HIV and tuberculosis: The construction and management of double stigma

Mitigation of the tuberculosis (TB) and HIV syndemic is undermined by critical clinical, operational and social challenges of which the social aspects have been least explored. This paper examines the lived experience of TB disease and HIV from the perspective of affected individuals to analyze how they may think about their dual illness; how they understand their illness with TB in relation to HIV, and vice versa; and how they characterize their (stigmatized) experiences in the context of their perceptions and identities. From February–August 2009, qualitative, semi-structured interviews were conducted with 40 adults with HIV and TB disease at three ambulatory clinics in KwaZulu-Natal, South Africa. Subjective meanings of illness experience were analyzed using modified grounded-theory. Emergent themes on illness perception and disclosure revealed how patients constructed dichotomous identities associated with TB and HIV through social constructs of moral susceptibility and (im)permanence. Each identity was associated with relatively disparate degrees of stigma as a product of labeling, negative stereotyping and discrimination. HIV bore the least desirable identity and invoked the greatest stigma. However, the confluence of the two epidemics rendered TB symbolic and symptomatic of HIV, and enhanced the visibility of AIDS. Dual illness thus introduced a paradox to patients' identity constructions, and produced a unique, overlapping double stigma. This facilitated new forms of stigma against TB, and aggravated existing stigma against HIV. It also conferred visibility to some forms of extra-pulmonary TB. Patients managed their double stigmas through novel forms of information sharing that relied on segregating their dual illness identities. Patients deflected the dominant stigma of HIV through concurrent processes of HIV ‘othering’ – their symbolic distancing from persons affected by HIV, and ‘covering’ – their selective disclosure of illness (and identity associated) with TB over that of HIV. Findings call for greater consideration to the complex role of stigma in the delivery of TB/HIV healthcare.