World AIDS Day: Toronto woman hid HIV from kids for 7 years

Almost every parent has kept a secret from their kids at one time or another, whether it's that they don't really have eyes at the back of their heads or that not eating vegetables won't make actually make you stop growing.

But what's it like to hide an HIV infection from your children? Toronto resident Marisol Desbiens, 38, knows. When Desbienslearned she was HIV-positive in 2004, her daughters were just three and four years old. Shocked, depressed and afraid, she hid the illness from her girls for seven years.

Approximately 71,300 Canadians live with HIV, according to the latest numbers from the Public Health Agency of Canada. A quarter of those didn't know they had the infection because of a lack of testing or diagnosis.

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But today on World AIDS Day, people across the country are coming together to change that by remembering those who have died of HIV-AIDS and speaking out about how it continues to affect Canadians.

Desbiensonly learned that she was HIV-positive after she went to donate blood. Shetoldher husband, who laterlearned thathehad contracted the virus, as well.

That day, Desbiens had a new secret to keep from her children, struggling for years to find the words to tell them. On World AIDS Day, she shared her story with Ontario Today's Rita Celli.

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This interview has been edited for length and clarity.

What was it like keeping HIV hidden from your kids?

"That was a great torture. I was worried all the time, scared that they might find out. It's not something that anyone should go through. I mean it would be great to be able to disclose and have peace. But when it comes to this disease, it's very difficult - especially when you experience stigma from other people that are supposed to be educated or should know better. I think that having those negative experiences just intensified the internalized stigma."

What made you decide that it was time to tell your girls?

"Well, my husband was in a coma in the hospital and the girls were there and all his family was there about 30 people. Everybody knew except my daughters and the social worker became very concerned. They didn't know anything about this disease and there was dad in this ICU.

The social worker told me, 'You need to tell them. If you don't, they're going to find out from somewhere else and that could be very devastating You need to think about that.'"

How did you do it?

"It wasn't an easy decision to take. I knew as a mom myself, I'm scared, I'm full of anxiety, I'm about to disclose to my kids. And I'm not a social worker that I could talk to them at their level for them to understand without crying or being shocked.

I told them that mommy is sick and, 'Remember those vitamins that I used to take? Well those are medications. As long as I take those medications, I'm going to be alright. But if I don't take them, I could become very, very sick.'

To my surprise they told me, 'Mom we know that something is wrong, but we didn't know what it was. But we knew that something is going on with you.'

And I'm thinking, "I'm protecting you, you don't know anything." But they're very smart and they knew. When I said it they cried, but at the same time they were really grateful that I was able to tell them."

How did it feel to look at your daughters and actually say those words?

"I really wanted to cry but I kind of repressed it. I just tried to be strong for them because I don't want them to see me crying and give them the idea that this is the end. There is hope.

I said that it's just a different lifestyle where I have to take care of myself and things will be allright. I don't want to make them feel like this is set, that I am HIV positive and I'm going to die.

"You don't understand the freedom from being worried and being anxious all the time. All the time. Now I feel a relief, they know, I can breathe; I'm not worried about that. It's so liberating that I don't have to hide it anymore."

Charlie Sheen recently came forward about his battle with HIV. How did it feel to hear that?

"I was shocked that he actually came and said, 'I'm HIV positive.'He was being, I think, blackmailed by somebody so he came and spoke about the issue. But at the same time that all these negative things are coming to him in terms of criticism and gossip, it also opened the opportunity to talk more about HIV.

HIV nowadays is being seen as a chronic illness, no different than diabetes. But it still has this big stigma attached that is not like if a person has cancer, most people will be very compassionate, they will be there and be supportive. What makes it so different from HIV? But I believe that with him disclosing, it opened this opportunity to talk more about it and not to see HIV so negatively as it has been [seen]."