While overt discrimination of people living with HIV has decreased, stigmatisation still remains. Very few people will willingly reveal their HIV status because, as Sharifa Nalugo found out, it leads to negativity and isolation. One of Nalugo’s worst childhood memories is of being homeless.
“My father died when I was one year old. We were broke and could not afford to pay rent so my mother decided we go and live with her father in Nateete. He gave us one of his rentals and we settled in, but everything changed when he learnt that my mother and I were HIV positive. One morning he stormed our house and ordered us to leave immediately and never to contact him. We were as good as dead to him,” Nalugo relates with sadness.
At the time, Nalugo did not know her status since her mother had never mentioned anything to her. But she remembers being sick all the time, which earned her the nickname kamusujja and being shunned by fellow children who were forbidden by their parents from playing with her because of the visible body rash. “This shunning saddened and traumatised me so much. I felt unwanted and isolated. I wished to belong and be part of a group,” she says.
One time one of her mothers’ friends noticed the rash all over her body and the persistent cough. She advised her mother to take her to Joint Clinical Research Centre (JCRC), which was then in Mengo where she tested positive for HIV in 2011 while in Primary Seven. “I was given drugs which my mother said would cure the cough so that children do not laugh at me each time I coughed. She convinced me that when the cough and rash were gone I did not have to take them anymore,” Nalugo recalls how her mother tricked her into taking medication.
When she had learnt more about the disease, she asked her mother how she had got the infection but most importantly she was worried about whether she would ever be able to marry and have children of her own. “My mother was visibly distressed by my questions. She told me my father had infected us with the disease before breaking down in tears. Seeing my mother that helpless and distressed birthed in me a need to become strong, not just for myself but for my mother too,” she states.
Discovering a haven
JCRC soon became Nalugo’s second home. She was happy to finally find agemates who accepted and were happy to play with her. For the first time in her life she shared toys and played games without being made to feel conscious about her cough and body rash. “I had never been happier as I played with other children. We were given very tasty food too. Because we did it in a group we would not find any problem with taking our medication and we often went back to our games immediately,” says Nalugo.
Nalugo also started attending counselling classes at JCRC although she did not make much sense out of them. She recalls seeing people of different age groups but mainly the youths and agemates.
“We were told that people with HIV are supposed to take their medicine every day as long as they lived, but I naively chose to believe my mother’s promise that I would stop taking my medication once the cough and rash went,” she recounts.
But as she got older and studied more about HIV/Aids, including the signs and symptoms of the ailment and the different preventive measures, she realised the importance of taking medication daily for life.
Fighting the stigma
After scoring Aggregate 11 in her Primary Leaving Examinations (PLE), Nalugo’s dream of joining Kings College Buddo was shuttered.
“However, I still pestered my mother to let me join a boarding school. But with my condition, she was hesitant,” she says.
She was later taken to Clive College, Kireka where her elder cousin was, so that she would help her take her medication daily and on time. As a precaution, the school’s head teacher was informed about Nalugo’s health status. Her classmates on the other hand did not know her status until a few started questioning her about the medication she kept receiving from her cousin.
“My cousin Irene was very efficient and strict about me taking my drugs. She did not think twice about shouting from the end of the dormitory to remind me as long as it was 7am or 7pm. Very soon my fellow students started whispering about it,” she relates.
To silence the whispers Nalugo and her cousin told everybody that she had a heart condition for which she needed to take medicine daily. But the lie crumbled when her cousin left the school and someone else was needed to take over the responsibility.
“Coping without Irene was hard. I was very playful and kept forgetting my medication and before the term closed, I started falling sick and was sent home,” she says.
Nalugo’s mother later entrusted the school matron with the medication since she needed an adult to keep reminding her.
The matron did not have Irene’s patience or tact. One day after searching for Nalugo endlessly to take her medication she lost her cool and let the cat out of the bag.
“I remember hearing her shouting “Sharifa, why should I keep looking for you to take your medication? Do I need to remind you that you are HIV positive?” In the school cafeteria. Everyone stopped what they were doing and turned to look at me. I was beyond mortified. I wanted the ground to swallow me, I felt tears pouring from my eyes as I meekly followed her to her office to pick my drugs,” Nalugo relates with emotion.
From that day onwards, Nalugo became the talk of the school.
“There were rumours everywhere about me. Even when I continuously denied, no one seemed to believe me. Friends started distancing themselves from me by refusing to sleep or sit next to me as well as stopped using any of my personal items,” she says.
One day when she was asked to lead prayers during one of the assemblies, Nalugo, who was 14 years old at the time, used this opportunity to confirm the rumours about her status.
“What the matron said is true. I was born with HIV/Aids,” Nalugo says.
The revelation took everyone by surprise. She lost some friends and gained others, especially those who had the same status as hers.
“I remember a group of five students approached me respectively saying they were also HIV positive and on medication. However, the school administration had no idea of their status,” she says. These became her new friends and they dealt with the stigma (from the other students) together.
The effect of the revelation
Unfortunately, the rumours affected her performance as her grades starting declining. Despite the academic setback, Nalugo was promoted to Senior Two. Over time, she concentrated on her academics and her grades improved, scoring Aggregate 23 for her Senior Four.
She returned to the same school for A-Level where she scored 15 points in Senior Six. In 2016, Nalugo graduated with a bachelors’ degree in Industrial Art and Design from Uganda Christian University (UCU) and today owns a fashion house called Shifastar. She also works as a peer educator and peer supporter at JCRC, helping people deal with stigma.
“I teach and encourage them to accept themselves because it is the only way to conquer all,” she remarks.
Becoming miss Y+c
During her time in university, in 2014, Nalugo started sensitising course-mates about HIV/Aids. She was later called upon by Dr Winnie Nansumba from Mildmay to contest in the first ever beauty pageant of youth living with HIV that was organised by the Uganda Network of Young People Living with HIV/Aids (UNYPA).
“One of the things that helped me qualify was that I was open about my status and helped fellow youth overcome stigma,” Nalugo emerged winner of the miss positive beauty pageant in 2014.
She says during this contest, she learnt that information was key.
“I learnt that it is important to accept yourself and also, it is important to bear in mind that Aids does not easily kill as long as one sticks to medication,” she says.
About the pageant
The beauty pageant was started in 2014 targeting HIV positive youths between 16 and 25 years. She says the pageant is organised by the Uganda Network of Young People Living with HIV/Aids (UNYPA) and takes place annually.
The theme of the pageant is beauty with zero discrimination and both sexes are considered because they all face the same challenges during stigma. “During the pageant, we show victims how they are supposed to look; even though you are positive you need to stay beautiful rather than malnourished and miserable,” she says.
Stigma and discrimination are real but Nalugo says each time youths come together for such functions, they learn how to cope thanks to peer support, counsellors and doctors.
Hopes of marriage
“Currently, I am single and I am still working on a number of projects but I have dreams of starting a family one day. My partner can be either positive or negative, as I have learned how to suppress the virus in both situations,” she reveals,