Phindile Sithole-Spong says she almost died three years ago. She has lived with HIV all her life as she was infected from her late mother who died when she was 8. But it was only when she was 19, after matric, that she discovered her own HIV-positive status on the 1st of September 2008. Incredibly sick at the time, she had a dramatically low CD 4 count of only 2. Phindi spent the next three months on a hospital bed. Outspokenly and with an incredible sense of humour, this 22 year-old young woman tells how she felt HIV stripped her of her sexuality at the time.
“I had hips, I had a bum, I had all of it… big boobs. And, then, all of a sudden I was like: ‘Oh, my Gosh! I can’t show this anymore. I can’t be a feminine, sexual being anymore. I felt like my body had betrayed me because it hadn’t shown any signs. And I did start to lose some weight, obviously, because I was very sick at the time”, Phindi says.
She says for a while after leaving hospital, she changed the way she dressed. She would wear hoodies and baggy clothes instead of the tight jeans and tops that would accentuate her bums and cleavage. For about a year and a half after her diagnosis she did not have a relationship or sex. When she eventually started having sex again, she would always cry after the act – but not out of pleasure.
“I felt guilt”, she says.
“Why am I having sex?” , Phindi wondered.
“Maybe, I should just stop having sex altogether because I’m going to hurt someone one day”, she would often say to herself.
“I would cry all the time. But the break-through point, actually, was when this one boyfriend of mine… We had sex and he said to me… Because I had told him that: ‘Sometimes I cry after sex, you know. It has nothing to do with you’. So, after sex he sits down with me, he brings a box of Kleenex and he’s like: ‘So, we’re going to cry now’. And I’m like: ‘No, actually. I’m fine with it’. He made me comfortable with who I was and my status and he was very accepting of it. And so, from then I started accepting it too”.
She says it’s important to be open about her status with every partner that she meets so that they can both be protected.
“Because of the implications of being HIV-positive… every single partner… I’m like: ‘Listen, I’m HIV-positive. If you’d like to talk to my doctor, here he is… here’s the information I have’. There’s an open dialogue”.
But is that before or after the sex?
“Oh, before the sex! Before we even get there!” , Phindi exclaims. “You should always tell your partner before you have sex. If someone knows what they’re getting themselves into, most of the time people are very understanding, and if he’s not understanding, then, too bad for him. He can go find someone else”, she adds with a she chuckle.
She admits, however, that she sometimes does get rejection because of this.
“A few times I have. But, funnily enough, only after the sex. So I felt a bit used. So, some relationships, we’d be together for months and, then, we’d have sex and a month or two later, someone would be like: ‘You know, I actually can’t deal with your status’. And it took a while for me to accept it and to be like: ‘This is going to happen, but it shouldn’t change who I am. I made a decision a long time ago that I was going to be open and honest’. I give people an option and if someone can’t accept my status, then they can’t accept me. It’s part of me. Yes, there has been some rejection. But there have also been some amazing relationships and some amazing friendships”.
Phindi says it was a lonely journey before she could reclaim her sexuality and be confident enough to have a boyfriend and to have sex.
“There was no one, really, that I could look up to or someone I could identify with who had been through what I was going through and who came out of it and was still having sex and was still a sexual being. And, also, the campaigns that I had seen had never really dealt with sex, so I thought, OK, maybe, it’s wrong to have sex if you’re HIV-positive. And, so, I was always fearful that: Would I infect someone?”, she says.
But with the help of her doctor and reading up on how HIV can be transmitted, she succeeded to overcome her fears. Now Phindi wants to help other women who have HIV with their own fears.
“We don’t feel pretty anymore. We don’t feel like ourselves. And so, I have this idea to run this project where women could come together and we can sort of give a workshop to help them reclaim their identity because a lot of the time when people are infected, their identity sort of goes away. You don’t know who you are anymore. You become lost”.
Called the “100 faces of HIV”, the aim is to re-brand the way HIV has been portrayed and will target people who are already HIV-infected.
“A lot of campaigns don’t deal with the people who are already infected. There is no face… There is no, ‘I’m HIV-positive and guess what? I look good and I’m still young and I’m still whatever I am’. So, I wanted faces, particularly because I wanted to put a face to the virus to say: ‘Look, there are people from different age groups, different races, who are HIV-positive and they’re beautiful and they’re successful and they can still be mothers and daughters. They’re not defined by their status’,” says Phindi.