Sonto is a housekeeper working in Cape Town. She is in a long-term relationship with her boyfriend and together they have a 3-year old daughter. We met up with her and chatted to her about her positive life living with HIV and what helps her live life to the full.
How old were you when you discovered you were HIV+?
I was 24 years old at the time.
How did you know you had been infected with HIV?
I met a boy, my first real boyfriend, and we fell in love. One thing led to another and we conceived our daughter, which meant I needed to go for blood tests. When the tests came back as positive for HIV, I was devastated. Here I was in love for the first time, and carrying a child whom I could transfer the infection to as well, and I was truly terrified and alone. I couldn’t tell anyone I was pregnant, let alone that I was HIV+ so I kept it to myself (and my boyfriend).
What happened when the baby was born?
Because I was HIV+ our daughter was born by Caesarean Section, to minimise the chances of spreading the infection to her. She was also very small, a result of the ARVs I had started taking from the moment I found out.
What prompted you to tell people about your status?
I had carried the burden of what felt like such a dirty secret for nearly 18 months on my own, not even telling my sisters, when one day my employer noticed I was gaining weight – from the pregnancy and also a result of the ARVs. She asked me whether we were to welcome another addition into the family and I promptly burst into tears. After I said I was pregnant, I sort of blurted out that I was HIV+. I couldn’t hold it in anymore and just needed someone to know and help. There are so many stigmas attached to this illness and I didn’t want to be looked at in funny ways and whispered about. I wasn’t ready to face it, but I needed some kind of support.
What was your employer’s reaction?
I know it sounds funny, but my employer was almost relieved. She had been concerned that I was going to leave the family and move back to the Free State to bring up my daughter. She then just simply put her arms around me and hugged me and let me cry myself out. Then she called her husband and both of them hugged me and I cried some more. I cannot tell you how relieved I was – I slept well that night.
Did things change in the house because of your status?
Yes and no. For a start we needed to tell the boys that I look after, but that was only after my employers had asked my permission to do so. Then we bought some medical gloves so that if I ever cut myself and needed help someone could help me, and we put in some safety measures. What amazed me was how calm everyone was, not what I was expecting at all, although my employer did get a bit angry, basically because I had kept it to myself and put myself under unnecessary pressure.
What about your family?
My employers invited them all round for tea and we told my sisters together. Their reaction was also not what I had expected. Cross and calm at the same time. Cross because I hadn’t told them sooner and calm because they realised that nowadays HIV is not so uncommon. This doesn’t make it right, but there are many people who are infected, so why the need to be silent and ashamed?
Is that why you decided to talk to us?
I wanted people to know that yes, I could have used a condom and not contracted the infection, but then I wouldn’t have had my daughter who is everything to me (and her father), but life isn’t about being perfect. I want those infected with HIV to know that not everyone will run away from them and those that do, do so because they do not understand what this infection is and that even though I have it, I lead a very healthy life, and expect to do so for many years to come. The more we talk about it, the more we can educate and the more chance we have of stopping HIV from being transmitted. I wouldn’t want anyone to be under the kind of pressure I was when carrying my daughter, dealing with the news of the HIV, working a full day and not being able to say anything.
Is your daughter HIV+?
Thankfully not. Because of the ARVs I was taking during my pregnancy, we prevented the mother to child transmission. I also didn’t breast feed as this can also pass on the virus to the baby. However, the virus can run in a baby’s blood for up to 18 months, as this is the mother’s blood – so until the child makes their own blood, it’s not safe to say the child isn’t HIV+. When I first told my employers about being HIV+ we all went for tests, including my daughter. The results showed she contained some form of the infection, but this was when she was about a year. At 18 months we all went and got tested again and there was no trace, and six months later again, she was confirmed as being clear. The second time I felt such flooding relief.
What about your partner?
He didn’t want to know what his CD4 count was – I think he was in denial. But finally for the sake of his daughter he went to get his count, which was very low at 174. Now on ARVs , his CD4 count is 500+ and mine is nearing 1000.
Your ARVs are helping – are they readily available to you?
Well yes and no. I need to go to the local community clinic once every three months. It’s an all day affair, which means I need to take time off work, but I would rather do that than be ill and potentially lose my life.
What is your experience with obtaining your ARVs?
The clinic sisters are very friendly and understanding. We have counselling and they test for CD4 every three months and ask about any side effects. I’ve been quite lucky – I had nausea, bad dreams and dizziness in the first two weeks of taking my original medication, but these have all gone now everything is fine.
What dosage did you start with?
I started with three tablets in the morning and now take another type of ARV only once per day at night – it’s part of my evening ritual and I have never skipped.
What about when you travel?
The clinic is very accommodating and the one I go to makes arrangements for all of us who are travelling home over that time – mostly the holiday periods – and ensures that we have enough to keep us going.
What do you do to keep healthy, can you share some tips with our readers?
The most important thing about living with HIV is to manage it. That means taking my medication – Antiretroviral (ARVs) – every day and at the same time (as much as possible), eating well and exercising. I have recently taken up running and even though it’s winter, I’m loving it. There is nothing better than being out in the fresh air and feeling so alive, although to be honest, my first few runs made me feel like dying, but then that is not an option for me!
Any final words or wisdom for our readers?
I haven’t gone around broadcasting my status to everyone, there’s no need. But the most important people in my life know and still love me. It took me a while to love myself again, but through the care and acceptance I have from those I trust, I have put myself firmly on the path to better health.
I just wish I hadn’t waited so long to tell.
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