Uganda: One Man's Battle With the Stigma of Being HIV Positive

Kampala, 25 January 2012 (allAfrica.com) - The melodies were sweet, and the words tugged at the heart. They caused tears to well in many people's eyes, but they were tears of joy, and victorious applause, for the children.

"It will go, HIV will go, it will go and we shall always stay," they chorused.

"A child positive like me, can become an important citizen, don't abandon them," they cried out. These were the voices of the Stigmaless Band, an initiative of Joint Clinical Research Centre (JCRC) during last year's World Aids Day celebrations.

The young men and women have outlived the stigma through singing, dancing, laughing, while speaking to and for other children out there, who are HIV-positive and think that their life has come to a standstill.

Vincent Byabashaija, the vocalist in the band, is a living testimony of JCRC. At 12 years of age, he lost his parents. The death of his mum particularly stands out. He was nursed with the help of his grandmother. When she passed on, he was told that it was a result of malaria.

Sickness hits

After burial, Byabashaija was taken on by an uncle. That was the beginning of a new reality in his life, a reality that he has lived with. In no time, he became sickly and was admitted at JCRC. He was diagnosed with TB and crypto coco meningitis. After four months in hospital, he was ready to go home, not alone, but with what he terms as a sack of drugs. Unknown to him, he had tested positive for HIV and had been started on ARVs.

As Byabashaija grew older, he was nagged by the strictness of his guardians in regard to his drugs. Whenever he went to JCRC to pick his drugs, the charts he read, the forms he filled, the talks he got were in regard to HIV. So, was he HIV positive? No one was willing to give an answer to this question. His guardians dodged it, and so did the counsellors and doctors.

Byabashaija decided to abandon his drugs. His CD4 count dropped and he fell ill. He was admitted at JCRC and after about four months, he got better. He was encouraged to take his drugs, but still, with no clear explanation.

When he went for his next clinic visit, his CD4 count had greatly risen. Every one was excited for him. Byabashaija hoped that since he was fine, he would not be given more drugs. To his surprise, he got another "sack".

"I wasn't a child anymore. I wanted to know why my life was committed to drugs. I went and visited a doctor who referred me to the counsellor. The counsellor told me to go with my parent," Byabashaija recounts. When he got home, he made up a story. He told his aunt that the doctors wanted her urgently the next day to discuss very important issues. This was a serious summon, which called for immediate action.

The next day, Byabashaija, together with his aunt made for the JCRC clinic. With him, he carried the drugs he had received a few days back. When they arrived, he placed the drugs before the counsellor and his aunt and assured them that unless he was told the reason for his continued medication, he was going to stop taking drugs; after all, he was fine.

The truth comes out

"They were very scared, because of the serious tone in my voice and the expression on my face. But I had had enough. I wanted to know the truth." "After a lot of 'hmming' and 'mmming', they told me that I was HIV positive and that I had contacted the virus from my parents."

Though he had suspected this, its confirmation was no easy news to digest. "I bent towards the table, and reminisced all the hard times of illness that I had been through. I asked God to forgive my parents and I committed myself to taking my drugs.

And so now, through music, Byabashaija and the Stigmaless Band have encouraged young people to avoid high risk sexual behaviour; they have shared experiences with friends, laughed and danced. Byabashaija is an example to his peers. If some one is not taking their drugs or wants to stop, they are advised to ask Byabashaija what he went through when he was bedridden.

When Byabashaija learnt he was HIV positive, he thought that his childhood dream of becoming a designer had been crushed. He thought that he would not study and that that would be the end of his life. However, after overcoming stigma, he enrolled for a designing course. He is now a graduate and has set up a tailoring and fashion design shop in Ggaba, a suburb.

Being born with HIV has not made him less of a human being. In one of his clinic visits, he could not help noticing a beautiful girl, Helen (name changed for confidentiality). She is also HIV positive. They kiss, hug and enjoy each other. However, the cardinal rule is "no condom no sex". They look forward to marriage and bearing children who are HIV negative, thanks to Prevention of Mother to Child Transition (PMTCT).

Byabashaija's word to people out there is, "It has never been our intention to spread HIV to the negative people. It's our prayer that HIV stops with us. People should stop taking us on face and age value. Thanks to ARVs, we look very beautiful and handsome. And even when we disclose our status to you, you rubbish it off. You ask stupid questions like, 'Where did a young person like you get the virus?' The answer is, from our parents. "The other reality is that we cannot keep declaring our status. Please take an HIV test before you have a sexual relationship," he states.

Source: allAfrica.com