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.
AsbringP (2001) Chronic illness – A disruption in life: Identity-transformation among women with chronic fatigue syndrome and Fibromyalgia. Journal of Advanced Nursing34(3): 312–319.
2.
AsbringPNarvanenAL (2002) Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research12(2): 148–160.
3.
BarrosoJCarlsonJRMeynellJ (2003) Physiological and psychological markers associated with HIV-related fatigue. Clinical Nursing Research12: 49–68.
4.
BarrosoJHammillBGLesermanJ. (2010) Physiological and psychosocial factors that predict HIV-related fatigue. AIDS and Behavior14(6): 1415–1427.
5.
BarrosoJVossJG (2013) Fatigue in HIV and AIDS: An analysis of evidence. Journal of the Association of Nurses in AIDS Care24(1S): S5–S14.
6.
BertauxD (1981) Biography and Society. Beverly Hills, CA: SAGE.
7.
BorchertJRickabaughCA (1995) When illness is perceived as controllable: The effects of gender and mode of transmission on AIDS-related stigma. Sex Roles33(9): 657–668.
8.
BreitbartWMcDonaldMVRosenfeldB. (1998) Fatigue in ambulatory AIDS patients. Journal of Pain and Symptom Management15(3): 159–167.
9.
BuryM (1982) Chronic illness as biographical disruption. Sociology of Health & Illness4(2): 167–182.
10.
ButlerJ (1990) Gender Trouble. New York: Routledge.
11.
CharmazK (1991) Good Days, Bad Days: The Self in Chronic Illness and Time. New Brunswick, NJ: Rutgers.
12.
CharmazK (2000) Grounded theory in the 21st century: Applications for advancing social justice studies. In: DenzinNKLincolnYS (eds) Handbook of Qualitative Research. Thousand Oaks, CA: SAGE, pp. 507–535.
13.
ClarkeJN (1999) Chronic fatigue syndrome: Gender differences in the search for legitimacy. The Australian and New Zealand Journal of Mental Health Nursing8(4): 123–133.
14.
ClarkeJNJamesS (2003) The radicalized self: The impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Social Science & Medicine57: 1387–1395.
15.
ConradPBarkerKK (2010) The social construction of illness: Key insights and policy implications. Journal of Health and Social Behavior51(S): S67–S79.
16.
CorbinJStraussA (1991) A nursing model for chronic illness management based upon the trajectory framework. Scholarly Inquiry for Nursing Practice5: 155–174.
17.
DaftaryA (2012) HIV and tuberculosis: The construction and management of double stigma. Social Science & Medicine74: 1512–1519.
18.
DenzinNK (2009) The Research Act: A Theoretical Introduction to Sociological Methods. New Brunswick, NJ: Rutgers.
19.
Devos-CombyLDevosT (2001) Social norms, social value, and judgments of responsibility. Swiss Journal of Psychology60(1): 35–46.
20.
Dray-SpiraRWilson d’AlmeidaKAubrièreC. (2013) État de santé de la population vivant avec le VIH en France métropolitaine en 2011 et caractéristiques des personnes récemment diagnostiquées. Premiers résultats de l’enquête ANRS-Vespa2 [Health status of people living with HIV followed at hospital in metropolitan France in 2011 and characteristics of those recently diagnosed. Results of the ANRS-VESPA2 Study]. Bulletin épidémiologique hebdomadaire26–27: 285–292.
21.
DworkinSLWachsFL (2000) The morality/manhood paradox: Masculinity, sport, and the media. In: McKayJMessnerMSaboD (eds) Masculinities, Gender Relations, and Sport. London: SAGE, pp. 47–66.
22.
FeketeEMWilliamsSLSkintaMD. (2016) Gender differences in disclosure concerns and HIV-related quality of life. AIDS Care28(4): 450–454.
23.
FerezSFougeyrollasPMarin-DuvalE (2013) Note de synthèse. Participation sociale des Personnes Vivant avec le VIH (PVVIH) dans l’accès aux loisirs en Languedoc-Roussillon: Effets du diagnostic, des carrières de malade chronique et des environnements associatifs’. Unpublished report for the French Ministry of Health and Social Affairs MiRe DREES.
24.
FerezSMarin-DuvalEThomasJ. (2014) Continuer à s’engager dans des loisirs après avoir été infecté au VIH: Entre quête de normalité et prescription sociale. Loisir et Société/Society and Leisure37(3): 205–223.
25.
FlowersPDavisMHartG. (2006) Diagnosis and stigma and identity amongst HIV positive Black Africans living in the UK. Psychology and Health21(1): 109–122.
26.
FlowersPDuncanBFrankisJ (2000) HIV risk management amongst Scottish Gay men. Journal of Community and Applied Social Psychology10(4): 285–300.
27.
GearyCParkerWRogersS. (2014) Gender differences in HIV disclosure, stigma, and perceptions of health. AIDS Care26(11): 1419–1425.
28.
GlaserBGStraussAL (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago, IL: Aldine.
29.
GoffmanE (1963) Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster.
30.
GoffmanE (1999 [1959]) The Presentation of Self in Everyday Life. Gloucester, MA: Peter Smith.
31.
GussowZTracyGS (1968) Status, ideology and adaptation to stigmatized illness: The case of leprosy. Human Organization27: 316–325.
32.
HankivskyO (2012) Women’s health, men’s health, and gender and health: Implications of intersectionality. Social Science & Medicine74: 1712–1720.
33.
HarmonJLBarrosoJPenceBW. (2008) Demographic and illness-related variables associated with HIV-related fatigue. Journal of the Association of Nurses in AIDS Care19(2): 90–97.
34.
HarrisM (2009) Injecting, infection, illness: Abjection and hepatitis C stigma. Body & Society15(4): 33–51.
35.
HillmanA (2014) ‘Why must I wait?’ The performance of legitimacy in a hospital emergency department. Sociology of Health & Illness36(4): 485–499.
36.
JongEOudhoffLAEpskampC. (2010) Predictors and treatment strategies of HIV-related fatigue in the combined antiretroviral therapy. AIDS24(10): 1387–1405.
37.
JusterRPSmithNGOuelletE. (2013) Sexual orientation and disclosure in relation to psychiatric symptoms, diurnal Cortisol, and allostatic Load. Psychosomatic Medicine75(2): 103–116.
38.
LeeKALentzMJTaylorDL. (1994) Fatigue as a response to environmental demands in women’s lives. Image: Journal of Nursing Scholarship26: 149–154.
39.
LinkBGPhelanJC (2001) Conceptualizing stigma. Annual Review of Sociology27: 363–385.
40.
MarsicanoEDray-SpiraRLertF. (2014) Multiple discriminations experienced by people living with HIV in France: Results from the ANRS-Vespa2 study. AIDS Care26(1): S97–S106.
41.
MiaskowskiC (2004) Gender differences in pain, fatigue, and depression in patients with cancer. Journal of the National Cancer Institute Monographs32: 139–143.
42.
ParkerRAggletonP (2003) HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Science & Medicine57(1): 13–24.
43.
ParsonsT (1951) The Social System. New York: Free Press.
44.
PerssonA (2005) Facing HIV: Body shape change and the (in)visibility of illness. Medical Anthropology24(3): 237–264.
45.
PetrakJADoyleAMSmithA. (2001) Factors associated with self-disclosure of HIV serostatus to significant others. British Journal of Health Psychology6(1): 69–79.
46.
PopayJ (1992) ‘My health is alright, but I’m just tired all the time’: Women’s experience of ill health. In: RobertsH (ed.) Women’s Health Matters. London: Routledge, pp. 99–120.
47.
RenfrowDG (2004) A cartography of passing in everyday life. Symbolic Interaction27(4): 485–506.
48.
RothJ (1972) Some contingencies of the moral evaluation and control of clientele: The case of the hospital emergency service. American Journal of Sociology77(5): 839–856.
49.
SmithRRossettoKPetersonBL (2008) A meta-analysis of disclosure of one’s HIV-positive status, stigma and social support. AIDS Care20(10): 1266–1275.
50.
StedmanTL (1995) The American Heritage Stedman’s medical dictionary. Boston: Houghton Mifflin Co.
51.
StrachanEDBennettWRRussoJ. (2007) Disclosure of HIV status and sexual orientation independently predicts increased absolute CD4 cell counts over time for psychiatric patients. Psychosomatic Medicine69(1): 74–80.
52.
StutterheimSEBosAERPryorJB. (2011) Psychological and social correlates of HIV status disclosure: The significance of stigma visibility. AIDS Education and Prevention23(4): 382–392.
53.
ThiaudièreC (2002) Sociologie du sida. Paris: La Découverte.
54.
ThomasJHéasSThiandoumB (2012) ‘Les’ femmes? Le VIH, catalyseur des effets sociaux. In: FerezSThomasJ (eds) Sport et VIH. Un corps sous contrainte médicale. Paris: Téraèdre, pp. 129-141.
55.
Van WijkCMKolkAM (1997) Sex differences in physical symptoms: The contribution of symptom perception theory. Social Science & Medicine45: 231–246.
56.
VossJG (2005) Predictors and correlates of fatigue in HIV/AIDS. Journal of Pain and Symptom Management29: 173–184.
57.
WaltersVDentonM (1997) Stress, depression and tiredness among women: The social production and social construction of health. The Canadian Review of Sociology and AnthropologyXXXIV(1): 53–69.
58.
WeitzR (1990) Living with the Stigma of AIDS. Qualitative Sociology13: 23–38.
59.
WiderbergK (2006) Embodying modern times: Investigating tiredness. Time & Society15: 105–120.
60.
WyattGEGómezCAHamiltonAB. (2013) The intersection of gender and ethnicity in HIV risk, interventions, and prevention. American Psychological Association68(4): 247–260.
