First-hand: living with HIV – from acceptance to advocacy

Recently recognised as one of Africa's 100 most impactful changemakers, Doreen is a young woman living with HIV advocating for social change and end to stigma. Here she shares her personal journey and advice. 

Embracing my story

I've been living with HIV since birth, born to what's known as a discordant couple, where my dad didn't have HIV but my mum did. I was told about my status when I was 13, but my parents knew about it when I was diagnosed aged eight. Back then, there wasn't much in terms of treatment or support. It was just about living day by day, hoping for access to better care. 

I wanted others to know that they’re not alone

I started publicly living with HIV when I was 23 because there were no young voices I knew at the time that were talking about HIV. I realised there was a gap in the conversation about HIV, especially for young adults like myself who were born with the virus. There were no voices representing us, so I decided to step up and share my story publicly. I wanted others to know that they weren't alone, that there were people like me living with HIV.  

I began by sharing my story through interviews and social media. The response was overwhelming, with many unaware of my HIV status at first. But instead of hiding, I turned it into an opportunity to educate and advocate. I founded "I'm a Beautiful Story," a digital initiative aimed at promoting literacy, education, and awareness about HIV. It's about making HIV everyone's business, because until we bring everybody on board and everybody understands that they have a role to play we will keep leaving people behind. 

Education is our most potent weapon

Through "I'm a Beautiful Story," I've worked on various projects, including literacy programmes and partnerships with organizations like AVAC and the International AIDS Society. Education is key to dispelling myths and challenging stigma, especially among young people.  

Stigma remains a significant challenge when it comes to ending HIV. Every person I’ve met who has one stigmatising thought or another, that stigma usually stems from misinformation. Education is our most potent weapon. We must continue to educate, to normalize the conversation around HIV, to challenge and change people’s mindsets. This doesn’t happen overnight but that doesn't mean that we’ll stop educating.

Accepting yourself is key

To those struggling with stigma or with their HIV status, I offer this advice: there is life beyond HIV, but you must first accept yourself. Acceptance is not a one-time event, it’s a process. It’s a daily choice. You don’t wake up one day and think, ‘Oh, I've accepted my HIV status.’ It doesn't work like that. You wake up every day and you choose yourself. You choose to take your ARVs and you choose to live one extra day beyond your HIV diagnosis.  

Remember, there is a life beyond your diagnosis. I've lived with HIV for 31 years, so I know this for a fact. 

Doreen is part of HIV in View, a campaign with ViiV Healthcare to address outdated views of HIV.