‘It’s like I have this weird superpower’: experiences of detectable and undetectable viral load among a cohort of recently diagnosed people living with HIV

Abstract

Background By reducing HIV viral load to undetectable levels, HIV treatment slows disease progression and eliminates the possibility of sexual transmission. The promotion of undetectable viral load has also been accompanied by expectations of reducing HIV-related stigma, including self-stigma. Drawing on accounts of people recently diagnosed with HIV, we explored experiences of both detectable and undetectable viral load. Methods Between January 2019 and November 2021, semi-structured interviews were conducted with 35 people living with HIV (PLHIV) who had received an HIV diagnosis in Australia from 2016 onward. Of these participants, 24 completed follow-up interviews approximately 12 months later. Interviews were transcribed verbatim, entered into NVivo (software v12), and thematically analysed. Results Reflecting on the period in which their viral load was detectable, some participants described feeling ‘dirty,’ ‘viral,’ and ‘a risk’ to sexual partners. During this period, some participants minimised or ceased having sex, sometimes despite being in ongoing romantic relationships. Reaching undetectable viral load was commonly characterised as an important goal in HIV care and signalled a marker of good health and enabled a return to sexual relationships. However, the psychosocial benefits of undetectable viral load were not universally experienced, with some participants highlighting ongoing challenges of living with HIV long term. Conclusions Increasing awareness of the benefits of undetectable viral load is an important and powerful tool for improving the health and wellbeing of PLHIV; however, the period in which one’s HIV viral load is detectable can be challenging, particularly as feelings of being ‘unclean’ and ‘a risk’ may be internalised. Ensuring PLHIV are appropriately supported during periods of viral detectability is necessary.