‘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.

Social Support Networks of People Recently Diagnosed with HIV in Queensland: A Qualitative Exploration

“…The findings presented in this chapter demonstrate that peer networks in Queensland are an important resource that must be valued, supported and promoted. In the chronic disease era, persisting HIV-related stigma, isolation and the increasingly individualised experience of living with HIV, have the potential to limit recently diagnosed PLHIV perceptions of the support available to them (Moyer & Hardon, 2014;Rai et al, 2018;Walker, 2019). Yet the findings presented here demonstrate that there are peer supporters in Queensland who are willing to speak up, to make themselves available, and to share their experiences as a means of supporting and educating others.…”

“…This is because the continuum is constructed from a provider point of view, rather than by those living with HIV (Christopoulos, Massey, Lopez, Geng, et al, 2013). Living with chronic conditions, including HIV, involves uncertainty and variability, even for those who adopt healthy behaviours and adhere to treatment regimens (Greenhalgh, 2009;Moyer & Hardon, 2014;Walker, 2019;Webel et al, 2013). Qualitative studies continue to demonstrate that the social lives of PLHIV underpin their successful navigation of the HIV care continuum and efforts to self-manage health (McDonald et al, 2016;Webel et al, 2013;Webel et al, 2012).…”

“…Knowledge and understanding of HIV have decreased in the general community in recent years, with no widespread health promotion campaigns in Australia and little coverage of treatment advances in mainstream media (Newman, Persson, & Ellard, 2006;Walker, 2019 (Cohen, 2011). By 2015, the early initiation of ART became a universal treatment and prevention policy (World Health Organization, 2016).…”

“…Peers lived experience of HIV placed them in a unique position to support everyday life and biographical work. Peers understood the ongoing nature or chronicity of living with HIV (Walker, 2019). Participants often identified peers as the people with whom they could engage in unfiltered conversations, which was not always possible among family and friends.…”

“…Social networks have played an essential role in supporting self-management and improving health outcomes for people living with chronic conditions Vassilev, Rogers, Kennedy, & Koetsenruijter, 2014). Yet little is known of recently diagnosed PLHIV experiences of seeking and mobilising network support following HIV diagnosis, particularly within the context of the stigma that continues to surround HIV (Rai, Bruton, Day, & Ward, 2018;Squire, 2015;Walker, 2019). Drawing on the findings of a multi-phase qualitative study, this thesis examines recently diagnosed PLHIV experiences of receiving social support following HIV diagnosis and highlights the characteristics, role and evolution of their social support networks during this pivotal period.…”