The work of negotiating HIV as a chronic condition: a qualitative analysis

Abstract

Living with human immunodeficiency virus (HIV) in the industrialised world has for over a decade been conceptualised as living with a chronic illness. People living with HIV now are amongst the first to live and age with the virus. Drawing on a qualitative longitudinal study in a low-incidence area in a low-incidence country, this paper investigates the nuanced ways that people negotiate this condition. While it has been argued that HIV is a condition like any other chronic disease, our thematic analysis reveals some similarities and particularities around living with the condition. In comparing themselves to others with the condition, high levels of diversity of experience were identified that extended well beyond length of time from diagnosis. In comparing their illness with other illnesses, the location, for example, of their specialist service within a clinic for those with acute sexually transmitted diseases was identified as problematic. The work involved in maintaining a coherent sense of self in the face of existing and shifting challenges as a result of their infection was a second strong theme. The final theme involved flux and flex work in the ways people sought to gain and maintain control over various aspects of their lives. All of these experiences are mediated by place; that is the experience is not the same as that of those who live where there is a much higher incidence of infection. The work involved in negotiating this condition in low-incidence environments deserves more attention, but aspects of these findings are significant in higher incidence contexts as well; in particular, passivity in face of infection as one ages and the potential for medication refusal as a means of maintaining control over life and death.

“I don't want to look like an AIDS victim”: A New Zealand case study of facial lipoatrophy

“…All participants experienced stigma, particularly around the challenges to disclosure of their HIV status to potential partners and employers, as well as their interactions with healthcare workers (Brinsdon, Abel, & Desrosiers, ). HIV was described as just another chronic disease (Thompson & Abel, ). Those diagnosed prior to the arrival of ARTs were faced with the challenge of learning to live when they had previously been dealt a death sentence.…”

“…Those diagnosed prior to the arrival of ARTs were faced with the challenge of learning to live when they had previously been dealt a death sentence. Many of the older men focused on the growing invisibility of the ageing gay body (Thompson & Abel, ). While some talked of their problems with lipodystrophy, none experienced this with the same intensity as Tom.…”

From activism to secrecy: Contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014

“…In our study, most respondents after generation 1 had stayed away from support groups, concealed their status from their social networks and kept HIV‐related matters separate even from other parts of their own life. In demonstrating their comfortable grasp of biomedical measures of immune status and therapeutic developments, study participants were enacting what Thompson and Abel describe as the “domestication” of the disease . However, unlike many other chronic diseases, the need for secrecy was crucial, and the normalization of life with HIV rested on a strategy of concealment, a strategy that was reported more than 20 years ago, “…secrecy is the central way of managing everyday life for one's self and for others.…”

HIV Diagnosis as Both Biographical Disruption and Biographical Reinforcement: Experiences of HIV Diagnoses Among Recently Diagnosed People Living With HIV

“…Wouters and De Wet (2016) argue, however, that receiving an HIV diagnosis is not always necessarily the singular most disruptive event in the lives of people living with HIV. Similarly, Thompson and Abel (2016) caution against readings of chronic illness as biographical disruption that overstate diagnoses as occurring against stable, pre-existing life trajectories. For participants who were residing in Australia on a temporary visa, for example, their potential to remain in Australia was not guaranteed and instead relied to some extent on bureaucratic policies outside of their control.…”