Robinah Babirye’s neat university room seems to be the go-to room for neighbours in need of anything.
Yet even as the winner of this year’s Miss Young Positive (Y+) beauty pageant, Babirye is not just another pretty face. She is a peer educator on how to live with HIV, since she also has the virus that causes Aids.
Her life story is an example of how, unlike in the past, HIV-positive people can live normally and be by society.
“While I want everyone to know I have HIV, I do not want to be taken as a special- needs person. People think that if they give us excessive care, we feel good; instead, they make you feel like you are a dependant,” she says. “Even in school, because the teachers knew I was HIV-positive, they did not want to punish me but I always insisted that they did.”
Her dotting boyfriend (names withheld on request) raises concerns when he sees her smartly dressed and leaving the hostel. He asks where she is going, as though afraid I could take his girlfriend away. She assures him that we are only taking a walk.
The 22-year-old Kyambogo University student learnt she was HIV-positive at nine years of age when her mother disclosed to her and her twin sister that she delivered them after being infected with HIV during a blood transfusion in 1994. At the time, blood wasn’t screened before transfusion, neither had measures to prevent mother-to-child transmission of the virus been introduced.
“Growing up with HIV was hard. Having to take lots of medicines daily yet I was told the disease I had was incurable was demoralizing and yet I could not tell people about it,” she says.
With no hope, Babirye dodged taking medication so her body developed resistance to the first line of antiretroviral treatment (ART). She was consequently moved to the second line of treatment and warned that she would die if she did not adhere to the drugs.
At the time, third-line ART had not been introduced in Uganda. It was then that she realized that her life was in danger and made steps to change it.
BABY STEPS TO DISCLOSURE
The first person she told about her status was her childhood best friend at Kiryokya Parents’ School, who supported her. Other students only knew it through rumours after seeing her swallowing tablets every day although she told them she suffered from cancer.
However, by the time she finished her secondary school studies, she was so tired of deceiving her other friends and taking medication in hiding that she decided the path of transparency was the right one.
“In my senior six vacation, I bought a cute T-shirt with the words “I AM HIV POSITIVE” written on it. I took a picture wearing it and posted it on my Facebook wall. I made so many new friends that night with the biggest number applauding me for my courage,” she intimates.
The support she received from social media encouraged her to venture into advocacy. Her life changed overnight when organizations began looking for her. Soon, she was appearing on television and on radio shows, addressing issues of positive living among the youth.
LOVE WITH HIV
But while the world knew about her status, her boyfriend was the one person she had not told about her status. He was unaware of her life as an advocate.
Their relationship had just started and she did not know how to disclose to him.
Later when she confessed, he was broken but he accepted her. Although he is HIV-negative, she hopes they will get married and have at least four children.
FRIENDSHIIP WITH HIV
While Babirye’s disclosure was of her own volition, her twin sister, Eva Nakato, faced it rough because she had no control on how her schoolmates got to know about her HIV status.
“I fell sick, but I had forgotten my medication at home. My cousin, who did not know they were ARVs, just carried it in the open in a rush to help me. But some students and the nurse who saw them knew what ARVs looked like and very soon, everyone knew,” Nakato says while cuddling her four-month-old baby.
Her skin, just like Babirye’s, is strikingly smooth.
“I realized there was nothing to hide anymore,” Nakato says of her decision to tell her friends she, indeed, suffered from HIV.
However, both girls concur that friendship has been hard since they are never sure whom to trust.
Nakato says: “Most of my friends blame me for not disclosing to them sooner. There are others who, when disclosed to, now consider you a burden. I now tell them I am HIV-positive and ask if they are ok with it. And most of them just take it lightly.”
She, however, adds that out of ten people she discloses to, only three accept her without hesitation. Most begin pulling back after some time.
“In boarding school, I told some of my close friends and they stopped using my utensils,” she says. “Today, it’s different. People can now even touch me because they are aware that HIV can’t be transmitted through touch. The only thing I do not like is when they get shocked that I look good yet I have HIV.”
“Out there somewhere; alone and frightened,” goes the opening line to Philly Lutaaya’s 1989 hit song, Alone. Lutaaya could not have described the struggle of HIV-positive people any clearer. Babirye says what kills HIV- positive people the most is having no one to confide in.
“It is not easy living with HIV. You suffer depression, low self-esteem, loss of interest in leisure activities and feelings of hopelessness from time to time. It becomes easier once you tell people you trust. You get genuine friends who love you for who are and they also help you adhere to the medication,” Babirye says.
Singer Moses Nsubuga, also known as Supercharger, who has lived with HIV for 21 years, says a bigger population has moved away from fearing HIV-positive people to embracing them due to available interventions.
“When I found out I was positive, people did not want to associate with me because they thought they would get infected too. There were also so many misconceptions about the disease,” he says. “People now [also] know that not all infected people get it through leading reckless sexual lives.”
Other efforts like the Miss Y+ (Young Positive) beauty pageant, that only accepts contestants living with HIV, have also changed the face of HIV.
“Seeing that people with HIV are equally beautiful, talented and not scary as most people think, has helped [with acceptance]. Also seeing these youths coming out boldly to tell the world they have HIV has earned them respect in a society where they would have been shunned,” explains Jacqueline Alesi, the pageant’s proprietor.
Ever since Babirye won the pageant, she has received numerous calls from people asking how she managed to stand up and declare her status. Some have told her they wish to also tell people of their status because they are tired of keeping it a secret but don’t know how.
Many people with HIV still live closeted lives. In fact, when the Y+ pageant was announced, a 50-year-old HIV-positive woman who prefers anonymity was alarmed.
“Why would they organize such a pageant? Who will even contest in such? Are they glorifying HIV? I would never take part in such because I do not want people to know my status,” she said.
But that is the difference in generations. The older generation seems to think secrecy is the way to go, while the younger prefer openness in fighting the pandemic, since physical appearance and chastity are no longer guarantees of an HIV-negative status.
Children born with HIV in the 1990s are now young adults or teenagers ready to date and marry. The more openness, the better.
Angela Namutebi, a 21-year-old senior six dropout, says she went through her school days without telling anyone she was HIV- positive and has lived a lonely life.
Her discovery of her status was hard since her mother was determined not to say what ailed her.
“She always gave me medicines to take but didn’t tell me what they were for. One time, during a science class, I asked the teacher if I was a drug addict since I took drugs daily,” she recalls.
While her teacher was understanding, the school’s head teacher gave Namutebi her first emotional stabbing.
“I was sick and needed a leave chit to go and get medicine from home but he barked at me, saying: ‘I hate people like you who have such diseases. Why did they even bring you to my school? You are useless!’” she remembers.
In a bid to understand why the headmaster hated her so much, she refused to take any more medication in order to coerce her mother into telling her what she suffered from, but she still refused.
The then 12-year-old Namutebi ran away from home to her aunt’s home. Her aunt convinced her mum to tell her. The third-born of five children, Namutebi was told she was the only HIV-positive child, something she has never understood.
“I thought I was cursed. Why me? I was angry at my mother and told her she didn’t love me. I did not go back to her for about five years,” she confesses.
Namutebi sunk into a sea of self-loathing, feeling not good enough. Her life changed when she attended a function at 19 years. She was inspired on seeing a choir of HIV positive children singing.
“They looked healthy and had big smiles on their faces and danced so well. I wondered what made these children so happy yet they were sick,” she says. “After performing, they were deep in conversation and seemed like a family. I [wanted to be] like them.”
She followed them and asked if she could join them. She discovered they were from People In Need Agency (PINA), an organization that caters for HIV- positive youths. Her life changed when they welcomed her to join them.
“There is a way you feel so happy. It’s like having another family that understands you because they are just like you. You even get to laugh at your different experiences with the virus,” she says with a smile, glad her lonely days are behind her.
Namutebi encourages HIV- positive youths: “You may leave your drugs because there is no one to push you to take them. It may lead you to self-imposed seclusion and suicide. Counseling is good but you will always need someone to hold your hand through it. The greatest threat to our lives is not HIV, it is stigma and the worst kind of stigma is internal stigma.”