“My life through school was not easy,” Ismail Harerimana, an HIV peer counsellor and volunteer at Kabale Regional Referral Hospital blatantly says. “If you asked anybody who went through school as an HIV-positive student, they will tell you how challenging it is. It is worse when that student is in a boarding school,” he states.
Harerimana, 26, a resident of Kabale born and raised in Kashenyi village, in Kisoro District is one of the many children born HIV-positive. “In primary school, I would fall sick often but my parents did not know what I was suffering from, until 2008 while in Senior Two when I tested positive with HIV,” he confides.
To him, this was shocking since he knew that HIV was sexually transmitted.
“I was a virgin! Believing that I was positive was difficult. But I went through counselling with other children who were positive and I was encouraged, so I started coping,” he recalls.
School and treatment
Living a positive life is the way to go, but what does one do when their efforts to live positively are frustrated? Among things that over the years have been highlighted as pronounced in the fight against HIV is the stigma that still surrounds it.
As a matter of fact, stigma, discrimination and disclosure issues were identified as the most outstanding of all barriers to adherence to antiretroviral therapy and retention for adolescents in a 2015 study; Adherence to antiretroviral therapy and retention in care for adolescents living with HIV from 10 districts in Uganda. (US National Library of Medicine (journal).
Additionally, it is also this ‘finger pointing’ that forces many young people and adults never to let anyone know about their HIV status. This never spared Harerimana.
“Months after learning about my status, I shared with the school secretary about it. What shocked me though was that the secretary also shared it with the school matron, and the matron shared it with the school patron, who also shared it with some of the teachers, who also shared it, and before I knew it, the news was all over the school! I changed school. When I joined the new school, I kept it to myself. It was my secret,” he shares.
Keeping in the shadows
Though determined to keep his status a secret, Harerimana also wanted to stay alive and healthy while taking his ARVs but this, as he came to realise, was one of the most challenging tasks. “I had to take my ARVs twice a day, at 7am and 7pm but I had to make sure that my friends at school never got to know.”
“HIV cases were rare in school. It was not something students freely saw and talked about. For example, if someone just bumped into you taking medicine, they would have a thousand questions; and of course getting an explanation would be another problem,” he notes.
But 7am was also when everyone is up preparing for classes.
“I would be looking out to target that time when nobody is attentive and take my medicine. Sometimes, you would wait and still not get a good gap to take the medicine. And then I would miss that dose,” Harerimana narrates.
But whenever he got a gap, he would make sure he packs medicine for about a week or so in a paper plucked from one of his books; fold it and put it in his shirt pocket.
“The shirt with my medicine always stayed under my pillow at night. Of course, students used to ask me why my shirt is always creased but I would pretend and say, I did not like ironing. But most times I would be wearing a sweater,” he says.
Harerimana’s bad day was always Monday because it made it too hard for him to take his ARVs.
“We had a morning assembly. The only time I could get was when we were back to class. I would then ask for permission to go to the urinals and there, I took my medication at around 9am,” says Harerimana. But inconsistency in swallowing his medication would soon result into eye problems – causing him to be operated on twice.
Sneaking ARVs into school
However, challenges of taking his medication aside, he also had to sneak his ARVs into school unnoticed. Not because the school had a rule against it. He just did not want them to know.
“When you report to school, they have to check your suitcase. Remember, you have packed your drugs in your suitcase and all students’ suitcases are openly laid bare - it becomes hard. But I had a solution for this. I could get a lot of sugar, hide my ARV tins in the sugar and so they would think it is sugar,” he shares.
His next problem would then be going for treatment and checkup during the term. He recalls a time when his lies almost caught up with him.
“I told the head teacher that I was going to bank my school fees and he said I should instead give him the money and he banks it for me. I was in a dilemma. So I told him my parents were sending it to my friend’s mobile money number and I have to go withdraw it. He said he would call my mother and she sends it to him directly. I quickly call my mother and told her I have to get my drugs refill, so she found a way of covering up for me,” he narrates.
But these are not the only student struggles for HIV positive students.
Jellie, a Senior Five student at St Noah Girl’s Secondary School, says in the event that teachers know about your HIV status, they may not say it loud, but the student remains vulnerable.
“There is a way teachers communicate with you and treat you like you are disabled and are discriminated against in a subtle way. For example, you make a mistake and the teacher says, ‘Now look, you are the one who is weak, don’t you know that you may die? Now, what punishment will I give you? Others are carrying bricks, or doing hard work?”
Other students become suspicious about why you are being treated differently.
Moving past the stigma
today Harerimana is not ashamed of talking about his HIV status.
“I share this information so that I can encourage a young person out there,” he says. To do more, he decided to volunteer with the Elizabeth Glazer Pediatric Aids Foundation (EGPAF) as a peer counsellor.
“I was posted to Kabale Regional Referral Hospital to always attend to HIV-positive children and adolescents. I also give them health talks, basic facts about HIV, and how they can live positively —always giving myself as an example to adhere to taking their medication no matter the challenges,” says Harerimana.
He also believes that the ministry of Education and the Ministry of Health and their partners can work together to train, school nurses, matrons and teachers on how to manage HIV-positive students, “Otherwise, students are suffering to live positively in schools,” he says.