All Too Real

Two young New Yorkers deal with the diagnosis


When Danielle was diagnosed HIV-positive in 1989, doctors gave her three years to live. Sean found out he was HIV-positive last year, and worried at first that he wouldn’t live to see his next birthday.

But Danielle, now 22, and Sean, 21, are both alive and well, and getting support from Health and Education Alternatives for Teens (HEAT), a community-based program run by SUNY Downstate Medical Center in Brooklyn. The program provides medical and mental health services and case management to youth ages 13-24 who are living with or at high risk for HIV/AIDS.


We talked to them about what it means to live as a young person with the virus today, and what all teens should know about HIV.


NYC: When did you first discover that you were HIV-positive? What helped you through?

Sean: I discovered I was HIV-positive on March 8, 2008. I was crying, depressed. I didn’t go out with friends, because I was scared that I would just walk out the door and drop dead.

My mother died of cancer, and she was living with it for about 18 years. I think the fact that she was fighting just to see her kids grow up reminded me that even though I have HIV, I can’t let it beat me. My goal is to live to my 90th birthday. So you could say my mother was my strength.

Danielle: My family found out when I was 3 years old.* I was about 7 or 8 when my guardian started seeing me get upset. I said, “Why am I the only one in my class who has to take medicine every day?” She finally sat me down and explained to me that I’m going to be sick, and I could get worse if I don’t keep taking my medicine.

* About 80% of HEAT program participants got HIV through sexual activity, unlike Danielle.

At about 17, I finally understood what HIV was and what it was doing to me. For a while I closed myself off to a lot of people. But I had friends my age who were dealing with the same thing I was dealing with, and that helped pull me through.

NYC: How have people reacted when you’ve told them you’re HIV-positive?

Danielle: For years, I never told anybody. In May 2007, they were having a health fair at my church, and they invited a group of my friends from the clinic to come tell their stories. I went up to the podium and words started coming out. After that, I really didn’t care. By this time I was 20 and I said, “I’m too old to be holding secrets.”

Everybody was cool with it because we were already family. Later I wrote this long email to my high school Yahoo! groups, explaining everything. When I clicked “send,” I was very nervous.

I got a flood of emails, like, “Oh, my God, you’re my she-ro,” and, “I can’t believe you’re so strong…” I loved the support. But honestly, if I’d told them while I was in high school, I don’t think it would have been the same.

NYC: How did you contract HIV?

Sean: I was messing with a guy for about a year and a half, and he was married, older. I always used a condom. And this particular night, I was a little drunk, and as I’m having sex with him, I’m realizing that he’s not wearing a condom. The back of my mind was telling him to stop, but the words weren’t coming out. I told myself, “He’s the only guy I’ve been messing with for the past year, so if I had something, by now I guess it would have shown up.”

Within about five months, I noticed I felt more tired. I got tested, and I was negative. I kept on sleeping with him, and then I stopped, because he was getting on my nerves. Then I went to Job Corps, and they required HIV testing. They told me I was actually positive.

Through it all, I blame myself. I keep picturing when we were doing it: the condom was right there in front of my face, to the left hand side. Something in my heart was telling me to stop him, but I was just so caught up in the moment.

Danielle: I got it from my mom; she got it from her husband. When my diagnosis came, they told my family that 6 years old was the oldest that I would live to be, and my mom had six more months to live.

With my mom, they actually were right on the money. So I didn’t have a chance to go back and ask questions about how or why. My father died a year after my mom, and I didn’t know him regardless. So I’m the lone ranger in my family as far as having HIV, with no one to relate to, no one to ask questions.

NYC: Do teens know enough about protecting themselves?

Sean: Kids are starting to have sex at 13, and I was one of them. When you’re 13, HIV doesn’t cross your mind. As you get older, in high school, you think, “OK, he may have HIV—but I highly doubt it, ’cause he’s on the basketball team; he looks real good.” And you go out there and you take that chance without using a condom.

Danielle: I’ve seen the curriculum in this state and it’s mandated; kids are supposed to learn about HIV. Here’s the problem: you can teach through textbooks all you want to, but it’s not real to them so it doesn’t sink in. That’s why I don’t have a problem telling my status to young people, because that’s the only way they’re actually going to learn. I tell my story and they see a young face who has it, they start paying attention.

NYC: How has HIV impacted your life, including your dating life?

Sean: I’ve gone on dates. I told one guy I was messing with that I was HIV-positive, and I spit that out because I was drunk. I was like, “Look, before you get any ideas, I’m HIV-positive.” He said, “Oh, that’s cool with me.” I put a condom on him and just performed oral sex. I wasn’t going that far because I was scared the condom might pop and I might be too drunk to notice it.

Honestly, I’m more nervous about what they can give me, because I don’t think my body can handle anything else. I’m not trying to catch no STD, or another strain of HIV.

Danielle: I don’t even remember that I’m HIV-positive most of the time. Taking my medicine during the day is the only time I remember. Or I might get sick one day and I’m like, “Oh my gosh, I hope it’s not because of this.”

I’ll see somebody at the club and if I see that they like me and I like them, I’ll be like, “Hi, my name is so-and-so. I have HIV.” Straight up, right after my name. Then I leave it up to them, because I’ve done my job.

NYC: What would you tell teens who are not HIV-positive?

Danielle: I would tell teens, I’m living with this 22 years. I’m 22. And I’m expecting that I will never see a cure.

There is absolutely no escape after getting HIV. Whatever you can do—use a condom, a dental dam, whatever they’ve got out there. Saran wrap it, I don’t care what you’ve gotta do, use some type of protection.

Source: Youth Communication