HIV is the most common chronic illness in South Africa. One in every five is infected and one in every 13 takes antiretroviral drugs daily. Managing HIV medically has become more of a part of normal life.
Amid this public health emergency, some 2.5 million foreign-born African immigrants live in South Africa. They largely come from countries with the highest HIV prevalence rates in the world, such as Lesotho. Yet their access to health care and services is limited, because they are vulnerable in various ways. Though entitled to inclusion and care in South Africa, they may face deportation, xenophobia, exploitation, language barriers, cultural estrangement and social isolation.
In spite of these challenges, migrants do manage HIV medically. But we do not really know how they manage socially in communities where the stigma of the disease affects all dimensions of life. HIV is often referred to today as a “manageable” chronic illness, but it is not just a medical condition. It is also very much a social condition as living with HIV comprises both clinical features of care and experiences of stigma and social angst.
Understanding how migrants manage this social dimension of their condition matters because it shapes the landscapes and outcomes of their care. It directly influences when and where people seek treatment, and how well they adhere to it if they do. This in turn affects critical issues such as drug resistance and prevention of transmission.
In a recent journal article, I unravel complexities of stigma and perceptions of HIV in Mozambican migrant communities. My research exposes layers and shades of stigma across different social networks and locations, which influence how HIV is managed socially. It shows how an individual’s HIV status determines how other community members are regarded and interacted with in daily life.
Nowhere in South Africa is the migrant population as dense as in inner-city Johannesburg. In their urban enclaves, community members inevitably lead lives entwined with those of people receiving care for HIV, whether aware of their infection or not.
HIV is spoken of here in ways that acknowledge, perpetuate and replicate stigma. For instance, Mozambicans may allude to HIV as “stepping on the mine”, as “being poisoned” or as “getting stung”. Open conversation about HIV is avoided, which in turn creates an anxiety that motivates secrecy. This is so because disclosure of HIV serostatus may put social life at risk.
I explore perceptions of HIV among two groups of Mozambican migrants in Johannesburg: one consisting of patients receiving care for HIV in a hospital; and the other of community members unaware of their own serostatus.
The contrast between how these two groups perceive of each other is staggering. The patients apprehensively conceal their status for fear of what others might think of them. But these others express mostly empathy and understanding for their condition.
I identify two reasons for such stark perceptual contrasts. The first lies in a transformation of identity, which results in a division between an “us” and a “them”, between the HIV-positive and the HIV-negative.
This process creates a schism between “patienthood” and “personhood”. When a person tests positive for HIV, fears of physical death in the future transform into fears of social disruption in the present. Loneliness and isolation then result from the person keeping her HIV status secret.
As the identity of a community member shifts from personhood to patienthood, as she receives counselling and care, she comes to associate disclosure with her own (and others’) social death. Her serostatus then becomes a secret in her life, while her notion of others’ perceptions of HIV becomes confined to the realm of the suspected and nervously anticipated. Expecting social misfortunes should others learn of her status, she opts for concealment as a strategy of survival in the community.
Secondly, I find that stigma is tied to location, because of the ways in which location is tied to social networks. In different social networks such as family at home, friends, work colleagues, acquaintances in the community or the nightlife, the stakes of disclosure vary considerably.
For instance, one focal point of stigma is the local HIV clinic. It is supposed to care for its patients, but at the same time it also estranges them, because others might recognise them there and so become antagonists rather than fellow patients.
In fact, Mozambicans largely prefer to avoid clinics in South Africa and go home to Mozambique for treatment. The stakes of disclosure, involving livelihoods, partners and identities, are far too high to risk being seen receiving care in South Africa. Disclosure may be less hurtful in certain locations where social networks are more sympathetic.
This may further complicate the therapeutic journey of migrants in terms of costs, retention in treatment or simply having to explain away the true purpose of one’s absence.
HIV may have become easier to manage medically, but stigma continues to cause distress and remains severely challenging to manage. This is also a challenge for health care provision, as it sways choices of when and where to seek care: a South African clinic, for example, or a distant, socially safer treatment option.
HIV may have been medicalised, yes, but not socialised.