‘€œIn a country where it’€™s said that half of the people who are HIV-positive don’€™t know their status, we thought that we need to get together as people living with HIV and start looking for those people who have tested HIV-positive. They don’€™t know where to go. One of the most common messages that we get is that, ‘€˜I’€™m HIV-positive. I’€™m looking for other people who are like me’€™. The message that we try to tell people is that ‘€˜there is life beyond HIV’€™,’€ says Pholokgolo Ramothwala, Positive Convention convener.      

Pholo, as he is commonly known, is concerned that many people living with HIV will continue hiding given the few spaces where HIV-infected people can network amongst themselves.  Recently, the national Health Department started a campaign to mobilise South Africans to test for HIV. But as many people find out that they have HIV, there is an increased need for continuous support to help them live with their diagnosis.          

‘€œThis year alone, I’€™ve seen more people coming to me (saying) that ‘€˜I’€™ve just tested positive than any other time that I’€™ve been in the HIV field. We are now concerned that more and more people are beginning to find out their status. But what happens after that? What happens if you don’€™t need antiretrovirals, for example? How do you deal with those emotions and the fear that, maybe, you’€™re going to die even though you know you’€™re not going to die? Some people still feel like that’€, he says.            

Statistics show that about 5.6 million South Africans have HIV infection. Pholo says these individuals need to be found to prevent new HIV infections.

‘€œIt’€™s a fact that you can’€™t get HIV from somebody who does not have HIV. You can only get HIV from the person who is infected already. It becomes important because once we, as people living with HIV, take responsibility to make sure that if I know my status, I’€™m not going to infect another person. It’€™s quite easy for us as people living with HIV to encourage other people who are recently diagnosed that, ‘€˜these are the things you can do and these are the things you should not do in order to reduce new infections in the country’€™. Another example is mothers who are HIV-positive and pregnant. If we focus on those mothers to make sure they go through the PMTCT programme, we won’€™t have 70 000 children still being infected with HIV every year in this country’€, he says.    

‘€œWe talk about how do we reduce new HIV infections in this country, but also how do we reduce the burden of illnesses. People get opportunistic infections like TB (and) pneumonia before they start treatment, whereas you don’€™t have to go there. You can start your treatment on time. You don’€™t have to experience side-effects. The plan of finding the others is to talk to people about that and say, ‘€˜there is help out there. You need to go there and get it and if you can’€™t find anybody who can help you, we can assist you to be able to get that assistance’€™,’€ he adds.

Clinician and health and beingness consultant, Dr Ntlogeleng Majoro, says it’€™s important to find others living with HIV so they can also be equipped with tools to make the right choices about their well-being. He says they can learn from others who are living with the virus that HIV is not a death sentence or the end of life as they know it.

‘€œYou know, you hear people’€¦ before you even say what you want to say, they’€™ve told you how they’€™re going to die, how life is going to be bad, how they are going to be jilted, how they’€™re going to be discriminated at work. If you discriminate yourself first, what do you expect from others?’€

AIDS survivor Amanda Matlotlo who lives in Pretoria, identifies with Majoro’€™s statements.

‘€œIt’€™s up to you if you shame yourself or you dust off that and you live. One thing that I told myself was I don’€™t want people to see HIV in me. But I want them to hear from me that I’€™m HIV-positive’€, she says.

Dr Majoro says there is no reason why people should not live fulfilling lives once they have HIV. He says there are simple things that people should learn to live with after finding out that they have HIV.

‘€œThis virus destroys your immune system. When this virus destroys your immune system, infections that would normally not infect you, suddenly take advantage. That’€™s why we call them opportunistic infections. That’€™s the summary of HIV. The next thing we look at is: Does my body now need help or not? That’€™s when we take blood and look for your CD 4 count. If your CD 4 count is below 350, then we know your body’€™s saying: ‘€˜I need assistance from antiretrovirals’€™. If your CD 4 count is above 350, your body can still fight its battles. We’€™ll monitor that’€.

The dangers of people going underground with their HIV-positive statuses are well known.  

‘€œAs long as we don’€™t find the others who are living with HIV, this virus is going to continue to kill many people. I’€™m not talking about forcing people to know, but we need to encourage other people to know their status and to make sure that those people who are not infected with HIV should not be infected with HIV. They are taking our space. There’€™s too many of us already’€, says Positive Convention’€™s Pholokgolo Ramothwala.