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Talking With Your Children About HIV: Personal Perspectives


This is an excerpt from There is Hope: Learning to Live with HIV, 2nd Edition, written by Janice Ferri, with Richard R. Roose and Jill Schwendeman, a publication of The HIV Coalition.

I think a good time to tell my son about my HIV would be when I got sick and knew I only had a few years left. He's 9, he couldn't handle it now. He's the type of kid that during the Iraqi War, he was just waiting for Iraq to bomb us. So when he worries about something, he worries and worries and worries and worries and worries. He already worries about me, he's always asking how I'm feeling. Maybe that's because his father already died. And we're real close. I think telling him would affect his schoolwork. I don't think I'd want to tell him alone, either.

-- "Marie"

Telling my 8-year-old boy I was HIV-positive was pretty simple, because we already knew a lot of people who had AIDS. My best friend had died of it. Also, he pays attention, even when you think he's not, so he knows stuff. He's negative, thank God. It took me awhile to get him tested, because I knew it was possible he might be infected, and I was afraid. That had to be the hardest thing I've ever done. I never told him what I was having him tested for.

-- Wendy

Sometimes parents don't want to tell their kids that they, the children, are infected. We have to follow the parents' wishes and not disclose to the kids if they don't want us to. Still, kids wonder why they're coming to the clinic all the time, and seeing people get sick. They can't go to camps or special outings for HIV-affected families because the parents are afraid they'll find out. They miss out on a lot if the parents won't let them know or talk about it.

-- Annie Martin, Clinical Nurse Specialist, Cook County Women and Children's HIV Program

My son's only 3. He knows he gets infusions and medications, but I don't think he's old enough to know what all that means. I'm sure he's not old enough to use discretion. I don't want him walking down the street saying, "Look, I'm HIV."

I'm not sure when I'll tell him he's infected. It just depends on when I think he'll understand. Or maybe it'll be when he really bleeds for the first time. Maybe I'll say, "See how you're bleeding here? Don't let anyone touch you except Mommy or Daddy, or someone with gloves."

-- Christine

Don't rush into telling a lot of people. You need to find someone you trust who will have your best interests in mind. Think about the people in your life. Who can provide care and affection? Who has been there for you in the past? It should be someone you feel comfortable being with and talking to. You don't want to exclude your friends, but think about how they treat you. Do they call you names or treat you badly in any way? Then they are not someone you'll want to tell.

-- Felicia Rodriguez, Director of Adolescent Education, Cook County Hospital, Women and Children's AIDS Project

Adults probably understand more than teens do. For teens, it's harder to learn about stuff. That's one reason I haven't told nobody about my HIV. My mom has told some of the family, but that's about it. She told me it's important to keep it quiet.

-- "Al" (age 13)

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This article was provided by HIV Coalition (HIVCO).
See Also's Just Diagnosed Resource Center
Telling Others You're HIV Positive
More Advice on Telling Others You Have HIV/AIDS