Phumzile, age 52 / Johannesburg, South Africa


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We need to remember that HIV is a justice issue. If we don’t deal with the structural injustices, people will continue being vulnerable to HIV and AIDS. The religious community has a responsibility to spread positive messages and if we still have negative messages within our religious contexts, I believe that those messages are not from God. We’ve had lots of negative messages like, “People who are living with HIV are promiscuous,” “People living with HIV are punished by God…” That’s not true. That is not true.

I believe that you remain special in God’s eyes. It doesn’t matter whether you’re dealing with diabetes, depression, or whatever it is, you remain special in God’s eyes. I believe in a God of love and compassion. For those of us who are suffering, we need to be there to support them. But it doesn’t mean that people who are living with HIV are suffering. I can’t take that, when people assume that we are sick and we are suffering, ’cause I’m not. Do I look like someone who’s sick? No. So that is part of the problem and that is the message for people out there. I am not sick. I am living with the virus.

I studied theology at the University of KwaZulu-Natal. When I finished my first degree, I was offered a position as a Women and Gender Coordinator at the School of Religion and Theology. And when I got that job, I thought it’s an opportunity for me to apply for a life cover or life policy. And one of the things they did then is, they would take two samples of blood before actually approving the application, and the two samples were to check your levels of nicotine and also to check whether you were HIV- positive. How they did it is they would not give you the results directly. If the results were positive, they were sent to your doctor. So the agent from the company that I applied to, he informed me that my application had been declined, and I knew that was HIV because I’ve never tried smoking. So, that’s how I found out. No pretest counseling. Nothing.

Those days – it was 1999 – you had to wait for about two weeks for your results, and it was the longest two weeks of my life. Fortunately I was already involved in HIV and AIDS work, and already had enough knowledge to know that it’s a manageable condition. I was still devastated. I was devastated for some time, I dealt with it, and eventually I just accepted my status and chose to live positively. I almost have to choose life on a daily basis, ’cause then it was very easy to give up hope and think that this is the end of the world. And of course the availability of resources like medication,  and opportunities to transform other people’s lives, I think all of those things – I have found them quite fulfilling, and I think they have kept me going.

I started medication in 2007. It’s been a challenge. It has had its ups and downs. I think the struggle with side effects – I don’t think people realize how real that is. One of the things that I still deal with is depression. Fortunately, I’m on medication, and I’ve been able to get my medication changed as well. Attending conferences has given me more information, therefore I was able to actually identify the aspects of my medication that caused the depression. We’ve ended up with the right medication, but I still take more medication to manage the side effects.

The challenge is, in my position – I’m the executive director of INERELA and I travel a lot, so it’s difficult to do things, like exercising. You know, I exercise for two days, then I’m off to another country. Come back, I’m exhausted, and there’s another trip coming up. Also, I was hoping that HIV would help me lose weight, but it hasn’t worked! I’ve learned to embrace my body and I can carry it, but it’s a challenge, especially when I have to fly to different countries. You know how big the seats are in the different planes… So that’s a bit of a challenge.

I also have very high levels of stress because of the nature of the work that I do, and of course that brings your energy levels down. You get little things like coughs, sore throats, you know, and they’re just an indication of your stress levels. I’m also diabetic, but I know which foods to avoid and which foods to eat. But otherwise, I think I’ve been doing quite well. I haven’t struggled that much. All the information that is out there makes life much easier.

I have a very strong support system as well: my children are very supportive, and also my mother – who is the only parent alive – is very supportive.  I’ve been very fortunate because I have my own doctor who understands the issues that I’m dealing with, so I don’t go to the public health centers. I don’t think that the medical fraternity realizes that when you get over 50, you’re dealing with aging and you’re also dealing with HIV in your life, especially when you’ve lived with it for a very long time. So you start worrying about things like arthritis. You start worrying about, um – for women, menopause is another issue. And I don’t think we have enough responses for that age group from 50 upwards. I think more work needs to be done so that people are aware of the issues we are dealing with. I have seen the older generation that’s living with HIV, people who are in their 60s. They have more challenges. So, preparing yourself for that is a challenge.

Fortunately, I’m a Christian, and I’ve been a Christian for a very long time. I believe in a God of life and healing, so that’s one part that keeps me going. I have a special relationship with God, where sometimes I’m very angry, but most of the time I am really grateful for the opportunities that I’ve had as a religious leader who is living with HIV. On days like those I remind myself that I am called by God, I’m equipped by God, so it doesn’t matter what I’m dealing with, I will be able to do whatever has to be addressed.

I think when you are over 50, you stop worrying about what people think, and you say what needs to be said. I think one of the things I’ve learned is that HIV is a justice issue, and I am able to support the key populations without any fear of being discriminated against. As a religious leader, you are often labeled when you associate with, for instance, the commercial sex workers and the LGBTI community. But because I believe that they have inherent human dignity, it’s our responsibility, as the religious community, to continue advocating for the recognition of their rights.

The work I’m doing now is doing exactly that, working with young people and challenging the religious community to develop positive responses to HIV, and confronting the issue of stigma directly. I believe stigma is just a violation of people’s human rights, and as human beings, we have no rights to judge each other. So, that’s basically what I’m doing, and I’m hoping that other people who are at my age are doing the same thing.

I think my main, everyday challenge is encouraging women to be independent and to make sure that they make decisions on their bodies. That is still a challenge, I mean, within the context of patriarchy.  Within the network of religious leaders, there are a number of us who are living positively. But there aren’t that many women; I think that’s the challenge.

I don’t want other women to go through what I went through, so I do a lot of work with girls as well, making sure that they have enough information on sex and sexuality so that they can make informed choices.

My dream is having a generation that does not have to deal with HIV. My children as well. They are all HIV-negative at the moment; it is my prayer that they stay that way. But it means that there’s a lot of work to be done, because young people have to be given information on a regular basis. It’s clear that HIV evolves very quickly and there’s new information almost all the time, and keeping up with the new research and the new developments is a challenge.

I am hoping to retire at the age of 55. I don’t have enough money at the moment, but I don’t think I can go on for much longer. I might be forced to continue working until I’m 60, but my dream is to work until I’m 55, then I can start focusing on the things that I’m passionate about. I have a passion for working with girls, as I said, and one of my dreams is having a leadership academy for girls one day. And we will be dealing with a whole range of issues: What does it mean to be a girl in a very traditional society? What does it mean to be a girl in a religious community that is still very much in the context of patriarchy as well? Even the sacred texts that we read, I mean, they promote patriarchy. So, this special passion for girls, and making sure that they have access to information, and they become independent, and they can make their own choices…

Theologies of the body as well. The religious community does not talk about our bodies. I have learned that this is an important part of who I am, and getting information as a woman – understanding your body – is important, and unfortunately we are not doing enough of that in the religious community. Christianity – it tends to emphasize the importance of developing spiritually, and it says when you are spiritually strong, you need to be able to suppress your feelings – your body is not as important as your spirituality. But I feel it’s important for us to integrate the two, and actually nurture both our spirituality and also our physical being. There’s a lot of shame around our bodies. And when you live with HIV, it’s even worse, ’cause you become even more ashamed. So if we can develop positive theologies that will help people to understand that their bodies are a gift from God, and we need to take care of them, and there’s no need for us to be ashamed… These are some of the things that I would love to be able to do when I have more time in my hands.

I just had a conversation with young girls the other day, and I actually said to them, in terms of our sexuality as women, the younger you are, you don’t enjoy sex, actually. You only enjoy it when you know your body and you are more mature and you understand the consequences. We don’t have these conversations, and I’m saying to them, it – sex – is beautiful. You will enjoy it. But you need to be comfortable with who you are.

So, one message for them is that life gets better, actually, as you mature. You stop worrying about what society expects from you, you stop worrying about what people will think of you, and you live your life as you feel God wants you to live it. You live it in abundance. I enjoy my life. It’s very balanced. And I have no fear of anyone judging me. If they judge me, it’s their loss. It’s their problem.

We are still struggling with stigma, ’cause there’s still a lot of fear out there. So when they hear stories of people who have lived with HIV and are now over 50, I believe that will give them hope. And they don’t have to live in fear. I mean, embrace who you are – your virus as well – and life goes on.

I’ve never dealt with stigma, and I think it’s because I chose not to be affected by stigma. I’ve never experienced it, not even once. When I was diagnosed, I was a single mother, and I got married after that. So, for me, it hasn’t stopped me from living my life. I actually think HIV has given me opportunities to get more information on who I am as a woman, so I am more empowered than someone who is not dealing with the virus in their body.

I’m not scared of the end. I’m not worried about the end. I’m alive. I have challenges, but I’ve chosen not to spend too much time on them. I’m a very happy woman. And of course, as a widow, I’m single and I’m free to mingle, so I’m looking for someone who has potential to be a good partner. I don’t worry that much about the fact that I’m living with HIV – it’s part of who I am. So life goes on. I believe that nothing – nothing! – is impossible with God. So, I’ll be fine.