By Marie-Claude Simard
With four young children and a full-time job at a hospital, 35-year-old Marceline (not her real name) is always on the go. A life full of plans unfolds before her and her family. Like most parents, her children’s well-being comes first. Her difference? She lives with HIV, discreetly.
Hélène (not her real name), a mother of three, is finishing her management studies at the University of Montreal this year. At only 32, her life is an example of resilience and fighting spirit. Since arriving clandestinely in Quebec 10 years ago, this Congolese woman has integrated well into her adopted society and actively advocates for various social causes. Only her partner and her mother know that she is living with HIV.
Every morning, Michèle (not her real name), originally from Haiti, watches with emotion as her lawyer daughter grabs her briefcase before leaving the house. So many sacrifices have been made since their arrival in Montreal 20 years ago to give her daughter a better life. “I did it!” the woman in her fifties tells herself, satisfied. But a secret gnaws at her heart: she is living with HIV.
Today in Canada, having HIV is no longer a death sentence it was in the 1980s. Thanks to early diagnosis and antiretroviral treatments, people living with HIV can now avoid AIDS and live long, healthy lives. Furthermore, by adhering to treatment, they can avoid transmitting the virus to their sexual partner or their baby during pregnancy and childbirth.
Painful Stigma
Despite these great medical advances, taboos persist, and people living with HIV continue to suffer. “These days, generally speaking, it’s not the virus itself that most affects people living with HIV, but everything surrounding it: the stigma, discrimination, and prejudice,” explains Chris Lau, Executive Director of Maison Plein Cœur.
“Of course, there are exceptions,” adds Mr. Lau. “Some people have difficulty with the medication; the side effects can be challenging. But, generally speaking, it’s the experience of living with HIV that affects them more than the virus itself.”
Since 1991, his organization has been supporting and assisting people living with HIV in Montreal. Even today, many people hide their HIV status for fear of rejection, losing their jobs, or not receiving proper treatment in general. “We address all aspects of the person (except medical care), whether it’s the social, emotional, or practical side,” adds Mr. Lau.
Maison Plein Cœur also offers at-home support. This brings them into contact with even more marginalized HIV-positive individuals. The vast majority of them are pregnant women or mothers from countries where the virus is endemic. Many of the approximately 60 Montreal mothers benefiting from this service don’t dare go to the organization’s offices for fear of being identified. Furthermore, they worry about how others will perceive their children.
“The mothers are afraid that if they reveal their status, their children will be discriminated against, even though they themselves are HIV-negative. They fear the judgment of teachers, social workers, everyone,” explains Roseleine Delva, a family and social worker at Maison Plein Cœur for 16 years. “They also fear that people will judge them and think they’ve had a bad life or that they’ve been involved in prostitution. It’s very difficult psychologically.”
In addition, these mothers often face multiple challenges. For example, many arrived in Canada as refugees, sometimes undocumented. They need to regularize their status to access the healthcare system, employment, education, and so on.
“All our women are on treatment. They are all undetectable. We help them take their medication. We have a few children who are HIV-positive. They came to Quebec with HIV,” Roseleine points out. She, among other things, supports them with their household chores. She also makes sure they have what they need to take care of themselves and their children. She accompanies them to their appointments, advises them, and, above all, listens attentively.
Extraordinary Resilience
Marcelline, Hélène, and Michèle all benefited from her help and remain very close to her, even though today they are independent, resourceful mothers. “When I met Roseleine, I was at my lowest point,” Hélène explains. “I had just arrived in the country, I had just learned I was HIV-positive, and I was pregnant. Roseleine became my anchor. I called her for absolutely everything!”
Ten years ago, Hélène fled the Democratic Republic of Congo to escape a forced marriage. With the help of her mother and a smuggler, she obtained a plane ticket to Canada and a visitor’s visa. She arrived in Montreal at 22, alone, with $200 in her pocket.
After beginning the asylum process, she had to undergo medical tests. That’s when she learned she was HIV-positive. The only man she had ever loved transmitted the virus to her, she says. He eventually died from the infection in Africa.
“The hardest part is accepting the diagnosis,” says Hélène, who received the news while staying at the YMCA. Isolated, destitute, and angry, she endured a month of anguish. Finally, she decided to take antiretroviral medication and move on. Some time later, she became pregnant, unplanned. The father — her current partner — told her he would support her. She was expecting triplets!
HIV-positive mothers who maintain an undetectable viral load will not transmit the virus to their offspring, either during pregnancy or childbirth. However, they should not breastfeed, as the risk, although very low, is not zero.
Today, Hélène is involved with the Canadian AIDS Society and, increasingly, with marginalized people. The young mother hopes to open a shelter for women victims of violence in the Montérégie region soon. According to her, living with HIV has had positive effects on her life. “Sometimes I tell my doctor: I think HIV saved me! I pay more attention to many aspects of my health, but I don’t suffer from anything! I intend to see my children have children. I’m careful about everything!”
Secrecy
Some HIV-positive mothers isolate themselves, fearing that their condition will be made known to those around them. Like Michèle, who has sunk into depression. The Haitian woman immigrated to Canada with her young daughter more than 20 years ago. It was while undergoing testing for life insurance that she learned she had HIV.
“I fainted in the doctor’s office,” she says. Deeply religious, she felt as if the sky had just fallen on her head. At least her daughter didn’t have the virus. Her health was good, and she was under the care of a good doctor. But her distress didn’t subside. Her partner, a controlling man, discouraged her from seeking psychological help. She saw only one possible way out: death, by suicide. But not right away. As soon as her daughter turned 18. “I bought my coffin, I paid for all the funeral arrangements,” she explains.
The light appeared at the end of the tunnel when she left her partner a few years after receiving her diagnosis. She consulted a psychologist and used the home support services of Maison Plein Cœur. “Roseleine introduced me to a young woman who, like me, was living with HIV and raising children. It was so good to see that there were other people like me, and that they were doing well!”
A little later, Michèle formed a close friendship with a man. She dared to reveal her secret to him. He strongly encouraged her to regain hope and pursue her dreams. “Finally, I sold my coffin and bought myself a duplex!” the woman in her fifties says with a laugh.
The caregiver now owns two homes and has a bright retirement plan. She remains very discreet about her HIV-positive status. However, she knows that the support of others and friendship are key to living well with HIV.
Alone on the Street
Maison Plein Cœur also offers supervised transitional housing. These apartments, located above its Montreal offices, are intended for HIV-positive individuals experiencing hardship and seeking stability.
Marcelline was one of them. Originally from Congo, she arrived in Canada as a refugee in 2007, at the age of 21. A few years later, she became pregnant. It was at that time that she learned she had HIV.
Her boyfriend took off as soon as he found out she was pregnant. Completely isolated in Montreal, she didn’t even know where to live. With Roseleine’s help, she moved into a Maison Plein Cœur apartment for a few months. She got back on her feet. She started treatment and gave birth to a healthy baby girl.
In 2013, she became pregnant again. She asked the doctor to inform the baby’s father of her HIV status. Since her viral load is undetectable, there was no possibility of transmission. But the man still flew into a rage.
“He threatened to kill me; he was furious,” she explains. Expelled from the hospital, the man vented his anger on social media. Overnight, her life became a disaster: her friends and family rejected her outright. Even her best friend, a nurse! According to the Supreme Court of Canada, a person only needs to disclose their HIV status to their sexual partner when there is a “realistic possibility” of transmission.
After all these storms, Marcelline now “doesn’t give a damn” what people say behind her back: she’s not ashamed of anything. A mother of four, in a relationship with the father of her two youngest children, and a patient attendant at Sainte-Justine Hospital, the 35-year-old loves her life. She only thinks about HIV when she takes her daily pill.
“The important thing is to accept it and love yourself,” she says. “You shouldn’t think that HIV will stop you from doing what you want. I would even say that HIV pushes me to go further, for my children, for myself. I’m a fighter, I don’t stop, even when I’m told no, I keep going. I move forward, I look ahead, without letting myself be distracted by others. That’s the key.”
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