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'Let Me Be Quiet': The Dilemma of HIV Disclosure

Year: 2010
Working paper number: 271
Author: Haricharan, Hanne Jensen
Unit: ASRU

This paper argues for a differentiated approach to understanding disclosure of HIV status in a South African township. It suggests that there are two models of disclosure: partial and full. There are benefits for PLHA in both forms of disclosure resulting in improved health and well-being. Disclosure can also play a role in prevention as it can facilitate initiation of safe sex practices. However, the benefits are limited in the partial disclosure as there are challenges related to health-seeking behaviour, stress release and initiation of safe-sex practices. The paper describes partial disclosure as a dilemma between, on one hand, feeling free from secrecy, improved health and well-being and being able to solicit support, and on the other, fear of stigma and discrimination. It argues that a crucial aspect in the choice between partial and full disclosure is how PLHA deal with stigma and self-stigmatisation, related to a conceptualisation of HIV as a disease the bearers bring unto themselves through 'immoral' behaviour. It suggests that those who chose partial disclosure dealt with stigma through managing their disclosure by seeking out people who were unlikely to stigmatise and likely to be supportive. They dealt with self-stigma through 'insisting on innocence', repositioning themselves within the 'guilty'/'innocent' binary as 'innocent' without challenging the discourse of illness as personal responsibility. For the majority of those who disclosed fully, disclosure was experienced as a dilemma in the same way as for those who disclosed partially. In these cases, the dilemma was resolved by confronting stigma and refuting the stigmatising discourses that link HIV with personal responsibility and morality. Some informants who disclosed fully shortly after the diagnosis did not experience self-stigma and did not fear external stigma because they did not associate HIV with personal responsibility. Finally, this paper concludes that improved disclosure rates as well as a change from partial to a more inclusive or full disclosure is essential to realise the full benefits of disclosure, a change that is linked to challenging the conceptualisation of HIV as a condition linked to personal responsibility and 'immorality'.

Publication file: WP271.pdf