stigma (Geary et al 2014;Marsicano et al 2014;Smith, Rossetto, and Peterson 2008) and the illness itself, including medical monitoring or the management of symptoms or treatment side effects (Alexias, Savvakis, and Stratopoulou 2016;Schuft et al 2018).…”

“…The experience of illness symptoms or health recommendations are also integral to the social construction of illness (Conrad and Barker 2010) and the self living with chronic illness (Baumgartner and David 2009;Charmaz 2002;Clarke and James 2003). Chronic fatigue and physical activityviewed respectively as an illness symptom (Schuft et al 2018) and recommended health behaviour (Duval et al 2016;Ferez and Luauté 2008) among people living with HIV (PLWH) in Francehave rarely been studied qualitatively or in relation to each other.…”