“It’s all I’ve ever known”

Published 26, Nov, 2015
Author // Bob Leahy - Publisher

Bob Leahy interviews Ontario’s Muluba Habanyama, a twenty-two year old born with HIV who lived with a family secret for twenty-one years to emerge as one of our busiest and most promising young activists

“It’s all I’ve ever known”

Bob Leahy: Good to talk to you, Muluba. You are twenty-two, HIV-positive and you are studying journalism at Sheridan College. How do people there process that? 

Muluba Habanyama: Well, it’s all I’ve ever known. I just disclosed almost a year ago, last World AIDS Day, so they have actually been really supportive, really inspired by my story.

You have had a fascinating journey. You’re fairly public now. But let’s start with how did that decision to disclose happen?

Probably about five people in my life new prior to then – doctors, my older sister, perhaps someone my mum had told. I hadn’t personally disclosed to anybody. So I hosted a little World AIDS Day event for the Peel HIV/AIDS Network last year and I felt inspired by everything going on and I just disclosed to the room. They understood it was private but a few days later I started to feel no shame and wanted to get my story out there, didn’t want to hide it, and so I made a YouTube video. (see below)

It’s amazing. I’m proud of you. Do you want to tell me your story? You were born with HIV. Where?

I was born in London, England.

Me too. But you were born to HIV-positive parents. From another country?

Yes, they were form Zambia, but I believe they contracted it in England. My dad was unfaithful in his marriage, especially after they moved from Africa and it wasn’t until my mum, myself and my sister left England, left my dad and came to Canada and Ottawa that we realized that three of our family were positive. I was starting to get sick when I was two. The doctors tried everything else and their last straw was to test each of us. They ended up calling my mum and saying “you’re positive but your two daughters are negative.” And then they ended up calling her back and saying “there was an error, you and your youngest daughter are positive”. So she ended up calling my dad in England. He got tested and he was positive as well.

So three of you were positive. Are your parents still alive?

No, my dad passed away in 2008 from HIV-related causes and my mum in 2012.

So you were left with just an older sister, who was negative. Who looked after you?

Pretty much my sister

But you had grown up HIV-positive. How did you become aware of that?

To be honest, at first I could see that something was different. I was talking medication and it was still kind of a secret. My mum started to bring in talk of HIV and explained to me what it was, that some families have secrets and this was a secret with us, you don’t tell people this. We were very, very scared of the stigma.

You didn't talk about it to anyone about it until last year. Growing up in Canada, did you enjoy good health?

I actually did. I did pretty well with taking the meds, but I’ve always had difficulty with medication even up to this day. The only time I got sick was after my mum died I kind of went into a deep depression and isolated myself from the world and I stopped engaging, going to doctors’ appointments, got very sick and ended up in the hospital. That was a huge wake-up call; I had to get back on the train and do a lot of physical and emotional rehab.  But I take too many pills. I want my one needle.

That’s coming, Muluba.

I’ll be there (laughs). That would be incredible.

For you maybe. Me, I don’t like needles. (laughs) But anyway, your viral load is undetectable?


What is the biggest challenge that HIV presents for you then as a 22-year old at school now? Or have you so integrated it in to your life that it’s no big deal?

Both, in a way. I do a lot of advocacy so it’s definitely a part of me. And there are some issues that I face sometimes if I’m just not feeling well . . .

We talk a lot about HIV stigma. Do you ever run up against it? Has it impacted your life?

Oh yes, absolutely. Back when I was a kid, I had a Big Sister in the Big Brother/Big Sister program that would make me eat off paper plates, use paper cups, while her and her husband would be eating off china. So that relationship didn’t last long. And even recently, making the YouTube video, for every 100 supporters there are maybe two or three negative commenters. It’s very easy for people to hide behind the internet. Just recently I was in the Toronto Star and a massage therapist recognized me and basically rejected me and that hurt a lot.

That's not good. Now you’re 22 and the dating scene for HIV-positive men and women can be tricky.

Well I did a little bit of dating before I disclosed, but then there was always something holding me back because there was something I didn’t want to talk about. But now I’m definitely more open to it and I’ve entered the dating scene. In most cases, they already know because I’ve put it out there everywhere but sometimes it can be an awkward situation, sometimes not. But I’m still learning the game.

OK, leaping right into the present, we have had a big story recently about Charlie Sheen disclosing he is HIV-positive. I’m curious how people in your circle of young people processed that.

I’m hearing a lot more positive feedback, probably about 75% but there is still some of the “I’m not surprised” reaction. But I do think that for the most part people do feel compassion for him and trying to learn from and understand it, so that’s been great to see. I think overall it’s a good thing he has come out.

Now getting back to your own work, you have been doing advocacy yourself. I know you are a member of CPPN, the new positive people’s network in Canada.

Yes, I have kind of hit the ground running. I got to write for MTV back in April and I was in the Toronto Star. I was honorary chair for the Peel AIDS Walk for Life and was on CTV for that. I work with Women’s Health in Women’s Hands with a youth group. I’m working on The HIV Disclosure project with Gail and Wayne Bristow and I’m the national youth ambassador for CANFAR.

Impressive! Where do you see this going?  Would you like to be a prominent voice in the HIV community, like in a leadership role?

It’s kind of something that has just happened. I mean I really still love journalism.

We should talk to you about writing about PositiveLite.com (laughs). Muluba. I can't thank you enough for talking to PositiveLite.com. I'm impressed with everything about you. Good luck with your work.

You can follow Muluba on Facebook here and on LinkedIn here. On twitter Muluba is @mulubahabanyama. 

About the Author

Bob Leahy - Publisher

Bob Leahy - Publisher

Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com founder Brian Finch. He joined PositiveLite.com at its inception in 2009 and became it's Editor a year later.

Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year.  He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network (OHTN) and the Canadian AIDS Society (CAS).  He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005.  Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for TheBody.com.

In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.

Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest  in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty-two years and three dogs.