By Francis Musasizi
I was born into a family of three children: my sister, the oldest, and my brother, next in line. I was the last to be born, and we were all raised by our mother, a single parent.
I’ve been living with this epidemic since the day I was born. For the past 21 years, I’ve experienced real ups and downs because of HIV. For years, I had no idea I was HIV-positive: my mom had not disclosed to me, fearing that the status would worry me. All the same, I remember taking one tablet at 6 a.m. every day – and because I was thin, I faced all kinds of bullies at school.
As the years went by, my mom and I were introduced to Alive Medical Services. I met a loving lady named Dr Pasquine, the director of AMS, who welcomed me into the clinic with all her heart. I was then introduced to Lorna, the head of the Youth Wing.
Since then, Lorna has played a big role in my life; she introduced me to a group of youths who were like me. The youths were a part of the Victor’s Club, AMS’ group for HIV-positive youth. We would chill together, have fun, and entertain ourselves. Finally, I knew I was in a safe place, and AMS became my second home.
By that time, my mom still hadn’t disclosed to me. I was in that curiosity stage of life, where I would ask my mom a series of questions.
“Why am I taking this pill every day?” I would ask. Eventually, she told me the truth, and explained how important that pill was to my life.
When she told me I was HIV-positive, I was shocked. I wondered how I would keep swallowing this pill, every single day, for the rest of my life. With the help of my fellow youths at AMS – and the awesome counsellors who had my back – I realized it was possible.
Even so, returning to school after discovering my status was difficult. I was terrified of how others would think of me. At times, I would skip my medicines. And sometimes, I would go through moments when I started to give up the fight. I became quiet at school, as I didn’t want to share anything with my peers; I started viewing my status as an impediment to my academic performance. However, every time I would feel down, I would call one of the counsellors at AMS.
A few years later, a community music leadership training program came to AMS. The program was launched in partnership with Musicians Without Borders (MwB), the goal of which was to use music to fight stigma. Along with 28 other youth, I went through a series of training at the clinic with MwB. At the end of the program, we were awarded certificates and became community music leaders.
Our newfound knowledge enabled us to provide music training during youth days, children’s days, and additional days during the week, something I’ve been involved with ever since. We would gather with children and lead music sessions, so by the time the client saw a doctor, they would have participated in our session. These sessions had a big impact on clients’ health, as many of their viral loads became suppressed after participating.
After the community music leadership training program, I started believing in myself. I knew I had nothing to change regarding my status, so I embraced it. I accomplished this with the help of my fellow youths at AMS, who always visited and backed me up when I felt down.
My message to all the youths and adolescents living with HIV out there is not to give up on your dreams. We also have bigger dreams to chase, just like any HIV negative person, and we shouldn’t lose hope. We can make it to the stars and beyond if we adhere to our prescriptions and exercise positive living.
On January 30, 2018, Catherine’s second-born daughter was confirmed HIV negative.
A clinician smiled as she brought Catherine into the treatment room, embracing her to celebrate the good news. Ever since she realized she was pregnant, Catherine had worked hard to ensure the baby, Charity, wouldn’t contract HIV. She received continuous support from AMS staff to prevent mother-to-child-transmission of the virus, and faithfully adhered to her medication.
“I’m so relieved,” Catherine said. Charity smiled in her arms, almost as if she was relieved, too.
The joy in the room was tangible. But it hadn’t always been this way for Catherine and her family.
When Catherine gave birth to her first-born daughter, she went to live with her mother and extended family in the village. As Catherine recovered from the delivery, her family helped her with the baby. Her husband stayed in Kampala to work – and during that time, he contracted HIV from another woman.
Catherine returned to Kampala after three months in the village, unaware of her husband’s infidelity or illness. She put all her time and energy into caring for her daughter. And when the two of them fell sick, she assumed it was a temporary bug, or at worst, malaria.
Catherine tested HIV positive at a health facility near her home. Her neighbour urged her to get another test at Alive Medical Services – and after her diagnosis was confirmed, the doctors tested Catherine’s daughter, who was also diagnosed HIV positive.
“I was shocked, but there was nothing to be done except to begin treating myself and my daughter,” Catherine said. “I convinced my husband to get tested, but he never accepted his diagnosis. For me, the only option was to stay strong for my child.”
Catherine has since separated from her husband, who refused to get treatment and was inhibiting Catherine’s own progress. By continuing to visit AMS for check-ups, Catherine’s viral load is suppressed, and her first-born daughter – now three years old – is stable and healthy. Catherine now works as a farmer in her village, where she grows fresh produce for her family and sells whatever is left.
“My advice to other HIV-positive single mothers is to do as much as possible to support your children,” Catherine said.
Hassan found out he was HIV positive in 2010. He and his wife had long split up – but when he found out she had passed away, Hassan had a feeling he knew why.
“My brother is a doctor in California,” Hassan said. “He tested me for HIV years before, but didn’t tell me the truth because he was scared of my reaction. Deep down, I knew what he couldn’t tell me.”
Eventually, Hassan visited Alive Medical Services to be tested and treated for HIV. At first, the medication made him dizzy, weak, and drowsy – but after speaking with the doctors, he was switched to the same antiretrovirals he has been on ever since.
“When I first found out I had HIV, I was heartbroken,” Hassan said. “I was in denial until I went through intensive counselling at AMS. They helped me work through what I was feeling.”
Because he hadn’t felt symptoms until a few months before his diagnosis, Hassan had no idea the virus had also touched his daughter. She was just 12 years old at the time she was tested, and at such a young age, Hassan was unsure how to tell her the truth.
The two developed an unspoken routine: Hassan and his daughter would take their medication together in the morning. It wasn’t until Hassan’s daughter saw another student at school taking the same medication that she started asking questions.
Understanding the value of proper disclosure, Hassan sought support from the AMS counseling department. He sat his daughter down to tell her the truth, finally revealing the secret he’d been keeping for two years.
“Will we die?” Hassan’s daughter asked.
“No,” Hassan answered. “If we keep taking our medication, we will live long, healthy lives.”
Today, Hassan’s daughter is an activist in her community. She takes after her father, who is outspoken about HIV, stigma, and the availability of free HIV resources both in person and online. By speaking out about HIV at school, Hassan’s daughter has mentored a number of HIV-positive children, helping them adhere to their medication and stay optimistic about their futures.
“She’s strong and vigilant,” Hassan said. “I couldn’t be prouder of who she has become.”
When Nadia was 10 years old, she was hospitalized for an entire month. She had no idea she was HIV positive until months later – and she didn’t realize the weight HIV carried until she returned to primary school.
“My teachers would always say you can’t do this, you can’t do that,” Nadia said. “They acted like I was so fragile. Like I could faint at any moment.”
For months, Nadia felt isolated. The kids at school didn’t understand why the teachers treated her the way that they did, and Nadia couldn’t understand it either. When she took her medication, she felt fine – but for some reason, her teachers thought she was anything but.
Tired of all the special treatment, Nadia stopped taking her medication, hoping that everyone would treat her like a normal person again.
Once Nadia’s mother realized what her daughter was doing, she brought Nadia to Alive Medical Services (AMS) for counselling. Day after day, Nadia sat with the counsellors, and they spoke to her about good adherence and living positively. Soon after, Nadia began engaging with the Victor’s Club, AMS’ youth program for adolescents living with HIV.
“When I got to secondary level, I started to let it go,” Nadia said. “I thought to myself: I have HIV. That can’t be changed. And I can live with that.”
In time, Nadia began singing, dancing, and making friends at Victor’s Club. This past summer, AMS staff trained Nadia to become a youth peer educator, giving her the skills to counsel other youth living with HIV, and refer them to the clinic for treatment.
Now 18, Nadia hopes to attend university next year. Eventually, she hopes to become a counsellor for HIV-positive children herself.
“I want HIV-positive children to know that living a positive life is not that hard,” Nadia said. “You can live beyond other people’s expectations. You can achieve what others can achieve, and more. It’s important not to be afraid.”
Ever since school let out, Nadia has spent her days volunteering at AMS. She helps measure the weight, height, and health status of children at triage, working alongside the nurses and helping whenever she can.
“I want to work with children because they are the future of tomorrow,” Nadia said. “They should know that HIV can’t stop them.”
Peace’s mother sold her and smiled.
“You don’t belong to anyone,” she said, looking down at the girl as she was forced to take off her clothes. Peace wrapped a red piece of cloth around her waist, not understanding where her mother was going, or why she had taken her here. Children peered out at her from behind the legs of adults, fear etched into every one of their faces.
“You’re going to die here,” her mother said.
Peace was just 7 years old. But in her head, she silently spoke her response.
Trust me, Mommy, she said. I will not die before you do.
This woman was not Peace’s mother. But when she first found Peace sleeping on the streets of Rakai, that’s exactly who she said she was. The woman cleaned Peace up, fed her dinner, and made her feel comfortable in her home, a large house far from the village 5-year-old Peace had initially fled.
“From this day forward, I am your mother,” the woman said. “You don’t have to worry anymore.”
Peace never knew her biological mother, but her last adopted family had forced her to sleep on the cold, hard ground outside their house. Peace’s new mother sent her to boarding school.
Though Peace was thrilled to go to school, she was anxious to see her mother again. She hadn’t been feeling well, and she was worried it was related to the fact that she wasn’t taking her medication anymore. Peace didn’t know what the medicine was for, but for as long as she could remember, the medicine had made her feel better. At her last home, Peace had been forced to clean the house, wash clothes, and scavenge for food — but she did swallow pills every day.
The holidays grew nearer, and returning home consumed the young girl’s thoughts.
“As time went on, I found out that my mother tried to pay the teachers to keep me at school,” Peace said. “But they kept telling her: you need to pick up your girl. Finally, she did.”
Back in Rakai, Peace’s reunion with her mother was short-lived. The woman left her with some food and water, and told Peace she’d be back in a week. When the woman’s husband found Peace at the house unaccompanied, he threw her out of the house, threatening to kill her when Peace tried to explain that the woman — his wife — was her mother.
Peace had no choice but to go back to the streets. For weeks, she shuffled from empty building to empty building to find somewhere to live, doing everything she could to get enough food to survive. Despite the last encounter she had with the woman’s husband, she felt like she had no choice. She went back to the large house to ask for help.
Once she got there, Peace collapsed into the woman’s arms. Her husband wasn’t home, but he would be returning, she said. The woman dried Peace’s tears and held her close.
“Don’t cry,” the woman said. “I’m taking you to live with my sister.”
The woman brought Peace into a forest, claiming her sister had a large house of her own just a short distance away. The woman forced Peace to walk for hours, pressing her to continue until they finally reached a clearing in the woods.
The area was filled with dilapidated thatched huts. Peace had no idea where she was, or more alarming, why a wealthy woman’s sister would live in the depths of the forest. Her questions wouldn’t be answered until days later, when another young girl dressed in crimson explained where they were — and what they were doing there.
Before long, the woman was walking toward home with a money-filled envelope.
Peace was walking toward death in a child sacrifice camp.
Today, Peace is 18 years old. Peace is a survivor — not only of poverty, violence, homelessness, and attempted murder, but also, of HIV.
After three months of trauma, Peace escaped the child sacrifice camp and boarded a taxi to Kampala. Weak and undernourished, she was soon back on the streets. She was rounded up with a group of other street children and sent to live in a police cell. When no one came to pick her up, Peace spent three years in a children’s prison.
Every day that passed, Peace’s health deteriorated more. Peace hadn’t committed a crime, but she also didn’t have a home. Without anyone to care for her, she remained in prison until she was adopted once more at the age of 11.
By that time, Peace had been without her medication (which, she later found out, was HIV treatment) for more than six years.
“The doctors thought I had brain damage because I was so sick,” Peace said. “I was finally adopted into a real, kind family, and my mother brought me to see Dr. Pasquine.”
AMS doctors tested Peace for HIV. When she tested positive, they started her on antiretroviral treatment. Thought her parents told Peace that the medicine would keep her healthy and strong, she didn’t realize she was HIV positive until her parents disclosed to her at the age of 13.
“I was terrified,” Peace said. “I had already gone through so many things. You wouldn’t even know I could speak because I was so quiet, I refused to talk.”
Peace became unconsolable. Unwilling to accept her diagnose, she stopped taking her medication. Peace’s parents brought her back to AMS for counseling, and while she was there, the staff introduced Peace to the Victor’s Club, AMS’ program and peer support group for youth living with HIV.
After interacting with doctors, counselors, and her HIV-positive peers, Peace realized her life was far from over. She kept returning to AMS for Victor’s Club meetings and treatment, and slowly, she began to open up. She started talking not only about her past memories, but her future fears.
Finally, Peace said, she had found a place where she could just be herself.
“I never had friends before Victor’s Club,” Peace said. “Once I started coming, things really changed. Now, I’m so social — everyone here knows me.”
Today, Peace counsels younger children involved in Victor’s Club and organizes meetings for her peers. She feels stigma free, she said, and openly shows her medication to anyone who asks about it.
Though Peace’s family has moved to Entebbe, she continues to come to AMS for Victor’s Club meetings, treatment and medication, and other AMS initiatives, such as last year’s music therapy program. Over the summer, Peace was trained at AMS to become a youth peer educator. At this training, she acquired the skills to help HIV positive children and adolescents in her community, and has since helped a number of HIV positive youth in Entebbe find clinics close to their home.
“I love being involved because I am one of them,” Peace said, speaking about the other HIV positive youth in the Victor’s Club. “I used to be like them, refusing to take the drugs. Now, I am healthy. I can help them.”
Peace is now studying counseling at her university. After graduation, she wants to become a minister, spreading messages of love, health , and hope not just in Uganda, but around the world.
“Having HIV is not my fault,” Peace said. “There’s nothing to be done about it. You have to accept the life you were given, and move on.”
Henry’s wife passed away 25 years ago, but looking at him now, you’d think it happened yesterday. His body stiffens as he talks about her, pausing every so often to extract himself from the memories passing through his head.
“We didn’t know until it was too late,” Henry said. “And after she passed, everything changed.”
Back in 1993, Henry had barely realized what happened until his wife was gone. Henry contracted HIV from another partner and unknowingly passed it along to his wife. After she died, Henry was left to care for four children and his elderly mother, all the while battling HIV himself.
At the time, HIV was severely stigmatized in his community, making it difficult for Henry to openly seek help and treatment.
Henry would walk from health clinic to health clinic attempting to find antiretroviral medication. More often than not, he’d reach the pharmacy counter just to be turned away. It seemed that there were never enough antiretrovirals for everyone suffering, causing Henry’s health – and the wellbeing of his family – to drastically decline.
“I was so depressed during those years,” Henry said. “It was hard to get medication, and it was frustrating to have nowhere to go for help.”
Poor health, guilt and depression began to consume Henry, making it nearly impossible to work, feed his family, and gather the strength to keep on living. When he and his youngest son, Richard, came down with tuberculosis, they could barely afford the medication they needed to stay alive.
Eventually, a friend referred Henry to Alive Medical Services, a small clinic that had just opened up near Henry’s house. He has remained an active client ever since, returning again and again for treatment over the last 10 years.
“Without Alive, I wouldn’t have made it,” Henry said. “I’m healthier now than I’ve ever been, not just because I get free ARVs, but because I get free treatment of opportunistic infections too.”
After his health stabilized, Henry was able to recommit himself to his children, all of whom are HIV negative. Henry worked constantly to earn enough money for school fees. Because of that, his first three children now have families of their own – and his youngest son, Richard, just recently finished his degree. Richard now works as an electrician, and routinely accompanies his father to the clinic for check-ups.
“The counsellors at Alive helped me be strong for my children,” Henry said. “For any single fathers dealing with the same situation, I’d tell them this: push hard for your children.”
Thinking of his past, Henry recognized that often, men avoid HIV clinics. They don’t want to be seen there, he said, but they need to be more open to the idea.
“There’s nothing wrong with getting tested and treated,” Henry said. “It keeps you alive. Today, I’m proud to tell my story and show people how I’ve survived.”