Sunday, October 31, 2010

"Stay Away from People with HIV?"

Below is the continuation of the previous blog post regarding a child's experience with disclosing her HIV status at school.

Even though I told my friends I had HIV, everything was still okay. Everybody was acting the same. Well, not everybody. Mary* was acting funny with me. When I went into the bathroom, she would leave. When we had science lab, she would switch partners. Outside, she would play with other friends, but not with me. I knew it was about my HIV, but I couldn’t prove it.
I got lucky one day at recess. My allergies were really bothering me, and I had to stop playing and sit down. My eyes were watering really bad, so I was rubbing my eyes and stuff. Mary came over and said, “I saw you stopped playing. Are you crying?”
“I’m not crying,” I said.
“Yes, you are! Your eyes are watering!” she said. Before I could explain it was my allergies, she said, “It’s okay. I know what’s wrong. You’re sad because I won’t play with you anymore, right?”
I said, "Why don't want to be my friend? Is it about the HIV?”
“I AM your friend!” she said. “I just don’t want you to touch me, that’s all. My mom says if anybody has AIDS, stay away from them. They can give it to you, and you can die right away. I don’t want to get it, so I want to be your friend, but just not the normal way.”
I could NOT believe it. “Your mom is wrong!” I said. “She doesn’t understand about HIV. Do you really think someone is going to die in 5 seconds if someone with HIV touches them? Then why aren’t you dead? I’ve touched you all school year. Why isn’t the teacher dead? Why isn’t the whole class dead?”
“I don’t know…” she said. I cut her off.
“You go to the doctor, right?” I asked. “Yes,” she said. “Well, did the doctor tell you have HIV? No, he didn’t. It’s not that easy to get. Ask your doctor if you don’t believe me.”
“My mom is smart,” she said. “She wouldn’t lie about this.”
“Maybe she wouldn’t lie, but even smart people can make a mistake,” I said. “What your mom said is not true. Look, if you don’t want to touch me, then I don’t want to be friends. I don’t need a friend who is scared to be around me.”
“I DO want to be friends!” she said. “Is it okay if I only touch you a little though? My mom said if I play with you, I have to be careful.”
I still thought it was silly, but I decided to be nice. “Okay,” I said. “We can still be friends. Just stop acting so freaked out about it.”
“I promise I’ll try,” she said.
I don't know if I trust her, but I'll give her another chance.

Thursday, October 14, 2010

Kids will be kids...

Recently, my daughter spontaneously decided to disclose her HIV status to some friends at school. Though we have completely disclosed to family and close friends, we had not done so at her school. However, she felt that it was important to her that her friends were aware of her status, and broke the news. Here is her account of how it went (with Mom's grammar and spelling editing):

"One day I was playing with my friends at recess, and I tripped and fell on the blacktop. My knee started bleeding really bad, and it kinda hurt. My friends rushed over and tried to help me clean my leg. I told them I was fine, and that they didn't need to help me; all I needed was for them to help me up. One of them still kept trying to reach near me leg, so I told them not to touch my blood or anybody's blood. Then I went to the nurse and got cleaned up and put on a Band-Aid. When I came back, we were in the cafeteria. Everybody kept asking me, "Why were you acting so weird? Why couldn't we touch you on your knee? It was just a little blood, not a big deal." I answered them, "It was a big deal. You're never supposed to touch anyone's blood because you don't know what they have." I could tell they weren't really paying attention and didn't think I was making sense. I was frustrated because it's like kids don't know anything! I felt like I needed to talk to people about HIV and stuff--how you can get it and how you can't. Like just get up on the school stage and talk about it or something, but I couldn't. If I just walked on the stage like that during lunch, I could get in big trouble. And anyway I would be nervous to do it by myself. I can get on stage and do stuff with other people, but by myself I would get nervous and start to sweat a lot and feel like i have to pee! So I decided to just tell my friends instead of everybody.

"Guys," I said, "Don't freak out or tell everyone in the whole school this." I said to myself, calm down and relax. "I have something to tell you. I have HIV."
They looked surprised. "How did you get it?" they asked.
I said, my mom had HIV and didn't know, so I got it too.
"What if you touch someone?"
"If I touch someone, you won't get it. But you shouldn't touch someone's BLOOD, because HIV is in the blood."
"What if you don't know you have it? Could we have it?"
"No, you would know if you did something where you might get it. Like get born with it, or have sex [Mom's note: we've talked about sex, but I never used the actual word and didn't even know she knew it! That's a conversation in itself...] without using protection or share shots. You go to the doctor, and they can tell you if you have it."
"How did your mom get it?"
"IDK," I said. "It doesn't matter how. Even if you have HIV, you can still be a normal person."

This is generally how the first part of the conversation went. In the next post, I'll share how she told me they reacted.