Abstract
The experience of living with HIV, in the global north, has changed significantly over the past 20 years. This is largely the result of effective biomedical methods of treatment and prevention. HIV is now widely considered to be a long-term condition like many others - it has been argued that HIV has been 'normalised'. Drawing on online qualitative survey data, with respondents aged 18-35 years, diagnosed with HIV in the past 5 years, this research explores contemporary subjective experiences of being diagnosed, and living, with HIV in the United Kingdom. The data reveal ambiguous experiences and expectations, as the 'normative' status of HIV exists alongside ongoing experiences of fear, shame and stigma - maintaining its status as the most 'social' of diseases. In rendering HIV 'everyday', the space to articulate (and experience) the 'difference' which attaches to the virus has contracted, making it difficult to express ambivalence and fear in the face of a positive, largely biomedical, discourse. In this article, the concepts of normalisation and chronicity provide an analytical framework through which to explore the complexity of the 'sick role' and 'illness work' in HIV.
Highlights
In ‘When Plagues End’, published almost 20 years ago, Sullivan (1998) reflects on ‘normalcy’ and ‘the ebbing of AIDS’ in the immediate aftermath of ‘the good news from the Health 23(1)laboratory’ – the increasingly effective, life-altering, introduction of combination antiretroviral drugs in the mid-1990s (p. 79)
The work centres on the primary question: Is living with HIV different and in what ways? Related objectives consider the ways in which HIV is ‘normalised’, how it is increasingly perceived and experienced as a long-term chronic condition (LTC) and its ongoing legacies
The question which framed this research was: Is living with HIV in the United Kingdom different in a contemporary context, and, if so, how? The results of this research project indicate, perhaps unsurprisingly and in line with other research, that it is both significantly different, yet frustratingly similar – the data suggest that it is characterised by a combination of complexity and confidence though remains, for many, underpinned by past legacies of fear, distress and stigmatisation
Summary
In ‘When Plagues End’, published almost 20 years ago, Sullivan (1998) reflects on ‘normalcy’ and ‘the ebbing of AIDS’ in the immediate aftermath of ‘the good news from the Health 23(1)laboratory’ – the increasingly effective, life-altering, introduction of combination antiretroviral drugs in the mid-1990s (p. 79). The possibilities for life, and survival, changed what it meant to live with HIV and AIDS. Living, he commented, ‘is about the place where the plague can’t get you ... The experiences of the contemporary generation of people living with HIV might be as different from those reflected in Sullivan’s work as the generation he refers to was different from the preceding one. My key objective is to understand contemporary experiences of young people in the United Kingdom living with HIV. Related objectives consider the ways in which HIV is ‘normalised’, how it is increasingly perceived and experienced as a long-term chronic condition (LTC) and its ongoing legacies The work centres on the primary question: Is living with HIV different and in what ways? Related objectives consider the ways in which HIV is ‘normalised’, how it is increasingly perceived and experienced as a long-term chronic condition (LTC) and its ongoing legacies
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