Growing up with HIV

I first heard of Robinah Babirye last year. A friend told me about her.

“I want to introduce you to this girl. She is very special in her own way. You need to meet and probably do some write up on her,” stated my friend then.

When I asked what was so special about her, she said, “You will know once you meet her.”

My friend was supposed to send me Babirye’s phone number but this did not happen. The number was never sent and so I let it pass.

Meeting Babirye
Many months after that conversation, I heard of a one Robinah Babirye being mentioned on one of the local radio stations for having won a beauty contest dubbed The Y+ Beauty Pageant.

The event had been organised by the Uganda Network of Young People living with HIV (UNYPA), which focuses on ending stigma among, mostly, young people living with HIV. “Could she be the one?” I thought to myself.
A call to my friend comfirmed that this was the same Babirye she had told me about.

I eventually tracked Babrye down through UNYPA and we finally got to meet on a Sunday last month.

The meeting was at Kasalita hostel in Kyambogo, a Kampala suburb, where she resides. We sat in her room for the meeting. One of the things that struck me as she started to talk to me was her confidence. I could feel it just from the way she was looking straight at me. Her beauty also stands out, especially her flawless skin.

How she got to know about her status
Babirye and her twin, Eva Nakato, were born 22 years ago to Christopher K. Kaweesa, a school director, and the late Jane Nakityo.
As a child, she did not understand why they were constantly falling sick and had to take medication from time to time. But they finally got to know why at the age of nine. They were inside the house when their mother called them outside because she wanted to tell them something very important.

“It was late at night. We sat on a bench. Mummy sat in between Eva and I and held us tight before saying there was something wrong with us. That our blood was quite different from that of other people. That we had akawuka (the HIV virus),” Babirye recounts. Despite their tender age at the time, the twins understood what impact the virus had as they broke down and asked their mother many questions including how they had got it in the first place.

The explanation was that at a certain time during her pregnancy when she was expecting them, she was transfused with unscreened blood and only discovered after delivery.
“She said that’s how we had got it. She went ahead to thank God for us and emphasised that she loved us very much,” Babirye narrates.

At home, family members including their five siblings, all HIV negative, were supportive and life was fine. It was, however, a different story at school.

Coping with stigma at school
Throughout high school, Babirye had to build on lies whenever other students asked about why she was always sickly and taking medication. The constant probing for answers sometimes frustrated her.

“I got fed up to the extent that I even stopped taking my medication as regularly as I should have. I did not want other students to see me and come asking questions about the drugs,” she says, adding, “I had self-stigma. I feared people knowing about my status. I feared disclosure or anyone noticing anything unusual about me. I feared stigmatisation and started pretending to be in a world where I was okay and yet I was not.”

Babirye could not understand why out of all the people in the world, she and her sister were the ones infected.
She avoided the school nurse when she was sick out of fear that her blood would be tested and her HIV status discovered.

“There were times I would be so sick but I would never visit the nurse, I would insist that they give me permission to go back home instead which always made them suspicious,” she says.
Most times, the school administration let her go home and whenever she returned to school, she had to work very hard in order to catch up. The only people who knew about her status were her three close friends whom Babirye says kept it a secret.

Opening up
Even when she joined university in 2013, people continued to wonder about why she was always sickly and on medication, which was something she had tired of ages ago.
She had also met a lady called Asia Mbajja Namusoke at a workshop where the latter had advised that the best way to cope with living with HIV was to open up about one’s status. Babirye had kept in touch with Namusoke who became her pillar of strength.

“I guess the pressure had also gotten to me so I eventually started to open up about my status. Whenever someone asked me what was wrong, I would tell them face front about my status,” she says.

Some used this as an opportunity to stigmatise her more by calling her all sorts of names. “I was sometimes called a walking dead, a murderer and a sickler. Then, there was a time someone called me a devil,” narrates Babirye of the stigma suffered at University, especially when she had a misunderstanding with another student who knew about her status. “The words were harsh. The cross was sometimes too heavy to carry. I was really torn up.”

Her main source of comfort came from her twin sister, Eva Nakato who also lives with HIV, her immediate family and close friends. Her father would often remind her, “Everyone who is extraordinary has to be talked about since they are different from the rest.” Sadly, Babirye’s mother succumbed to cervical cancer in 2013, but Namusoke remains motherly to the twins and Babirye goes on to live a full life.

Moving on regardless
A third year student at Kyambogo University pursuing a Bachelor’s degree in Community-based rehabilitation says it is these tough past experiences that have hardened her over time. Today, she can face and take whatever is said to her.
Babirye is even dating, although she will not share much about that. “He is HIV negative though and I told him about my status as soon as I noticed his interest in me. He is always checking up on me asking how I’m doing,” she says.

On September 18, she was crowned Miss Y+ at an annual event that took place at Golf Course Hotel, which came with a full year study scholarship.

The beauty queen states that her plan now is to go out there and reach to other people infected with the disease through mostly sensitisation and advocacy work. “I want to empower other youth living with HIV. I want to tell them that they are not alone, we are in this fight together,” she says.

Babirye is also the programme officer at PINA (People In Need Agency), which prioritises making a difference in the lives of vulnerable children. Her advise to others infected with HIV is that having the virus is not the end of the world, especially if you adhere to a treatment plan.

The prevalence curve

The 2013 HIV/Aids Uganda country progress report indicated that the epidemic continues to be generalised and has not changed pattern in the last three decades.

The country achieved success in the control of HIV spread during the 1990s, bringing down the prevalence among adults aged 15 to 49 from a national average of 18.5 per cent in 1992 to 6.4 per cent, as reported in the 2005 sero-survey.

The 2011 Aids indicator survey in Uganda reported HIV prevalence at a national average of 7.3 per cent and important variations by sex and in specific regions.

The prevalence in the country has consistently been higher among women compared to men since the early years of the epidemic. Between 2004/ 2005 and 2011, there was notable decline in HIV prevalence among women in Kampala, eastern and central regions. These improvements may be a reflection of the penetration of effective HIV prevention interventions across communities in the respective regions.

The issues affecting these youths

Asia Mbajja Namusoke is the executive director of People In Need Agency(PINA), a Non-Government Organisation that strives to empower youth living with HIV. She shares some of the issues that affect these youth the most;

What is it like working with youth living HIV/Aids?
It is heartbreaking at times having to hear stories of how these children live their lives. Can you imagine that sometimes even their own parents shun them? It is such a sad thing.

What are some of the major challenges you have noticed affecting these youth?
Taking medication is really a tough thing for many of them. Just imagine having to take drugs every day. It is not an easy thing. Then, also, for some of these children accepting the fact that they are infected takes time. They live in denial and even refuse to take their medication, which affects their health in the long run.
What kind of help do you extend to them?
In different ways, including holding outreach programmes and counselling them. I have personally given shelter to some of those who have been deserted by their families.

And how do you feel society could help these children?
By not shunning them. Many times, people shun those they discover are living with HIV. That’s why you will realise that many of these children complain about stigma. It’s about time this came to a stop. These children should be treated like everybody else.

And your advice to youth living with HIV?
Having HIV does not mean the end of the world. Go out and achieve your goals and dreams. But as you do this, remember to always take your medication and be in touch with the doctors.