First-hand: Why youth voices matter in HIV conversations

For a long time, HIV was not something people spoke about openly. It was something people whispered about. Something people judged. Something people feared. That is how my understanding of HIV began. 

When I was in Grade 6, I lost my best friend. At the time, I did not know she was living with HIV. I would see medication in her home, but I did not understand what it meant. 

A few years later, I lost my aunt to HIV-related illness. It was only later, in school, when community health workers came to speak to us, that things started to make sense. They showed us the same medication I had seen before. That is when I began to understand. 

But even then, HIV was not something people talked about openly. In my community, it came with judgment. People made assumptions. They attached shame to it. They also attached morals to it. That shaped how I saw HIV growing up. 

Why I started speaking about HIV 

Those experiences stayed with me. They showed me how much fear and silence can shape what people believe about HIV. They also showed me how many people are left without the right information. That is what led me to start working with young people. 

Today, I work as a community practitioner, facilitating dialogues, peer education sessions and outreach activities. I help young people access sexual and reproductive health services and create spaces where they can speak honestly. Because many still do not have those spaces. 

One thing I have learned is that young people listen to each other differently. Peer conversations feel real. They are not scripted. They are not formal. There is no hierarchy. You are speaking to someone who understands your reality. 

In those spaces, young people ask the questions they are often afraid to ask anywhere else. They ask questions that they think they are unable to ask in a classroom or a clinic. I have learnt that in everyday spaces, under a tree, at a bus stop, in a WhatsApp group - that is where the real conversations happen. 

What peer conversations can change 

I remember one conversation that stayed with me. A young woman attended one of our community dialogues. She was quiet the whole time. After the session, she came to speak to me privately. She told me she had been living with HIV for three years. No one knew. Not her family. Not her partner. 

We talked about treatment. We talked about U=U. We talked about disclosure. Over time, she joined our support group. Later, she stood up and shared her story openly. She had started treatment. She had disclosed her status to her family. She was now supporting other young people. 

That moment stayed with me. It showed me what can happen when someone moves from fear to understanding. 

Many young people are still afraid. One of the biggest fears I hear is about relationships. 

“Can I still be loved?” 
“Can I get married?” 
“Can I have children without passing on HIV?” 

There is also fear from those who are HIV-negative. Fear of being associated with someone living with HIV. Fear shaped by myths and stigma. These fears affect confidence. They affect choices. 

At the same time, stigma still shows up. Stigma is still very real. It affects how people see themselves. It affects how they take their medication. It affects whether they go for testing. Some young people would rather not know their status at all. Stigma affects both prevention and treatment. That is why conversations matter. 

Meeting young people where they are 

To reach young people, we have had to be creative. We do not only rely on formal spaces. We go into communities. We use poetry, drama and street theatre. We go to bus terminals and shopping areas. We start conversations where young people already are. 

We also use WhatsApp groups to share information and stay connected. Sometimes we work with traditional leaders to reach young people in rural areas. These are the spaces where young people feel more comfortable to engage. 

Youth leadership is there — but not always recognized. Young people are already doing the work. We are volunteering. We are running community programmes. We are creating new ways to share information. 

But often, we are not given real decision-making power. Sometimes we are invited into spaces just to speak, but not to lead. That is not enough. Young people need to be trusted. Supported. Funded. We have ideas. We have solutions. But we need the space to implement them. 

What needs to change 

For me, two things need to change. 

First, young people need to speak with one voice. We need to be organised and clear about what we are asking for. 

Second, there needs to be real investment in youth-led work. Not just participation, but leadership. 

If I would leave young people with a message today, it would be, “if you feel afraid to talk about HIV, that feeling is real. The fear. The silence. The stigma. But you are not alone. There are other young people who have walked this path and are still standing. You do not have to figure it out by yourself. There are spaces where you will not be judged. Conversations that will support you. There is more to your life than stigma. There is another vision. A healthy, full life.” 

Looking ahead 

When young people lead HIV conversations, we are not just sharing information. We are reclaiming the silence that was used against us. We are reminding each other that we are not alone. And we are building the world we need — together. 

This reflection is part of our #SafeLoveSafeLives campaign. Watch the full conversation and hear more voices from young people shaping HIV discussions via this YouTube link https://youtu.be/PzgqFEOIpQg