It’s a Saturday afternoon and the sun is blazing. Leonora Mathe, 27, ushers us into her aunt’s home in Vosloorus, on the East Rand of Gauteng. A few houses away, R&B blares from an open car boot.
Mathe grabs a chair in the dining room and sits, leaning her elbows on the round wooden dining table close to the window. She shares her experiences of having lived with HIV for 27 years.
“Back then, in the 1990s, it was bad. Even having friends was difficult,” Mathe says, recalling how life was for her as a little girl living with HIV in Soweto, Johannesburg.
Mathe was born with HIV. She was on antiretroviral (ARV) treatment as early as six years old. Mathe’s grandmother collected the medication for her, without telling her it was for HIV. “My grandmother would just say [you are taking] medication for asthma,” she recalls.
Mathe says that after receiving the news about her HIV status in her early high school years, it didn’t overwhelm her emotionally because she had lived with an HIV-positive mother and, at the age of five, lost her father to an AIDS-related illness.
Then, stigma and fear around HIV were extensive, she says. “As a child, [I] couldn’t understand why other children don’t come and play at your house. It’s only at a later stage when I realised that it was stigma.”
She took ARVs consistently. It was her mother’s state of health and drastic weight loss that impelled her grandmother to keep track of Mathe’s daily ARV intake.
“When my mom started being sick, I witnessed her from being a normal healthy person to that skeleton body. For me, taking that medication was like me safeguarding myself, and that I don’t want to be a skeleton body. So it was the trauma that kept me going,” she says.
Although Mathe has a partner and two-year-old child, she says dating while HIV-positive is challenging. “A lot of times when people look at HIV, they think you’ve had unprotected sex. But there are many ways of contracting HIV.”
Learning to live with HIV
Mpho Mbeki, 31, was diagnosed with HIV in 2007, when she was a first-year student at Walter Sisulu University in the Eastern Cape. Unlike Mathe, Mbeki was crushed when her results came back positive.
She grew up in Butterworth and found out her status when she accompanied a friend to the clinic and decided to get tested as well. When her results came back positive, she was in disbelief because she was young and therefore thought it impossible to have the virus, she says.
“I think we did three tests that day and they all came back positive. It changed everything for a moment. It was bad, I froze for a couple of minutes. I was only with one guy [who was in his early 40s] and he was the only one I’d been with since I started dating.”
Mbeki says it took her three years to accept her status and that she will be on treatment for the rest of her life. She adds that after coming to terms with her status, she decided to take time before disclosing it. “I wasn’t ready for that and I was afraid. It took another year for me to actually tell my parents.
“My mother was shattered, and afraid, because when you say HIV, the first thing that comes into people’s mind is [fear] that you will die. My dad wanted to be strong for me, but I could see that they were disturbed,” she says.
Mbeki decided to tell her parents as she was worried they might hear about her status from others first. She didn’t rush to tell her family straight away because she had to process the news first. “I had to deal with me first, my emotions and state of mind. I knew that I would be able to handle them.” Not all her family members are empathetic though, because she had dated an older man.
Mbeki say that developing a good mental attitude while HIV-positive took time. “It was a process. It is still a process, even now. But one knows how to handle it.”
‘Never looked back’
It was only in 2014 that Mbeki started her ARV treatment. “During the time [of diagnosis], ARVs were not given. They looked at one’s CD4 count … After taking my treatment, I felt lighter and stronger than before. It actually took me a week to feel the difference. I’ve never looked back since.
“Now I have gained weight, I no longer feel feverish, or headaches. My body was deteriorating and I wasn’t aware, I refused to be aware of it.” She says the ultimate gift of being on treatment is that her son is HIV-negative.
With such positive effects, she encourages those living with HIV to take their treatment early. “Starting treatment early is the best. They [ARVs] work magic. There are side-effects, of course, but they will pass.”
Mbeki’s status did not stop her from fulfilling her dreams. She completed her national certificate in versatile broadcasting in 2012 and works for the TB HIV Care programme.
She says her decision to live publicly with HIV is based on a fear of other young girls being exposed to HIV unknowingly, and being taken advantage of by older men.
“I got infected by an older man. I guess I was stupid or not careful enough to allow him to do that. He had money and everything, he gave me a life that I never dreamed I could live … yet they give you this permanent thing that won’t go away.”
Eight years of HIV
In Tsakane, Ekurhuleni, Gugu Xaba, 27, walks us through the kitchen and into the sitting room. She sits on a three-seater leather couch covered in pink crocheted doilies. Xaba tells us why she decided to get tested and how that decision changed her life.
When she heard rumours about her ex-boyfriend collecting ARVs at a local clinic in 2012, she was unsettled and went to get tested. The results came back positive. “The first thing that came to mind was death,” Xaba says.
“I thought about a lot of things, one being rejection. I thought my mom was going to reject me because I am HIV positive. Fortunately, my mom is understanding. She told me everything is going to be okay.
“Because I was working in the hospitality industry, I was thinking I was going to lose my job because some companies don’t want people living with HIV.”
Xaba says she didn’t use protection and knows that this made it possible for her to contract HIV.
A year after disclosing her status to her mother, Xaba went on a live television talk show and disclosed her status publicly. She says that brave decision came with a barrage of discrimination, especially from her neighbours. “Sometimes you could tell that they [her neighbours] were talking about me. I didn’t care, but sometimes it hurts. I wanted to live my life with no fear.”
Like others living with HIV, dating is not easy for Xaba. She says her boyfriend understands HIV and how it works. “My partner is HIV-negative. Some people are scared, we don’t blame them, they don’t have much information on HIV.”
She has joined several support groups and non-governmental organisations that have increased her knowledge about the virus. She now raises awareness about HIV and shares her story in schools and communities.
She admits that living with HIV is not easy. “Even though people see you disclosing your status and think it is an easy journey, it is not.”
Fighting the stigma
Mathe, Mbeki and Xaba have concerns around the stigma surrounding HIV and the treatment of those living with the virus.
“The green cards that you use to get your medication at clinics is stigmatising. People know that the green cards are for those living with HIV. Sometimes people are ashamed of taking out their green cards,” Xaba says.
She says some clinics have allocated queues especially reserved for ARV collection.
Mbeki says sometimes medical practitioners perpetuate the stigma. “They should try and just be human about HIV.”
Every day should be AIDS Day
Mathe has joined the Treatment Action Campaign (TAC) and She Conquers, to raise awareness about HIV and AIDS. She does not celebrate World AIDS Day. On 1 December each year, people all over the world unify to fight against HIV and AIDS and show their support to those living with and those who have died from the virus.
Mathe says the current state of public healthcare has left HIV patients with a shortage of drugs. “Why go to big stadiums and hire security [AIDS Day events] when that money can be used to get more medicine?”
She has conducted talks with those giving care to HIV patients in the hope of raising awareness. “We are fighting stigma from outside, and yet we are getting that from the very same place where we are supposed to be getting help from. They should not be harsh about it. When a person is asking for condoms, they should not be yelled at. They should easily get access to the services without being made fun of,” says Mbeki.
The South African Department of Health has improved its ARV treatment since Mathe, Mbeki and Xaba were first tested. On 27 November, the department launched Dolutegravir, a three-in-one HIV pill. It is being touted as a game-changer, as it has fewer side-effects and can be taken without having to first eat a meal.