“I never wanted to gain so much weight. All I wanted to do was to make people stop calling me bad names because I am HIV positive,” said Emmerancia Mndawe.

When Mndawe fell ill and lost a considerable amount of weight people in her neighbourhood speculated about the reasons behind her weight loss, and some even told her she has ingculazi — a slang word for HIV.

“When people in my community hear you’re seriously ill, they already diagnose you. It’s like we’re living amongst experts of diseases and chronic illnesses,” Mndawe told Health-e News.

She suspected she may be HIV-positive, but it took a while before she went for a test.

Speaking on Tuesday at the ninth annual South Africa Aids Conference in Durban, Professor Francois Venter, the deputy executive director of the Wits Reproductive Health Institute, said there is a massive benefit to starting antiretrovirals (ARVs) early. “But the problem in South Africa — in fact, anywhere in the world — is that patients that come in late [for treatment] have low CD4 counts,” he said.

“We need to find out why patients are coming late. Is it denial? Is it the lack of friendly staff? Who are those people who are not availing themselves for treatment? It’s not a South African problem, it’s a human problem. There must be something psychological happening here,” he said.

It was the fear of stigmatisation that prevented Mndawe from going for an HIV test.

Mndawe soon developed severe oral thrush — a fungal infection in the mouth or throat, which according to research, is one of the earliest manifestations of HIV infection. Her mother begged her to eat, but Mncwande couldn’t swallow any food.

HIV stigma and weight

That is when she realised that she had to get tested, and discovered she was HIV-positive. “I started ARV treatment immediately and the nurse gave me medication for TB and the oral thrush,” she said.

But Mndawe weight loss was still an issue for her — even after starting treatment. She wanted people to stop gossiping about her HIV status. South African women — especially black women — associate being thin with illness, specifically HIV, a 2011 study published in the South African Journal of Clinical Nutrition found.  According to the research, black South African women were not motivated to exercise because they fear that losing weight would increase their chances of being stigmatised as HIV-positive.

“We’ve seen in our research that weight perception is cultural,” said Venter.  “Some patients have complained about having to buy new clothing, which can be a problem for poor communities.”

Mndawe told Health-e News that people stopped suspecting that she was HIV-positive when she started gaining weight after a few months of being on treatment. “I told them I used diet pills and syrups and I’ve picked up weight again because I stopped. I don’t care if they believe me or not, because gaining this weight stopped them from saying I have ingculazi.

HIV and non-communicable diseases

Maria Khoza, a Mpumalanga-based nurse, has heard of HIV-positive patients that intentionally gain weight because they’ve been discriminated against because of their status. “That’s why we always encourage acceptance and the importance of joining a support group of people who are also infected or affected with HIV,” she explained.

Khoza said those patients weren’t aware that being overweight or obese can cause serious health complications like high blood pressure, diabetes and high cholesterol.

South Africa has the largest HIV population across the globe and is the most obese and overweight nation on the African continent. But there’s still little information about the relationship between HIV and non-communicable diseases (NCDs).

According to Venter, hypertension is the second greatest co-morbidity for HIV after tuberculosis. Hypertension can lead to heart attacks and strokes.

Mndawe said she wasn’t aware that gaining weight could be bad for her health. “I now have high blood pressure and had two minor strokes in January. My doctor advised me to change my diet so I can lose weight,” she said.

But she’s afraid that losing weight would get people in her community talking again. At the same time, she’s now being shamed for being too big.

“I really don’t know what people want from me anymore. They gossiped about me when I lost weight. And now they’re asking me when am I due because I have a big, big belly. I just want to give up,” she said. – Health-e News

An edited version of this story was also published in IOL