Sylvia became pregnant aged 16 and left school early. In 2001 she married and had a son. But the following year he developed a skin rash and tested positive for HIV. Sylvia was diagnosed with HIV the same day.
Her husband’s ex-girlfriend died of full-blown AIDS a month later. To start with, Sylvia “did put a lot of the blame” on her husband. But “time passed and I started to forgive him and now we are close again”. Her son is still healthy and her family plays a supportive role.
Sylvia’s emotional recovery was greatly helped by her hospital counsellor. TAC has also made a “big change” in her life: “I start to be open about my status”. She applauds TAC’s efforts to lobby the government, which she says should do more to provide antiretrovirals. She now goes door-to-door, advising couples to know their status and to stay together.
I grew up as a very privileged person. My parents were strict but they brought me up good. I went to school when I was seven, but I was very naughty and I didn’t like school my first year but I had a very good childhood, because my parents were always there for me. We did understand each other really well. I’ve got one brother and two sisters. My parents are still alive and at the moment they are living on their pension.
I am married and I live with my husband and my one son. I was in Standard 8 the last year at school; I was about 16 and I couldn’t finish school because I became pregnant. It was very very hard for me because I wanted to go back to school after the birth of the baby, but my parents didn’t want that because it was shaming for them.
It was really tough for me because I was so young and I’m pregnant and now I’m disappointing my parents and I’m not going to finish my school year… After the baby was born, they were very supportive and [have been] until now. I never told them that I wanted to go back to school, because I knew they would say no, because it was embarrassing for them.
A year after the baby I went to work at a bank in Cape Town and worked there for three to four years. My boyfriend and I were having a good relationship… so much in love. When I got pregnant his parents let him finish school, but the relationship was good. But a few months after the birth of the baby we didn’t see each other any more, everything changed. [His being able to complete his education] did have an effect on me because I was saying: how can he finish his schooling, but I must sit with the baby and I can’t do anything?
Testing positive for HIV
In 2002 I was tested for HIV/AIDS. My son was tested first. My son was about one year and six months at that time, and he had a very very bad skin rash, and was in hospital for weeks. He got blisters on top of eczema and one day this doctor came and asked me if they can take a blood sample to see [why] his skin didn’t heal. It worsened and worsened by the day, so I agreed the doctor must draw blood so that they can know what is going on, but we didn’t discuss any HIV test.
I did have in my mind that my son might be HIV [positive] or whatever and after two weeks, we went back for the result and I was so anxious… and we saw another doctor and he gave me the result just like that – without any counselling. I didn’t realise at first what he’d told me and I said yes. He asked me, did you hear what I said? I said, can you please say it again?
And that time I realised what he was saying and I was so emotionally confused. I said: ‘I want you to test me right now’. And [they phoned] my son’s doctor and she said to the people at the hospital she didn’t want me to go home unless they gave me a very very good counsellor because I was so emotional and I was crying. My son was also crying.
The counsellor came and they did a rapid test. I was waiting for 10-15 minutes and my result was positive and at that moment I was just thinking about what will my family say and what is going to happen. But the counsellor counselled me and I am still with that counsellor today, because she is very good.
[So] my son and I, we are HIV positive … now what? At that moment I said to my son – he was about one year and six months – I said to him, forgive me. I said to him over and over again, forgive me. I was so emotional I didn’t know what to say and in my mind I was like – we’re gonna die. Because I knew nothing about HIV… but as the counsellor talked to me, she explained and I realised that I… was very angry… but I am not gonna die today. I can still go on, you see, I can still move forward but when will I die? When will it happen?
You know, there were sometimes when I was just sitting, I didn’t want anything to do with my husband or with any family member. I was just seeing my funeral, seeing my funeral in front of me – and my son’s funeral. Sometimes I asked the Lord, why did he do this to me? Why not to someone else? And I had to go on, you see – it is not something that happens today and goes away tomorrow. It stays with you.
From anger to acceptance
The counsellor asked me if I was going to tell my husband. I said to her, No! I want nothing to do with him. She must come with me to my house, to tell him about this. When we got home she took him for a drive and told him. I didn’t talk to him for a long, long time. I couldn’t even look at him. I was thinking that at that time we were married only for a year, not even a whole year because we got married in 2001 and we got tested at nearly the end of 2001. I was thinking how could this happen you know? How this is possible?
I had a five year-old daughter – not my husband’s child – and I took her [for testing] and two times the test came out negative. There’s nothing wrong with her and a month after me and my son were tested, the lady that my husband had [before], she died of full blown AIDS. Then he realised what had gone wrong and what he had done, you know.
I did put a lot of the blame on him but after a while I accepted it. I said to myself I can’t blame him for the rest of my life, I have to go on for the sake of my children, you know! And for the sake of me as a woman, I have to go on. And so time passed and I started to forgive him and now we are close again.
Family life recovers
We’ve been married for five years now… a few months after I was tested we were intimate again. I told him he must use a condom and he did understand that and we have been using condoms until now and we don’t have any problem with that, but at first it was a problem to me, because I didn’t want anything to do with [sex] but now it’s alright.
[In my family] I told my baby sister first and then my brother and then I told my mother. So now everybody knows and they are very supportive. My son is five years-old now and he is very very healthy and he doesn’t have skin rashes any more. He is in pre-school at the moment but for the time being he is visiting my mom and doing very very well and he is going to school next year.
TAC brings positive change
A few weeks [after diagnosis] the counsellor invited me to a support session and at that group session I started talking about myself. I start to be open about my status, but I couldn’t open up to my husband because I was too cross with him. I hated him at that time – so much I could kill him. There was a certain lady there and after the group session was finished, she told me about TAC and asked me if I would like to visit them.
We went to the meeting and after a month or so the people from the provincial office phoned me and said I could go to a training. After the training, I realised what this is all about. I learned so much about my status – because I didn’t know anything about HIV and I learned so much and that is the reason why I joined TAC.
The main aim of TAC is to help people who are infected with HIV and AIDS so that the government can provide ARV for everybody infected, because the government is not doing enough for our people and they are dying day by day without ARV. We also provide education about HIV so that people can know what is going on and how we can help them prevent becoming infected.
TAC did make a big change in my life, because before I felt like I am not good enough to do anything, you know – because I am HIV positive and how can I do this and that? But after I went for my first training… and there was one lady, she really motivated me a lot, always saying to me: ‘I know you can do that’. And I said to myself, if she says that, I know I can do that – I can overcome a lot of this.
And since I joined TAC my life changed a lot, I am more focused in life and I am more open about my status. I am going public about my status. I can talk in front of whole groups of people and in that way I think I can help people who are HIV positive, specially married couples.
Spreading the word; talking to married couples
[TAC encourages people to come to their centre] by having events that people can come too and sometimes – they get a lot of funding from many places and people get together and discuss a lot of issues.
Once a week, I go door-to-door visiting people, specially married couples, to talk to them. I always make married couples my priority, because, um, this can easily destroy a marriage – when you know you’re HIV positive – and specially when there’s children involved, I always tell people, rather stay together. Don’t leave each other because you will just make a big mistake. So, I always focus on married couples, wherever I go.
In the beginning [people weren’t] so good. Sometimes people said, No! I don’t want to listen, I don’t have time. But since I was more open about my status, the more they want to know. They ask for handouts, pamphlets, they ask for books they can read and things just went very very well.
Yes, people do [come to me because they want to know their status] and I can always refer them to my support group: we do counselling and testing. I am so happy because there are many times where couples come to me and go for testing and they are HIV negative. But I can always encourage them to come back after three months or so for testing. I am very lucky too because many many young couples come to me asking for information and I can give them it for free.
‘We want the government to bring about change’
In my opinion the government is not supportive enough, because if it really was so supportive a lot of people were supposed to be on ARV now. Our Health Minister, she is not really doing enough for our people – that’s my own personal opinion.
There’s a support group, also an NGO in my community that works with HIV/AIDS people. The NGO doesn’t get any money from the government and they are doing a very very good job.
TAC challenges the government a lot, but many times we don’t get what we really want from the government you see. It’s like the government is putting us into a brick wall. We can’t get through and we really want the government to bring about change so that we can see that all people can rely on the government, not just on TAC.
The value of the media
In TAC the media is important because we go local – we use television news, we go in newspapers. I think the media is very very important for TAC. I think what the media is, is just to bring out [the message] more and then it will be much better. Because if the media don’t broadcast the message, then how will people out there know about it? So it will be much better for the media to give us more [space].
I think very few women know their rights because there are a lot of women who are raped; there’s a lot of domestic violence and many women just keep quiet. I think it’s our right as TAC women to take the message to the women and tell them there are women’s rights, we are fighting for women’s rights – because a women has the right to report a rape case, to report domestic violence. It’s so important for TAC to let women know that they are standing right beside them and they can really help them in many cases.
In my support group women are very very open about their status, so much so that they want their husbands to join – because many husbands are not members of TAC. Specially in my support group, we do lots of things, so that other women who can’t come out, who want to disclose their status, can join us and see what we stand for, what we are really doing in our communities.
We’ve got a [clinic] for pregnant woman; at every clinic that is an ARV site. We got a programme that every woman who is pregnant and HIV positive can go on, when they are about 36 weeks pregnant, and then they can [learn how] to prevent the baby being born with HIV/AIDS.
Reaching different groups
I think that is your choice to go for an abortion, because in South Africa it is legal. I can tell you that as a worker there in the hospital it was like every second or third week, young children came to have an abortion. When school started in January this year, we had two 11 year olds who came for abortions and it was tragic, really tragic. And some of them test HIV positive.
This is why, for me, I will say rather protect yourself than go and get pregnant you know. And sometimes, if the person gets raped, go to the clinic, get treatment you see, so that you can prevent getting HIV. Because many women, they don’t go and report the case or they don’t go for treatment and then theyend up with a child or they end up with HIV/AIDS.
That is why we have a youth sector and we got a lot of things to do with youth – to give them the message of prevention. But youth just carry on and on and it looks sometimes like we can’t get through to them, we can’t get the message out enough. So the youth just get infected day after day and it really is a tragedy.
We do cater for the prostitute, we do educate the street worker but we can educate just as much as we can, you know, and then what are they gonna do about it? Many people say HIV comes from sex workers but sometimes they use protection, you know, so we can’t just say it comes from them.
My personal vision is for everything to change, for people to have access to ARV – everybody who is HIV positive – children too. My view is that the poverty rate must go down so that people can use the ARVs and get healthy and look after themselves… I just hope that in the future we can work with the government and the government can provide us with what we really need.
My message to women is that we are all human beings and to protect yourself is the biggest gift I think God can give you – to protect yourself and look after yourself in a certain way that nobody else can. Only you can do that and to be a woman is a gift from God and we must treasure that.
This interview has been specially edited for the web and cut down by more than half. Some re-ordering has taken place: square brackets indicate ‘inserted’ text for clarification; round brackets are translations / interpretations; and dots indicate cuts in the text. The primary aim throughout has been to remain true to the spirit of the interview, while losing questions, repetition, and confusing or overlapping sections. Extracts from these interviews also appear under the key topics; these extracts pull together relevant comments and in a few cases include sentences that have been re-ordered or cut from the edits.