Ending HIV-related stigma in Canada – Macleans.ca

You’re a woman. You are black. And you are HIV positive. This world was not built for you. “These are the brutally honest words her mother offered Muluba Habanyama, who was struggling to find her place at her Oakville high school. Today, Muluba is 28 years old and already a seasoned activist.

Muluba was born in Middlesex, England, to Zambian parents. It took her family two years and a serious illness to discover that she was HIV positive, and the prospects for a young girl with HIV in the 1990s were bleak. But, as Muluba grew, the HIV treatment landscape grew with her, and the condition slowly but surely transformed from a death sentence to a manageable chronic illness.

“When I was a teenager, the doctors told me that I was going to be able to live a long, healthy and satisfying life,” says Muluba. “I clearly remember, when I was 15 or 16 years old, my pediatric HIV specialist told me, ‘Keep taking the medications and one day I will meet your babies.’ I hadn’t realized how much I needed to hear that. It was the first time anyone had talked to me about my future in a way that included my own family. “

For many health conditions, that would have been the end: a triumph of medical innovation and Muluba managing to live a long and happy life. But for people living with HIV, navigating the medical side of the disease is only half the battle. “While the medical improvements have been fantastic, I think there is still a need for societal improvement in the way people living with HIV are treated,” says Sean Hosein of CATIE, the source for information on HIV and AIDS. hepatitis C in Canada. “We need to get rid of the stigma and discrimination they face.”

“I felt out of this world, like an alien”

For Muluba, who grew up in Ontario as an immigrant woman of color, the social landscape was already a war zone. “From the day I arrived in Canada, I was intimidated,” she recalls. “Children would make fun of my accent. They made fun of the rice and beans my mom made me for lunch. In elementary school, I was the only black kid in my grade for three years. Then in my fourth year, there was a black kid in the other class. “

Now add HIV, a lifelong secret that Muluba knew could make things worse if it ever came out. “He couldn’t tell anyone because then they would tell their parents and they would tell everyone else,” he says. “It was this deep, dark secret. I would go to sleepovers and be scared to take my medicine in case a parent recognized the pill. And then when I got to high school, they asked me out and I didn’t know what to do. “

“How can I trust a 15-year-old to know my status?”

Even in adulthood, the social realm, and especially the romantic realm, is strained for Muluba. She never knows what that reveal moment is going to be like, and even in the best of cases it can be exhausting. “Not only are you opening up to this person and you are vulnerable, but you also feel like you have to be a teacher and an educator in that moment,” says Muluba. “I have had people whose faces have faded almost immediately. But I’ve also met men who just didn’t know much about HIV, were very confused, and were willing to learn more, which is good. I don’t want to give you a complete lesson plan on HIV. I would like you to be a grown man and do the research yourself. “

Fortunately, when people are willing to do that research, a lot of good news can be found. They will not only learn how manageable the disease is now, but they will also find the concept of U = U. It is a well-established scientific reality that a viral load that becomes undetectable (U) by treatment becomes untransmittable (U) to partners. sexual. “Simply put,” says Hosein, “an HIV-positive person who receives effective treatment will not transmit the virus sexually.”

Perhaps most importantly, many studies have shown that people with HIV who receive rapid diagnosis and effective treatment can expect to live as long as their HIV-negative peers. But this information is not general knowledge. Much has changed for people living with HIV in the last decade and, as an activist, Muluba educates others through her blog, podcast, and a full-time job in communications. Her mother warned her that the world was not made for her, but she also said something else: “You are going to make this your world.”

“HIV is something I have, but it doesn’t define me”

A total change in the social understanding of HIV is a big undertaking, to put it mildly, and it is not the only thing Muluba has on its plate. She has a close group of friends who support her. She is working on an autobiography. He wants to write a children’s book and has travel plans that he will realize one day when the borders reopen. She also has nieces and nephews that she needs to adore. It is not right or reasonable to ask her and other people living with HIV to overcome misconceptions and stigma on their own.

“I talk to people, especially my fellow activists, and they say, ‘Let’s do this. Let’s break the stigma, ‘”says Muluba. “But at the same time, that is not our job. There was a time a few years ago when I was exhausted, overworked, and in a bad, toxic relationship, and I felt like everyone was calling me a strong black woman. At a certain point, that no longer sounds like a compliment. It’s like people saying, ‘You’re strong, so you can handle all of this. We’re just going to put more on you. ‘ Sometimes I need a moment not to be strong, not to be brave. We all do. “

By collectively educating ourselves and eradicating outdated misconceptions about HIV, we can all help give Muluba and the tens of thousands of Canadians living with HIV that much-deserved moment.

CATIE is Canada’s source for information on HIV and Hepatitis C, and has articles, videos, brochures, and online courses to help you learn more about HIV prevention and treatment. If you are concerned about how HIV might affect you, find a health care or social service provider at www.HIV411.ca. And if you are HIV positive and want more information about U = U and effective treatment options, ask your doctor.

You can keep up to date with Muluba on Instagram / Twitter at @itsmuluba.

Sponsored by a member of Innovative Medicines Canada.