Internalised stigma, in the age of undetectability

L Thorley Stigma Index 2015 FPA, London, UK Justification for this research: In the age of undetectability and wide usage of ART, the 2015 Stigma Index indicates that stigma – felt, anticipated, or enacted – remains a persist feature in the lives of almost half of the people living with an HIV diagnosis. This is often internalised and manifests through feelings of guilt, self-blame, low self-esteem and shame. As a result, the quality of life for people who are living with HIV (PLWHIV) is negatively affected. This research, which is a continuation of the quantitative data formulated by the 2015 Stigma Index, aimed to ask why people who are living with HIV experience stigma in this way.

Methods employed: 40 semi-structured interviews were carried out with a representative sample in relation to geographical location, gender, ethnicity, and sexuality. Interviewees came from a sample of people who had previously completed the online 2015 Stigma Index survey. Interviews were conducted either in person, viva skype or over the phone. The researcher who conducted these interviews is HIV positive which afforded her a degree of insider status and shared experience with interviewees. The methods employed in the analyses of the data were pre-determined themes and inductive analyses.

Findings: This research found that felt, anticipated or enacted stigma is a complex process. It varies over time and is manifested in various situations, ranging from disclosing status to a new partner to discussing diagnosis with healthcare professionals. Those who live in rural areas where there are limited services are more likely to experience feelings of isolation and anticipated stigma. The research indicated a lack of awareness amongst PLWHIV about what it means to be undetectable, insofar as many were unaware of the partner study. Sometimes this was because of a lack of interaction with the sector, whilst other times consultants were failing to inform patients of new developments. Furthermore, the findings demonstrate a general sense of frustration amongst the HIV+ community, about general levels of ignorance related to conceptions of what it means to live with HIV in the contemporary era.

Conclusions: This research demonstrates that PLWHIV are still experiencing stigma, even in the era of undetectability and wide ART usage. PLWHIV are fearful that they will be judged for having a sexually transmitted illness. Furthermore, this research clearly shows that if the general public were aware of what it means to be living with HIV, then those who have HIV would experience less stigma. This research has the possibility to not only influence how voluntary organisations address the needs of those living with HIV, but also to inform national policy. It also proposes that there should be a unifying voice from the medical community when discussing what it means to be undetectable.