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HIV And Children: The Burden Of Silence

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Paper HIV ribbons made by children with HIV are displayed on a bulletin board at Children's National Medical Center in Washington, D.C.
Kavitha Cardoza
Paper HIV ribbons made by children with HIV are displayed on a bulletin board at Children's National Medical Center in Washington, D.C.

Kendra's* childhood was a blur of medical appointments. "Getting blood drawn, having shots, getting sick at the drop of a dime," she says, rattling off the doctors' visits she's been to over the years.

Kendra's mother didn't tell her what was wrong with her, but made her take 10 pills a day.

"I would have to come in the house early and take medicine," she recalls. "I would take maybe one or two pills and maybe throw the rest in the trash. I wanted to be outside playing. It was hard." She remembers thinking, 'why me?'

Kendra is now 20 years old. She was 13 when the doctor finally told her she was HIV positive.

"I got really scared, and freaked out, and started crying hysterically," she says. "That was a wild day for me."

Kendra had contracted the disease from her mother who sat sobbing beside her. Her mother admits to Kendra it was her fault, and if she could, she would take it all back. But even as Kendra found out she had something in common with her mother, she realized she was different from other family members who don't have HIV.

"I have a younger sibling and an older sibling who are perfectly normal," says Kendra. "I'm not saying I'm not normal, I'm saying I have to wake up and think of this. Every day."

The stigma of HIV

More than 14,000 residents in Washington, D.C. are living with HIV — that's almost 3 percent of the District's population. The World Health Organization considers 1 percent the threshold for an epidemic.

Among those infected though, perhaps none are as vulnerable as children and adolescents. As they come to terms with a challenging medical regimen, they also quickly realize the stigma attached to HIV.

To the outside world Kendra is bubbly and outgoing. She doesn't tell anyone about her diagnosis, and says her secret is like carrying a heavy weight in her heart. At a time when she most wants to be like all her friends, her diagnosis isolates her. She hasn't even told her best friend.

"She would just look at me different, and try to give me sympathy," explains Kendra. "It's hard... to just sit there, and like hold it in."

When Kendra has an appointment, she just says she has to see her doctor and lets her friends assume what they want.

"They're like 'oh she has to get blood drawn, it's sickle cell,'" she says. "Because I always come back with band aids on my arm."

Kendra watches her friends go on dates, some even have children. She misses having a boyfriend.

"You really want to get to know a guy," says Kendra. "You're at the age, you want to have sex, but you're scared."

She remembers sitting through her ninth grade health class, listening to her teacher talk about HIV. And all those anonymous questions asking for specific answers? No one knew they came from her.

"All my questions got answered though," she says. "And it helped me learn how you can be a normal person and no one will ever know. So I thank God for that. That I still look normal; I don't look sick or anything." Kendra says she puts in the effort to dress fashionably because it makes her feel better.

She says the one place she can be herself is at the hospital. "Everybody who knows me here knows I have a problem, something I've been diagnosed with," she says. "I feel really free and open, and can really talk."

Kendra has a full-time job and is also a full-time student. She says she tries hard to remember all the blessings in her life, but there are times, like one day recently, when she feels God has forgotten her.

"I was in so much pain, and I was so tired," she says. "My back hurt, my head hurt. I just sat in a room, and I just thought, when will it be over? When will be my end point? That was the day I thought about death a lot."

She's anxious about whether she might become like her mother, who after 25 years of living with HIV has as Kendra puts it, "more down than up days." She wonders whether she'll ever find a partner who will accept her status. And she always worries that someone might find out. But Kendra has also realized how strong she is.

"I say just look at it like you have HIV, HIV doesn't have you," she says. "I look at it like I was put here for a reason. I haven't fully met that potential. I'm going to keep striving."

Adjusting goals and making different plans

In most cases the virus is transmitted sexually, but even though it's the same disease that needs the same medications and the same support, young people who acquire HIV sexually often feel the stigma even more strongly.

Luke*, who's 18 now, was 12 when he first had sex with a classmate. When he was 14, he saw a video about safe sex in school and decided to get tested for HIV. But he never went to get the results.

"I talked to my friend about it, and he said don't worry about it," Luke recalls. "You don't have it. So I didn't go and get my results."

Two years later, Luke donated blood and found out he was HIV positive.

"I walked out, my face was motionless, I was so confused," he says.

Luke says he knew unprotected sex put him at risk for HIV, but he just didn't think it would happen to him.

"I was young," Luke says. "That's everyone's thought. As kids, you think nothing's going to happen. Kids are just so ignorant."

This soft-spoken teenager doesn't allow himself to think about his life before HIV, whom he may have infected before he learned of his diagnosis, or even who infected him.

"I've really just blocked that out of my head," says Luke. "I got to think forward."

But in the early quiet morning, Luke admits he wishes he could rewind his life.

"Every day," he says. "Every day I wish I could live another life."

Luke has told two best friends about his diagnosis. With everyone else he's quiet when the subject comes up.

He hasn't told a single family member. His siblings are much older than he is, and his mother works two jobs. He doesn't want to upset her with the news.

"That's a pain no parent wants to know," says Luke. "If I were in her shoes, that's not the words I would want to hear from my child."

Besides, Luke says, everyone has a secret they don't want anyone to know. This is his. And it's one that's easy to keep at home.

"My mom doesn't come into my room," says Luke. "I clean my own room, I take care of it. I go to my own doctor's appointments."

Medicaid pays for Luke's treatment and medications, and he hides the paperwork. He's on one pill a day and doesn't have side effects so nothing much has changed on a day-to-day basis. But he has changed as a person. Luke had plans for his future before his diagnosis, but not anymore.

"I don't look forward to the rest of my life," he says. "I think I'm going to die young."

He sees life now not in terms of years, but in terms of fun.

"I'm not thinking of money, I'm not thinking of jobs, I'm just trying to make myself happy," says Luke. "I'm thinking short-term, making myself happy."

So he goes out all the time with friends. He has protected sex, but doesn't tell the girls he's with that he's HIV positive. He's determined to be optimistic.

"You can't think of life like it's horrible, it's hard," says Luke, because "it is hard. It is horrible. But you fall down; you've got to get right back up. You can't just fall, and sit there."

These children are trying their best to keep getting back up, but part of the challenge they face that they can't control is whether their friends, their families, and the outside world can start seeing past their illness.

This is the first part of WAMU 88.5's series on children with HIV in Washington, D.C.
*Some people's names have been changed to protect their privacy.

[Music: "Remembrance" by Balmorhea from All is Wild, All is Silent]


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