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Siyayinqoba Beat It! 2006 Episode 4 -

Living with PLWHA

The Siyayinqoba Support Group spoke about living with HIV and how it affects the people who are close to us. In studio, we had Lihle's fiancé Mandla Ngcoya who shared with the viewers how he had thought of all the risks that come with marrying a HIV positive person. Another guest in studio was Busisiwe's son, Bongisisa Maqungo who also shared with the support group the different reactions he would get at school when he tells his peers that his mother is HIV positive.

Shalom Ncala: Sanibonani, siyanamukela eqendwini le-Siyayinqoba, igama lam ngingu-Shalon Ncala. Kuleliqembu lokwesekelana le-Beat It! sonke siphila negciwane le-HIV, sihlangana njalo ngeviki ukuba sixoxisane ngezinto ezithinta izimpilo zethu maqondana ne-HIV, usukela odabeni yendlela yokuziphatha ukuya olwazini olusha mangelana nezokwelapha. Namkelekile ukuba nihlangane neqembu. I-Siyayinqoba huhlelo lwakho lokuphila kangcono ne-HIV. Uma uphila negciwane le-HIV noma unomlingani, ilunga lomndeni noma umngani osengenwe ligciwane le-HIV, i-Siyayinqoba ngeyakho. Sonke siyazi ukuthi ukukhishwa inyumbhazana kanye nokubandlululwa kwabantu abaphila negciwane le-HIV yinkinga enkulu Eningizimu Afrika. Ngakho ke ngabe kwenzekani uma uphila emndenini onomuntu ophila ngobusobala negciwane le-HIV/AIDS? Ngabe akuyena umlingani noma ingane ngezinye isikhathi ethintekayo kakhulu yilokho. Siyabona ezincwadini zenu ukuthi iningi lababukeli bethu ingabantu abanamlunga omndeni aphila negciwane le-HIV. Ngabe uthinteka kanjani ngokuhlala nomuntu ophila negciwane le-HIV/AIDS? Okokuqala samukela umkhwenyana ka-Lihle u-Mandla ohlelweni ukuze asabele ulwazi analo. Sawubona Mandla, ninjani namhlanje? Masibone izithombe zomcimbi wokuthembisana ka-Mandla no-Lihle owawukhona ngonyaka odlule e-Lamontville. {IsiZulu} [Hello and welcome to the Siyayinqoba Support Group. My name is Shalom Ncala. In the Beat It! support group, we are all living positively with HIV. Each week we get together to discuss issues that affect our lives with HIV, from lifestyle issues to getting the latest information on medication. Welcome everybody. Siyayinqoba is your guide to better living with HIV. If you are living with HIV, or you have a friend, a family member or a partner who is HIV positive, Siyayinqoba is for you. We all know that stigma and discrimination against people living with HIV is a big problem in South Africa. So what happens when you are living in a family with someone living openly with HIV/AIDS? Is it the partner or the child who feels it the most? We know from your letters that a lot of our viewers are people who have family members who are living with HIV. How are you affected by living with someone living with HIV/AIDS? Firstly, we welcome Lihle's fiancé Mandla to the show, to share his experience with us. Let's look at Mandla and Lihle's engagement party that took place in Lamontville last year.]

In sickness and in health, until death do us part

Lamontville, KwaZulu Natal

Mandla Ngcoya: Ndizothembisa ngokuzibophelela ukuthi lendima esengiyiqalile, izohamba ize ifike ekugcineni nje ngokuqala kwayo. Ngithi ngalengangatho Lihle ses'hlale is'khathi eside kwaze kwafika la kumele ukuthi nami ngikukhombise ukuthi kuningi engikuthole kuwena. Ube njengodade wethu, wanje ngomfo wethu, wanje ngomngani, wayiyo yonke into. Kunezinto ebendistakhe kuzona but wena, wayingidi, wangukhiye walokho. Ngithi ngalendandatho ndiyathembisa ukuthi lempilo siyiqala namhlanje izohamba size sihlukaniswe hukufa. {IsiZulu} [I am here today to promise that I'm going to commit to what I have started. I make that vow with this ring. Lihle we've been together for a long time and along came the time for me to show you that I've gained a lot from you. You've been like a sister, a brother, a friend and everything to me. There were doors I couldn't open but you supplied the keys. I promise that this ring will bind us from today until death do us part.]

Lihle Dlamini: Mandla, kukude la siphuma khona mina nawe. Ziningi izinto ezisijabulisayo sindawonye, ziningi futhi eziphinde Zenze sithethisane futhi kodwa kuna konke lokho ngicela siqhubeke ngokubengezelana, sithandane futhi. Ngiyabonga futhi ngiyayamukela indandatho yakho. Nami ngifuna ukufaka uphawu lokuthi nami ngiyazibophezela Mandla for the rest of my life, I promise. {IsiZulu} [Mandla, we've come a long way. A lot of things make us happy together and there are things we argue about. Thank you and I accept your proposal. I also want to give you my sign of commitment for the rest of my life.]

Mandla Ngcoya: You know, I can't express it really. I've been waiting for this time for such a long period, I'm so happy. And she is mine, all mine.

Support Group

Shalom Ncala: How do people out there see you? How do your friends treat you because of your relationship with Lihle?

Mandla Ngcoya: Ekuqaleni nje, kuye kwabane nenkinga, ikakhulukazi ngohlanana nabangane. So bengibuza njeukuthi "njengoba amantombazana engaka, ayawela nje futhi kuwena, why you choose uLihle usazi i-status sakhe? Akuyi nge-status somuntu ukuthi unjani, konke kuqhamuka entliziyweni. uLihle ungumuntu wes'fazane, unamalungelo onke okuba umuntu wes'fazane. Njenge status sakhe nje, akuthi ngekhe amthole umntwana, kulilungeloo lakhe as umntu wes'fazane athole umntwana biologically hayi ngalezindaba ezi funeka kuthathwe ezi. {IsiZulu} [At first, there was a problem, especially with friends. They would ask me questions like: "When there are so many girls out there who like you, why do you choose Lihle when you know about her status?" I say, it is not the status that determines a person, it all comes from the heart. Lihle is a woman, and she has every right to be a woman, despite her status that doesn't mean she can't have a child. It is her right as a woman to have a child, biologically, not by putting this and that together, no. She must have a child.]

Busisiwe Maqungo: Xa usithi uLihle unelungelo, yinyani leyo futhi iphelele. Amathuba mancinane ukuba ungayifumana ingculaza but ja. {isiXhosa} [Being well aware of Lihle's status, saying Lihle has a right, it's true, I don't dispute that. But the risks that we know about,] have you and Lihle discussed them so that you will be able to say even though the chances of contracting AIDS are low.

Mandla Ngcoya: Saya kwi-counsellor, sayixoxa lento and sabonisana. Bekunabantu ebesondelene nam kakhulu emndenini wam abagasekho abashona nge-HIV/AIDS related issues. So yinto esengiyicabange kahle ngenza full research ngayo. Ama-risk ngiyawazi wonke so that's why ngithi I'm ready. {isiZulu} [Ja, I'm ready. We have been to a counsellor and discussed those issues. There are people who were very close to me in my family who have passed away because of HIV/AIDS. So it's something I've thought about and done full research on. I know all the risks, so that's why I say that I am ready.]

Lihle Dlamini: He came to me and he approached me and I told him that you know that I'm openly living with HIV. He said yes I know that you are openly living with HIV. I asked him whether he would stand for that because I can stand for it, I can defend myself. But will you be able to face up with the stigma and discrimination against my living openly with HIV. He said: "I will stand for it." Mandla and I sat down and decided that if we get into a relationship, at one stage we will want to have children and then we decided to go to my doctor. Mandla is HIV negative and my viral load is undetected, so the chances of passing HIV on to him are very minimal but still the chances are there and he might still get infected. But it's a risk he's willing to take. Mandla is not like other men and I thank him for that. Someone else would have said "No I'm not going to do that." He's one in a million.

Busisiwe Maqungo: I'm really happy for Lihle, I'm really happy that you guys are together because this doesn't happen often, especially to us HIV positive people. HIV negative people don't want to get involved with us, not because they don't want to but they fear the stigma. Some people know that being with someone who's HIV positive doesn't mean that you will contract HIV. They know that. When I first met Lihle she wasn't in a relationship for a very long time until she met Mandla. After meeting Mandla, she was just glowing. Honestly, I am happy for her.

Lihle Dlamini: I did have fear. I was afraid that if I infect Mandla, I will be the one to blame. If he gets infected, everybody would be saying that I infected Mandla knowing that I am living with HIV.

Fanie de Villiers: Een ding wat dit vir my ook baie maklik gemaak het was o moor daai vrees te kom van, waar jy miskien jou vrou gaan infekteer. Ek meen ek sê nie dat dit nooit kan gebeur nie, die kanse is daar. En mens moet dit in gedaagte hou, maar die dag wat sy omgedraai het en vir my gesê: "Luister hierso as ek met jou trou lewe ek my lewe as of ek al klaar MIV positief is." {Afrikaans} [What made is easy for me to overcome the fear of infecting my wife, I'm not saying it will never happen, the possibility is there. A person should bear that in mind. But the day she turned to me and said, "Listen, if I marry you, I will live my life as if I am already HIV positive."] And those were powerful words to me.

Shalom Ncala: We'll talk more about living with HIV positive people after the break.

Shalom Ncala: Welcome back to the Siyayinqoba support group - the programme for everyone infected and affected by HIV. By now, all of you know Busi. Today we welcome Busi's son Bongi onto the show. Hello Bongi. Unjani? We visited Bongi and Busi at home and chatted to Bongi about his experiences of living with his HIV positive mother. Let's take a look.

Disclosing to my child wasn't easy, but I had to.

Cape Town, Western Cape

Bongisisa Maqungo: Igama lam ndinguBongisisa, difunda e-Cape Town High School. O-lady lam landixelela uba u-HIV positive ndina-10 ngo-2000. ngelaxesha wayendixelela ngalo ndakhala, ndicinga uba abantu abane-AIDS bayafa, ngoku io-lady lizofa, ndishiyeke ndingena o-lady ndakhala. Wazama ukundicacisela uba [My name is Bongisisa and I attend Cape Town High School. My mother told me that she is HIV positive when I was ten, that was in 2000. When she told me, I cried because I heard that people die of AIDS and I thought I would be left without a mother. But she explained to me that] she's still going to be around and she's still going to live for a long time. Uba ndiyam-support nabantu abasecaleni kwakhe bayam-support, uzohlal'ixesha elide so mandingabina worry. Ngamanye amaxesha ndiyathula uba i-olady lam li-HIV positive but ndizame uzisa i-issue ye-HIV kwamajita uba sithatha nge-HIV. [And if she gets enough support from me and from the people close to her, she will live for a long time, so I shouldn't worry. Sometimes I don't speak about my mother being HIV positive, but I try to raise the HIV issue when I'm with my friends.] {isiXhosa}

Bongi's friend 1: Ngelaxesha uBongi wayendixelela uba umama wakhe u-HIV positive ndothuka but zange ndifune andibone uba ndothukile. So ndaye ndayigcina apha ngaphakathi uba umama kaBongi u-HIV positive mara ndazixelela uba nam besendifuna ubona uba uphila kanjani. Then ndaqala ubukela le-show ka-Siyayinqoba then ndabona umama kaBongi uphila impilo yakhe eright and u-healthy. Ndatsho ndabona uba abantu aba-HIV positive nathi singakwazi siba-appreciate ngendlela abayiyo. {isiXhosa} [When Bongi told me his mother is HIV positive, I was shocked but I didn't show him that I was shocked. I told myself that Bongi's mother is HIV positive and I wanted to see how positive people live their lives. Then I started watching Siyayinqoba Beat It! and I saw Bongi's mother was living a full and healthy life, just like other people. I then realised that we should appreciate HIV positive people for who they are.]

Bongi's friend 2: Mna bendingayazi uba amama kaBongisisa u-HIV positive. Ndisandoyiva ngoku and ndifile bad uba umama kaBongisisa u-HIV positive. So ngoku ndiyayazi and I'm willing to support uBongisisa, ndibescang'kwakhe ngawo onke amaxesha. {isiXhosa} [I didn't know that Bongi's mother was HIV positive until now. I empathise with him for his mother's status. I didn't know before. I know now and I'm willing to support Bongi and be by his side all the time.]

Busisiwe Maqungo: I wanted to tell him myself that this is the situation. Kwakungekho lula Kwakunzima. [It wasn't easy it was hard.] Imagine uxelela umntwana wakho uba [telling your child] you are HIV positive and ezinye zezinto ezenza kungabilula [what made it difficult] is that HIV is a sexually transmitted thing. So ingathi kengoku uxelela umntwana wakho uba [it's like telling your child]: "I've been having sex and unprotected one" yenye yizinto ezenze uba makube-difficult but I had to. [That is one of the things that made it a bit difficult but I had to.] {isiXhosa}

Bongisisa Maqungo: Abanye abantwana ndandingabaxeleli ngoba baya-discriminate and abazi nto nge-HIV. Uba umntu une-HIV, uzofa and they will make fun of you, yonke lonto. {isiXhosa} [I didn't tell some children because they tend to discriminate, and they are not well informed about HIV. They say if a person is HIV positive, he will die and they will make fun of you.]

Busisiwe Maqungo: Ndandiye ndicinge Mhlawumbi into yoba unazo ii-basics kwinto ye-HIV because ndambuza into yokubana unayo into ayaziyo nge-HIV when I was disclosing to him. Ewe uyayazi i-HIV, i-HIV yi-AIDS and umntu one-AIDS uyafa nd that's when I told him uba mna andizufa, ayingomntu wonke ofa yi-HIV. {isiXhosa} [I wanted to find out from him if he has any basic knowledge on HIV because when I disclosed to him, the only thing he knew was that if a person has HIV/AIDS, that person dies. That's when I told him that I'm not going to die, and not everyone dies of HIV.]

Bongisisa Maqungo: Uqala kwam ukundixelela uba u-HIV positive... uzophila ixesha elingakanani nam? Ugqirha uthe uzophila xa kutheni? Wathi uba i-cure ye-AIDS Ayikho and i-cure ye-AIDS ibanguwe ube-strong. {isiXhosa} [When she told me she's HIV positive, my first question was how long is she going to live while we are together? And what did the doctor say about her health because there is no cure for AIDS, and the only available cure is for you to be strong yourself.]

Support group

Vuyani Jacobs: Bongi, ngoku u-Busi ebephila phandle ne-HIV you were still very young usemncinci, andazi noba uyakhumbula, wawusemncinci wakhula nalonto. Abantu abadala uyawufika bebuza "u-brother wakho une-HIV?" bathi "hayi uze uyibuze kuye." Because unoloyiko lokuthi uzoyicacisa kanjani. Wenze njani ngelaxesha wawusesikolweni, sowumdala kodwa ngoku, yintoni owawuyenza because I'm sure you had to defend umama wakho at some stage. {isiXhosa} [Bongi, when Busi started living openly with HIV, you were still very young, you won't remember. You were young and you grew up with that. I'm very interested in this because adults, for instance, who've known for a long time of other people who have HIV, and when asked: "Is your brother HIV positive?" they say: "Ask him yourself" because they don't know how to explain it. What did you do when you were at school? You're much older now, but when you were younger, what did you do because I'm sure you had to defend your mother at some stage.

Bongisisa Maqungo: Ngoku bendisesemncane bendingekayazo uba i-olady li-HIV positive. Kodwa es'kolweni abantu bayeza kum after sishootile, ndimxelele uba umama'am u-positive, naye wandixelela uba i-sister yakhe yasweleka from AIDS. Nam I'm also the same as ubhut'Mandla, ndiyi-assistant ye-olady kwiitshomi zam. {isiXhosa} [I was too young and I didn't know my mother was HIV positive. But now at school, people come to me. One of my friends came to me after the shoot and after I told him that my mother is HIV positive. He told me his sister passed away from an AIDS related illness. I'm also like Mandla, I assist my mother with my friends.]

Vuyani Jacobs: Uthe ekugqibeleni uba ngamanye amaxesha awutsho uba umama wakho u-HIV positive, sube kutheni? {isiXhosa} [Why do you only disclose to some people about your mother's status?]

Bongisisa Maqungo: Abanye abantu because umntu ongaku-discriminate uyabonakala and Kwabanye abantu anditsho. uSanele itshomi yam, nguye endamxelelayo, ndamxelela nabanye. {isiXhosa} [People who don't discriminate are recognisable, so I don't tell those who do discriminate. Like my friend Sanele, I told him first and then told the others.]

Vuyani Jacobs: Do you think likhona ixesha apho wayekhe wagula khona, woyika at some stage okanye zange wagula oko? {isiXhosa} [Has there ever been a time when she got ill to a point that you got scared?]

Bongisisa Maqungo: Ebekhe wagula ngo-2002 [She got ill in 2002] and I was scared uba hey uzocisha. [and I thought ‘this is it.']

Busisiwe Maqungo: I'm going to be honest, I haven't made any provisions into yoba mhlawumbi uba ngaba kungenzeka ndife. [should it happen that I die.] I think lithemba nje endinalo. [it's just hope.] I'm only hoping that I will be there until they grow up. Into endisoloko ndazixelela yona, xa kunokwenzeka ndibhubhe, at least mandisweleke xa uBongi abe sele ephumile es'kolweni. So that if kuyenzeka ndisweleke, yena athi take over apha ku-brother wakhe and u-brother wakhe uzobe seyengekho mncinci kakhulu ngoko mhlawumbi. [I keep telling myself that if it happens, let me die after Bongi has left school. So that if I die, he can take over for his brother who would be grown by then.] {isiXhosa}

Lihle Dlamini: I think it's very important to make provisions for our children for when we die, whether you're HIV positive or not. Because uBongisisa uzobe ephumile e-tertiary but uBongisisa uzokwazi na ukunakekela ingane [Bongisisa would have finished tertiary education. But will he be able to look after] this ten year naye uzobe edinga ukuthi afunde es'kolweni? [who would also be attending school by then?] Will he be employed by then? Will he be able to cope with looking after his younger sibling? And I think we owe it to them sikwazi ukuthi sibabekele imali [to save money for them] at the end of each month. So that when you are gone, he should not the carry the burden of raising his brother. {IsiZulu}

Busisiwe Maqungo: The other thing about us living with HIV and the people close to us, it has helped me better understand it because I'm 100% sure that the chances of Bongisisa contracting HIV through sex are very low. He learnt from me, his parent. He sees and lives with it at home. He has first hand experience of the life of an HIV positive person. He has learnt the lessons from me. I never lied to him and said that I was raped, no. I told him the truth, that it was because of my carelessness that I am HIV positive. I regret that, and given a second chance in my life, I would try to stay HIV negative and try to maintain my HIV negative status. But with HIV, there's no turning back. If you are HIV positive, you are stuck with it. Mandla would never contract HIV by some other way because he sees it from Lihle. Bongi would never contract HIV through sex because he learnt it from me.

Fanie de Villiers: Bongi, there's one question that comes to mind for me, I understand that you had a sister who was HIV positive and who died. And I was just wondering how that affected you, how do you feel about that?

Bongisisa Maqungo: I felt bad because I never had too much time to spend with her and I don't like talking about her.

Fanie de Villiers: So that's an issue you don't really like to talk about? And I think we respect that because I think all of us have issues in our lives we decide this is where I draw the line. And I think he was a perfect example because I do feel that's a message that can also go out, that people must understand that there's a point where they can protect themselves and where they can say ‘no'.

Vuyani Jacobs: Ja, you have to draw the line. For instance, my family sometimes don't want to talk to me about the AIDS issue because they feel that it's too much. And sometimes they come to tell me that: "Vuyani there's this and that" and I just say "Oh ja". I get enough. As Lihle's relationship has pointed out, that there's a virus but we are human beings, we live normal lives. And that we live lives, we have fun, we have tears and those tears are not necessarily about HIV. We have anxieties, we have fears and all of those things and it's just a normal part of our lives.

Thami Mthembu: And I think Mandla put it very eloquently because he was saying when he saw Lihle, it came to the point that he wasn't seeing the HIV, he wasn't seeing the virus but he was seeing the woman. And I think sometimes we get so consumed because we do so much advocacy against AIDS and because we're living openly with it. Sometimes people forget that it's a part of us and we have to advocate for it but it defines who we are as human beings. We don't seize to exist as individuals once we have this virus.

Shalom Ncala: Sizophinda siqhubeke nabantu abahlala Nalaba abaphila ne-HIV ngemuva kwekhefu, unganyakazi. {IsiZulu} [We'll talk more about living with HIV positive people after the break. Stay with us.]

Shalom Ncala: Mbukeli siphinda siyakwamukela futhi ohlelweni leqembu lokwesekelana le-Siyayinqoba okuhuhlelo lwalowo nalowo ongenwe futhi nothintekayo yi-HIV. Namhlanje sifunda ukuthi kunezinto eziningi ezintle malungelana nokuphumela obala ngesimo sakho. Ukwabelana ngobunzima kuvamiswe ukunciphisa umthwalo esiwuzwayo uma siphumela obala ngesimo sethu, akuthina sodwa abathintakalayo kepha nabalingani bethu, namalunga omndeni kanye nabangani, nabo bonke abangenela impi yokubhekana nobandlululo kunye nokulwela amalungelo abantu abaphila ne-HIV okusiza ekuqedeni ukwehlisa isithunzi nokubandlululwa. Ngakolunye uhlangothi, ukuziveza yinto yokuzikhethela kumuntu futhi kubalulekile ukuthi sizivikele kanye nalabo abaseduze kunathi. Siyathemba ukuthi niluthokozele uhlelo futhi niyawuzwa nomoya we-Siyayinqoba, ngokuhlanganyela singayinqoba. Siyakuthokozela kakhulu ukuphawula imibuzo yenu. Masiphinde sihlangane evikini elizayo eqendwini lokusekela i-Siyayinqoba Beat It! Kuze kube yisikhathi esizayo, hlalni ni philile hlalani ninethemba. {IsiZulu} [Welcome back to the Siyayinqoba support group - the programme for everyone infected and affected by HIV. Today we've learnt that there are lots of positive things about being open about your status. Sharing difficulties usually reduces the burden that we feel. When we're open about our status, it doesn't only affect ourselves but also our partners, family members and friends. They all become fighters against discrimination and for the rights of people living with HIV, helping to break down stigma and discrimination. On the other hand, disclosing is a personal choice and it's important to protect ourselves and those close to us. We hope that you have enjoyed the show and are feeling the Siyayinqoba spirit, together we can beat it. We value your questions and comments. Join us again next week in the Siyayinqoba support group. Until then stay healthy, stay positive.]

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