For years, Muluba Habanyama hid within her own skin. Born with HIV-AIDS, she spent much of her childhood fearing what people would say if they found out. She remembers being asked to eat off a paper plate instead of sharing dishes with one family who knew her secret, and she watched her mom, also HIV positive, suffer in her own relationships because of the stigma that came with the disease.
“We lived in such fear in our household. That drained us,” the now 23-year-old recalls. “If we had disclosed, we would have found supports.”
On Worlds AIDS Day in 2014, Habanyama was hosting an event for the Peel HIV network in Mississauga when she finally found the courage to share her diagnosis. As she introduced speakers to a small audience of 30 health providers and people who work with those who are HIV-positive, she was inspired by how accepting the crowd was. At the end of the event, she decided to stand and share her own journey as an HIV positive woman. She could’ve stopped there, her secret safe within those walls. Instead, she made a video describing her illness and posted it on YouTube. It was the beginning of her journey into health-care advocacy. By then, she was a journalism student at Sheridan, and she credits her time in the program, in part, with giving her the strength she needed to share her story.
“I realized after my first semester at Sheridan that I was asking other people to tell me their stories, and I wanted to share my own. I got this newfound confidence. I think journalism really taught me about honesty. I found myself in that program.”
Today, she embraces her story in all her work. As a board member on the Ontario HIV treatment network, and a national youth ambassador for the Canadian Foundation for AIDS Research (CANFAR), she brings the face of what it means to live with HIV-AIDS to the world and often speaks to the media and hosts fundraising events. On World AIDS Day in 2016 she was an ambassador for CANFAR’s 20th Bloor Street Entertains fundraiser and she penned an article for the Huffington Post Canada. It’s been two years since her YouTube video, and she has no regrets.
“I always thought my story was a hinder to me, but in a way it’s kind of pushed me forward,” she says. “This is what makes me different.”
Much of her work now has her sharing her story with journalists, rather than reporting on it. She says having a media background helps her put a human touch on life-saving science and research. “You can get the facts out there, and get the science out there, but it’s the story behind it that has more power.”
“Ending the stigma is how you end the disease. We’ve come such a long way, but we have so much more to do.”
Habanyama also brings her first-hand knowledge of the illness to her volunteer work. She sits on the board of Teresa Group, an organization that supports families living with HIV/AIDS, and she is the lone Canadian representative for Youth Tech Health, a San Francisco-based group that examines how technology can help young people manage illness. Habanyama says her work allows her to stay up-to-date on the latest research. Once considered a death sentence, many people with HIV-AIDS can now manage the illness with medication and live full lives. That, along with the importance of prevention, are messages she wants to share with the world so no one lives in silence the same way she did.
“Ending the stigma is how you end the disease,” she says. “We’ve come such a long way, but we have so much more to do.”