Casestudy: Susan Kekelwa

Know what you think, know what you do - you will live longer

Susan Kekelwa is 36, married and her husband has three children from his previous wife who died. Susan does not yet have children.

Right now I am a volunteer with the Network of Zambian People living with HIV (NZP+), and with the IEC (Information Education Communication) Advocacy programme also where I do advocacy work. I have been with NZP+ for seven years; I joined just after I discovered my HIV status. Since joining I have received some skills training in advocacy work and human rights for people living with HIV.

After I was tested and was found to be positive, I went for over a year without telling anyone about my status but later on when I began to get involved in the work and saw how people would not go for testing and I decided to disclose my HIV status to some people. Even now some people do not believe that I am positive, because I have managed to look after myself so well.

I think I know how I became infected. I am not a person who had very many boyfriends, but I know one of them cheated on me. The other way I may have become infected is through being raped by a neighbour. It is only now that I realise how common it is that people violate other's rights but the victim is too scared to do anything about it. We went to the police but they argued that maybe we had an arrangement with that man - the blame was being transferred to me. I have met the man since, his wife has divorced him and he is miserable. After this, it was very difficult for me to have a boyfriend because I couldn't cope with it all. Now I'm not on any treatment. I just take good care of myself.

I met my husband through an organisation that visits prisons; he was in prison but very much willing to learn through the peer educators there. When he came out of prison, it was a while before I saw him, but eventually we did and he came to me and said 'You are going to be my wife!' I said, 'I don't think so!' but I was wrong as we got married on the 22nd December 2007. When I told him my status, we decided to go for VCT together because he did not know his. We both tested positive so I took him through the process of accepting his status and caring for himself.

Now we live a very happy life, he is not sick nor is he on treatment. We are planning to have a child because with PMTCT it is possible. But I want to take my time and prepare and look at all the options of breastfeeding or not and things like this. When my husband came out of prison, he found it very difficult to get a job. We have an uncle who gave him a car to use as a taxi so we can manage life. So when we look at our situation to have another child right now, it would be a problem for us, we have to raise some money first. Now he has a job so we hope there will be a baby soon!

Women are more vulnerable to HIV; it is always the women who take the blame. If they are pregnant, get tested and are positive, the men say 'you have brought the virus, you have been having affairs.' When you see the statistics of NZP+, there are more women in our support groups than men - they are very, very vulnerable.

For Zambian women, they need to know it is a virus that lives in you, it is not going anywhere; what you are doing, it also does, you need to accept it. If I sleep, it is sleeping, if I eat, it is eating. If I am having a lot of sexual partners, it is also interacting with them because it is in me. We need to remember that what I am doing, the virus is also doing it. Only when you die, it will stop. People think that it is only when you are misbehaving that you will transmit the virus to someone else, which is not the case. This makes stigma worse because you think everyone is looking at you, everyone is watching you. If I look in Livingstone, I can be like a role model for the people because when they see me, they do not see the virus. I am open. I am not shy about it. If you do not open up and disclose it, it will eat you up! Women need to be strong and disclose their status, then you can survive.

For men, it is important for them to do couple counselling, they need to change their attitudes towards sex. They need to change their attitudes and behaviours or else it will continue. There are too many multiple concurrent partnerships.

My work in the prisons involves peer education, those in prison need to be cared for if they are HIV positive, food supplements are needed if a person is taking ARVs; they need to know how to care for themselves. For example, my husband is advocating for something to be done about sanitation, things are improving but diseases are still there though - TB, HIV, STIs.

Although people don't want to talk about it, every person deserves a second chance. Not everyone accepted my husband at first but I told them he deserved a second chance. He knows God now, is active in the church and is a very happy person. He is just a man. Some people think ex-prisoners need to be condemned. Not me, no.

I hope other people will learn from me. Positive living is something you need to do and can do. Know what you think, know what you do - you will live longer.