Campus

The slow killer: living with HIV on campus

Muluba Habanyama kept a lifelong secret from everyone she’s ever met -- she’s HIV positive. As a child, her mother told her not to tell a single soul, or it would ruin everything. Muluba quickly learned to distance herself from the world, and live a life of fear and self-hatred.
(Aiken Lao)
Listen to the full episode39:22

[WARNING: CONTAINS MATURE CONTENT]

We all have secrets - things about us that we'd rather not reveal. Sometimes those secrets are so big, we do everything we can to keep a tight grip on them. But over time, those are usually the secrets that start to grab a hold of us, control our lives, and weigh us down. That's what happened with Muluba Habanyama.

The thing about HIV, it's one of those slow killers. So you can be on a high for a while, and then once it finally gets you, it gets you. And it got me… I looked up to the sky on the stretcher, it was like, 'Just take me.'

For most of her life, she harboured something from everyone she'd ever met -- she's HIV positive. It was only after tragedy, and her own close call with death, that she felt she had to finally share this secret with the world.

But getting to that point was a long road. As a child, Muluba's mother told her not to tell a single soul, or it would ruin everything. She quickly learned to distance herself from the world, and live a life of fear and self-hatred.

GROWING UP WITH HIV

Muluba was born in the U.K., shortly after her parents immigrated from Zambia. She had an older sister, and a third child was on the way. But after her father's physical abuse caused her mother to miscarry the third child, her mother took Muluba and her sister, and moved to Ottawa.

She first sat me down and said, 'You know, some families have secrets, and this is our secret...You have a sickness, you have something called HIV. It's a very serious disease. Mommy has this sickness as well. Daddy has the sickness as well. Daddy gave it to you and mommy.'

It was there, while Muluba was only two years old, that she and her mother were diagnosed as HIV positive. As a child, her mother tried to protect her by insisting that she couldn't tell a single soul, or it would ruin everything in her life. "She first sat me down and said, 'You know, some families have secrets, and this is our secret...You have a sickness, you have something called HIV. It's a very serious disease. Mommy has this sickness as well. Daddy has the sickness as well. Daddy gave it to you and mommy,'" Muluba recalls her mom telling her.

Although doctors explained to Muluba how normal her life could be, her childhood was anything but normal. Something as small as a scraped knee on the playground caused her immense anxiety. She would quickly learn to distance herself from everyone at school, and live in isolation.

On top of that, her daily routines were extremely difficult to maintain. And she was on a strict medication schedule - taking 5 pills, twice a day - just to stay healthy. "All you can do is just sleep or lie down. You just have to let your body rest. And it's the most frustrating thing because there's so much I want to do," Muluba said.

Muluba as a baby, before doctors detected the HIV virus in her.

"THE THING ABOUT HIV, IT'S ONE OF THOSE SLOW KILLERS."

Managing her medications, and getting them down became a daily struggle for Muluba. As she got older, the side-effects only got worse. She began to wonder if she would ever live a normal, healthy life.

Then, she was dealt a huge blow when her dad died as a result of HIV. And while Muluba wasn't close with him, his death made her question her own mortality at a really young age. "It just was heartbreaking to kind of realize that this is something that will just be with me for my entire life...and days of just wondering, 'What does this mean for me? There is no cure. What am I doing?'"

There's some things in this world you can't have, because you have a deadly virus in your body, because you're not capable of being loved... I was destined not to find love, or to have a boyfriend, or to have marriage, or to date. It was just not in the cards for me.
She also couldn't imagine finding love, or even being close enough with someone to be able to share her secret. "There's some things in this world you can't have, because you have a deadly virus in your body, because you're not capable of being loved... I was destined not to find love, or to have a boyfriend, or to have marriage, or to date. It was just not in the cards for me," Muluba thought.
After a near-death experience, Muluba remained at the hospital to begin her road to recovery.

Muluba kept those walls up, and never allowed herself to get close to anyone. Living with HIV had robbed her of so many of those moments that we all had in high school. And unfortunately for her, the virus hit hard at home, too. By the end of high school, Muluba's mom lost her battle with HIV. Muluba arrived home that day to see her mom for the final time. "I'm like, 'Really?! You too?! Get up! Don't do this, this can't be real'... And I am just looking at her body, and she looks so peaceful," Muluba remembers.

By then, she had lost all hope. She chose denial, and stopped taking her medication. She started to lose control of her health, and it eventually led to a near-death experience. After blacking out on the bus, and suffering intense pain in her lungs, she was finally forced to call 911. "The thing about HIV, it's one of those slow killers. So you can be on a high for a while, and then once it finally gets you, it gets you. And it got me… I looked up to the sky on the stretcher, it was like, 'Just take me,'" Muluba recalls.

FIGHTING BACK AGAINST THE VIRUS

Muluba survived that horrific episode, but it nearly took her life. She stayed at the hospital for a while, and slowly began her road to recovery. The experience led to the realization that her life was important, and it was absolutely worth living. So at that moment, she made a choice, and decided to finally take control of her destiny. "It reignited that hope in me, and it gave me this strength that I didn't know I had," she said.

I had those silent happy tears, but I felt sorry, and I felt a sense of loss, loss for the many years that I lived in so much fear, that if I had known this love existed, and these people existed, and these resources, then maybe I would have went on that one date, or opened up to that one friend.

When she regained her mental and physical strength, Muluba enrolled in post-secondary school. She also began engaging with the HIV community, attending events and conferences. It gave her a sense of belonging. And just before her first semester ended, she felt compelled to reveal her secret to the world.

"My mind is running. I'm feeling such a wave of emotion. I'm feeling such inspiration and I'm feeling such confidence and… I'm going to explode if I don't get it out," she said, recalling the moment she chose to film her confession and share it through social media.
Muluba is now an advocate, encouraging others to fight against the stigma of HIV/AIDS.

"All 21 years of my life, I felt so ashamed of who I am, disgusted with who I am, and scared of the stigma. There's so much stigma with HIV... And I've not really realized, until this year, that I have a purpose, and I no longer care what people think," she said in the video.

After being pinned down by the weight of that secret for so long, Muluba was finally free. The next morning she woke up to a flood of messages of "nothing but love and support."

"I had those silent happy tears, but I felt sorry, and I felt a sense of loss, loss for the many years that I lived in so much fear, that if I had known this love existed, and these people existed, and these resources, then maybe I would have went on that one date, or opened up to that one friend, or maybe my mom wouldn't have been sick because she wouldn't also be fighting this fear of stigma," Muluba said.

These days, Muluba is driven by a renewed sense of purpose, confidence, and inner strength. She's become an advocate for those living with HIV, and inspires people to fight back against the virus. 

Note: This story was first published in December 2016. At the time, she was frail, and weighed under 100 pounds as a result of her hospitilization. Along the road to her recovery, she regained her physical health, and is now at a healthy weight. 


EXTRA | Health economist Laura Derksen talks about how the fear of stigma may actually be causing an increase in spreading HIV.