Saturday, October 24, 2015
It's YOUR Choice (Whether You Disclose Your HIV or Not)
When I was little I loved the color pink. I was so small for my age I still wore toddler sizes in first grade. I liked Dora the Explorer and Hannah Montana (Miley Cyrus). I wanted to wear dresses all the time and for a while I didn't speak any English, only French.
I'm not a little girl anymore. I'm a teen. I hate pink. I am taller than my Grandma and almost as tall as my mom. I think Dora is annoying and weird and Miley Cyrus is just nasty. I wear jeans more than dresses and my English is so good a lot of people get surprised when I tell them I'm from Africa.
I have changed. When I was little I wanted to talk a lot about HIV. I think it started when I had to go with my mom to all these classes about HIV. The people let her bring me every week. It was at night and I was the only kid. The other people were all grownups. Most nights I would color or draw or fall asleep but sometimes I stayed awake and listened. I didn't hardly understand whatever they were talking about but I knew it was about HIV and helping people. I wanted to help too.
I started telling a lot of people I had HIV and telling people how you get it and how you don't. I told people how you can stay healthy with meds too. I did this for a long time. I told teachers, friends, people at church, and neighbors. My mom didn't care that I told people but told me to be careful because some people are nice about it but some are not. I even begged to go to another state for a few days so I could do a training for kids to learn how to travel to all these different places and be part of a group that gives speeches about HIV at schools and businesses.
I even got a chance to meet Ms. America and go with her to give a speech. But that day I got scared and couldn't go on stage, so one of the grownups had to go out there with me and read my speech while I stood next to them holding their hand and looking down at the ground. I didn't know the crowd would make me feel so scared. I was so scared I thought I was going to pee on myself! That was the first and last time I did a big speaking thing. That's why now I write instead.
Things started changing. I went to a new school. I moved. I got older. I didn't feel comfortable telling so many people I had HIV. I am not ashamed to have HIV and it's not some big secret. It's not because I am ashamed that I don't tell people. It's because I am a teenage girl and I am dealing with enough of my own things. I have school, family, friends, health and other things in my head. Teenagers can be really stupid. So can grownups. People have been trying to teach people about HIV since before I was born. But a lot of people are still scared and ignorant. That's annoying and it would make me not want to talk to somebody anymore if they don't want to believe the truth. And some people start feeling sorry for you and acting like they should be really nice to you because they think since you have HIV you're about to die soon. I don't want people doing that. Don't feel sorry for me because I'm not dying. I might even live longer than you!
So it makes me a little sad sometimes when I see other families around where the kid has HIV and the parents don't and the parents tell the whole world their kid is adopted and has HIV without knowing if that is what the kid wanted them to do. They tell the kid's name and where they live and show their picture. It's okay if the kid made the choice along with the parent (if the kid is old enough), but as a person who is HIV positive myself I don't think it's okay for HIV negative parents to do that on their own.
I know the parents are probably trying to help, but I am worried because people change. I changed. When I was five, I wanted everybody to know. When I was ten, I wanted everybody to know. I'm a teen now, and I have decided I only want to tell people when I feel comfortable. Maybe in a couple of years I will decide to go back to telling everybody again. But now I'm not.
I can make the choice to go back and forth because the whole world doesn't know my business. But if your parents already announced it to the whole world when you were a little kid and now you changed your mind about so many people knowing, do you have that choice? Are you supposed to sell your house and switch schools? Start going by your middle name? And why should you have to do that like you're a spy? That's a lot of trouble. Wouldn't it just be easier for your family to wait until you're older and decide what you want? Because it's your HIV. It's not their HIV. You have it in your body, not them. So shouldn't you be deciding what's best for you - not people who don't have HIV? Even if they do love you a whole lot?
I do think it's cool when young people are comfortable telling lots of other people they have HIV. I have read about Paige, Jake Glaser, Shawn Decker, and Ashley Murphy. They are all people who grew up with HIV and don't mind going on the news or being in magazines talking about HIV. I also got to meet some people like that. I met Hydeia Broadbent who was born with HIV and has been telling people all her life since she was a toddler. I met Marvelyn Brown too, and she has been telling people since she was a teenager and wrote a book about having HIV. I also met a lady named Jeanne White-Ginder who had a son named Ryan White and before he died he spoke out a lot about AIDS.
If it's a kid's choice, doing that kind of thing is very cool and very brave. But I think it is just as brave to live your life with HIV and know who you are. I educate people about HIV without telling everybody I have it. I help in other ways like being part of HIV research, talking to state leaders about laws that affect people with HIV, raising money for AIDS Walk, telling teens about ways not to get HIV, and writing about my life as a girl with HIV. I am never going to go on TV or on a stage and talk about HIV. I don't even want to go on TV or on a stage and talk about my favorite music group! I'm too nervous for that. But I still have a job to do to help make things better for people with HIV.
You have a right to change. It's your mind and it's your life. I hope your parents and doctors make sure you know a lot about HIV and about people so you can be mature enough to decide. If you want to tell lots of people, I hope your parents will support you and not make you feel bad about that. If you want to keep it private, I hope your parents will support you and not make you feel bad about it. They aren't the ones with HIV, you are. But hopefully they will understand why you are making the choice you are making.
Both ways are okay if it was YOUR decision. If you are okay, that's what really counts.
If you get rid of the shame deep inside about HIV and love yourself it doesn't matter if only five people know or five million people know.
(My post was originally published on the A Girl Like Me blog HERE.)