Identity and the body: Narrative accounts of two HIV-positive women with lipodystrophy in post-apartheid South Africa

Abstract

South Africa has the highest number of HIV-positive people in the world and also boasts the most comprehensive antiretroviral treatment (ART) programme to date. Long-term ART adherence requires a range of identity negotiations in order for treatment success to materialise in the long term. However, some patients on ART develop a treatment side effect known as ‘lipodystrophy’, which is a condition that can severely undermine a person’s sense of self and identity given the bodily alterations that take place given notions of anticipated, felt or internalised stigma. In this article, we explore two women’s narratives who suffer from this side effect of ART. Their narratives are used as an ‘instrumental case study’ inasmuch as these instances provide insights into their contextual realities of being on ART in post-apartheid South Africa. Both these women are black African, have limited means and resources, and already face serious everyday challenges despite their HIV infection and lipodystrophy. We subsequently conclude that this embodied experience is a reflection of individual and social realities of multiple layers of precarity that characterise the HIV/AIDS and ART landscape in South Africa. The article also emphasises the corporeal aspects of chronic disease that has not been amply studied in the context of HIV and ART, especially in developing countries where HIV infection is disproportionately high. Moreover, studying lipodystrophy interpretatively has also been largely neglected.