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WORLD AIDS DAY: Growing Up with HIV

LUSAKA, Nov 30 2009 (IPS) - Sixteen-year-old Andela Milambo* wants a husband. She is not looking for love, but for someone to share the burden of living with HIV. She wants to be able to take her medicine without having to hide, to discuss the recurring herpes with someone who understands.

A hand woven tag bearing the HIV symbol on sale at the Sokoni Market in Nairobi, Kenya. Credit: Allan Gichigi/IRIN

A hand woven tag bearing the HIV symbol on sale at the Sokoni Market in Nairobi, Kenya. Credit: Allan Gichigi/IRIN

Living with HIV since the age of six, she wants someone else to make the decisions, “while I read a magazine”.

Milambo, says she got infected through a contaminated needle. She describes a life dominated by the fear of dying from AIDS but says the worst times are when she gets herpes flare-ups that make it hard to walk, talk or eat.

She skips school often due to “small illnesses” like colds which are usually accompanied by a bad cough that debilitate her body. Her grades are bad and she has little hope of obtaining a full certificate when she completes secondary school next year. “But that’s alright, I was not intending to go to college anyway.”

She has made no lasting friendships for fear that people will find out her HIV status. While her parents and a few close relatives who know her condition try to offer support, they actually make things worse, she says.

The statistics on Zambian youths with HIV

The UNAIDS 2008 report on the global AIDS epidemic estimates that of the one million Zambians infected with HIV, over 20 percent are youth between the ages of 15 and 25. The infection rate in youth has stubbornly remained at 17 percent in spite of many interventions from civil society and government on abstinence and prevention.

“I see them just age in front of me when I am sick, they get so stressed and sad, I prefer to suffer in silence.”

She hears how young people talk about HIV and AIDS and the level of discrimination and ignorance frightens her. “I can never confide in a young person that I am positive, the stigma would kill me faster than AIDS.”

Milambo envies other young girls going to movies, laughing, dancing. She has no time for that, she says, because she has to work to save her life. Instead she does ‘boring’ things like peer education for her local clinic.

Rather wryly, she says, “Though I say it’s boring, the clinic is the one place I feel comfortable at. As a peer educator I have the run of the place with no questions asked. So treatment and information for me is free and easy to get.”

It is also the place Milambo is looking for a husband. “Men at the clinic are knowledgeable and because they work around HIV, they are compassionate. When I turn 18 I will choose one. As head of household, my husband will make the decisions regarding our welfare, while I watch television or read a fashion magazine… being married would make me a ‘proper person’ because everyone aspires to be married, at least that’s the one thing I can achieve.”

James Banda also wants a normal life. The eighteen-year-old is openly living with HIV and confines himself to dating HIV positive girls because he hates having to explain to every new girl why he has to take pills on a regular basis. The girls usually run away from him after that, he says. “The ones that stick around see me as a charity challenge and I am their good Christian deed.”

Infected with HIV on his first sexual encounter, his life’s mission now is to find a girl with whom he can have a child.

Banda says after his diagnosis he did things ‘by the book’.

“I went for rigorous counseling, came out in a big way, telling anyone that would listen about my status, I did the whole nine yards. I was celebrated by NGOs who made me the poster boy of an HIV positive youth. But after a while, the novelty wore off and I got tired of always talking about HIV as if that’s what defines me.”

He says there are times when he wishes he had not disclosed his status. Like when he goes to a disco and people come up to him to caution him not to drink, or whisper that he shouldn’t be there, that he has not “learnt his lesson”.

“The books on living positively with HIV says I should continue to live as much of a normal life as possible. The reality is different; there can never be anything normal about my life.”

Bouts of opportunistic infections, always being on the lookout for a cure or better therapy, not being able to plan ahead ten or even twenty years are some of the things that make his life abnormal, Banda says.

Having passed his school leaving exams with distinction, he is going to college next year to study accounting. He says he has it all; the support of his family, a few good friends and good future prospects. But living with HIV ‘is still damn hard.’

Living with HIV in secrecy is what is harder still for Adam Malik*.

Drinking himself ‘senseless once in a while’ is how Malik copes with his situation. A Zambian of Indian extraction, he lives in the close knit community that refuses to acknowledge HIV in their midst and openly stigmatises people with HIV.

Eighteen-year-old Malik knows this only too well, that’s why not even his parents know that he contracted HIV at the age of 14 from the house maid with whom he had a sexual relationship for over a year, and has recently started treatment.

Malik says because he has always been a quiet solitary kind of person, no one notices when he is depressed or feeling unwell. He has not suffered any of the major opportunistic infections.

But, he adds: “Keeping such a secret is a heavy burden. I suffer tension headaches and have developed a facial tick from the stress.”

Malik says he is fortunate Zambia has an efficient roll out for ARVs. He was surprised how easy it was to get onto the programme. Of course he chose an out of the way clinic where no one was likely to recognise him.

He reads up on the latest treatments but does not go for counseling as he is scared of being recognised.

Malik is also frightened that he will be coerced into jumping onto the HIV conference circuit as a young HIV positive Indian male. “I will be a novelty that the AIDS activists will not be able to resist. They will show me around like a trophy. I have seen it happen to youth who have come out.”

His life on the outside has not changed, he says. He is still the good son, taking his mother and sisters shopping, helping his father in the family store, hanging out with the boys on a Friday night.

Soon a wife will be chosen for him and he will be expected to have children, he says. He wonders what will happen then. “It will kill my mother to know that I have HIV. My father will kick me out of his home. My sisters’ chances of a good marriage will be ruined. When I think of all this, I hit the bottle to forget.”

He knows that this will interfere with the efficacy of his medication, but finds it’s the only way he can cope. “I am frightened,” Malik says.

*Names have been changed.

 
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