‘There’s no pill to help you deal with the guilt and shame’: Contemporary experiences of HIV in the United Kingdom

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.