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.
People change.

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.)

Monday, May 4, 2015

Friend or Frenemy?

A few months ago, I became pretty close with a girl at my school that I will call E. E and I knew each other last year, but we weren’t as close as we are this year. We get along really well and love to hang out, text, call, and go places with each other. I was really glad to have made such a good friend. But something bad happened not long ago that threatened to mess our friendship up. It had to do with bad information about HIV.

My family is trying to adopt another child with HIV. Like me, the baby is from another country. I was so excited when the agency sent us his pictures and file. He is the cutest ever. Since E and I are good friends, I wanted to share my good news with her. I texted her that I might be getting a baby brother soon and that I was so happy. She texted that she was happy too. I texted her his age, his name, and sent her one of his pictures. In the picture he has an IV in his arm. She texted to ask me why he had an IV and I told her that he was in the hospital. She asked me why he was in the hospital and I said that he had HIV and had gotten sick, so he was starting HIV meds.

She acted very strange. She texted me that I needed to be careful when he comes here to live because he might “give” me “AIDS.” She told me that I shouldn’t share food with him and that I needed to be careful with his spit up and diapers too or I might “catch AIDS from him.” I was totally shocked. I thought she wouldn’t act like that since she knew that I did things for HIV. Like she knows that I raise money for AIDS Walks and go to HIV meetings with my mom and stuff. But I guess she didn’t realize that I have it because we never talked about it. Now I was sad because not only was she throwing shade on my future little brother, I figured she would have a problem with me too, since I have the same thing he has.

I texted her that you can’t get HIV from saliva and baby diapers. We then started arguing through text messages. She said that you COULD. I said no, you only get HIV from sex, needles, and birth. She said that I was wrong and that her parents had told her you could get it from blood, sweat, saliva, and pee. She said her parents studied science in college so they knew a lot about health stuff. I told her the stuff they learned must be really old because it was wrong. I was getting really upset and texted brb [be right back] to her.

I felt really frustrated. I went to my mom and asked if she could text me some websites about HIV for a friend. She asked me why, and then noticed the sad look on my face. I handed her my phone and she read the messages. “I’m so sorry, baby,” she said. She told me not to be mad at my friend and her parents because they were just ignorant about HIV and didn’t know they were wrong. She gave me three websites and I sent them to my friend.

She said that she would look at them later to learn more. I hoped she would. I felt like nothing would be the same between us anymore if she had a problem with people with HIV. Because I am a person with HIV. I care about her a lot, but if she can’t accept HIV then our friendship is not going to last.

I don’t want people around me who are scared that they are going to “catch AIDS” from me.

(My post was originally posted on the HIVE Online blog HERE.)

Friday, April 10, 2015

We are People, Not Infections

Hi! I’m Mina. I’m a teenager and I’m in middle school. I’m adopted and I have a big family. I’m HIV positive. I’m the only one of my family members that has HIV. My brothers and sister didn’t get it when they were born because only some babies born to a mom with HIV actually get HIV. I am one of the ones that did.  I’m just like any other middle schooler that you could ever think of except I just have one difference – HIV. Nobody can see it; it doesn’t show. I have to tell them.

I’m a very goofy and silly girl. I love to have fun with my friends and enjoy myself. I want to be a psychologist when I grow up. For some reason I get really good grades in English class even though it’s not my first language and sometimes I still say stuff wrong! I am good in science too. I like math a lot, but I totally suck at math. It’s so hard!

My hobbies are dancing and Kpop (Korean pop). I love watching people dance and copying their movements, especially hip hop dancing. And I like to choreograph – make up – my own dances for my friends and I to do for fun. But I like listening to Kpop music and watching Kdramas (Korean dramas) even better than dancing.

youngwomen_nyhaad Since I’m a kid, I thought it was a good idea for me to write something for National Youth HIV/AIDS Awareness Day. It’s a day when people think about HIV and issues that are important to kids and teenagers. We are different from adults and have our own problems and our own things going on. But there are some things that are a problem for kids and for adults too, no matter your age. Like getting treated badly, or being hurt by the things people do to us or say to us.

Words that Hurt
I did not like it at ALL when I found out that people with HIV and AIDS were being called “HIV infected.” I DO have an infection, but I don’t like to be called that. And if they think about it, no one who is HIV positive would want to be compared to an infection. No one period would want to be called that. It’s just not a very nice thing. It’s almost like calling someone the “R” word instead of saying they have intellectual disability. Something that is called “infected” sounds really disgusting, and gross. I have HIV, and I know for sure that I am NOT disgusting or gross.

It hurts my feelings a lot to be called “HIV infected.” A LOT. I would rather be called an HIV positive person, or a person with HIV. Not an “HIV infected person” or a “person infected with HIV.” If you have HIV you already know you got it through an infection, so isn’t it kind of like overkill to say “HIV infected” anyway? I mean, there’s no other way to get HIV. You can’t buy it from the store or order it online. So by saying “infected” next to HIV you’re saying something extra you don’t need. We don’t say “mammal dogs” when we talk about dogs because we already know they are mammals.

I want to change this. I don’t want any other kids or adults with HIV to have to feel the way I feel. To be hurt and feel like something is wrong with you when you hear or read how you are “infected.” I want kids with HIV to be proud of themselves. So a few months ago I talked to my mom about how I was feeling and I decided to let the whole world know that I am #NotYourInfection. I’m a girl, not an infection.

NotYourInfection I read in school about “Rosa’s Law” and I thought it was really cool. I don’t know if you ever heard of “Rosa’s Law” before. Rosa is a girl who is a little younger than me. She has intellectual disability just like my brother does. People kept calling Rosa the “R” word and since that was the actual name back then, it was hard to get people to stop using that word. But when people realized that that word was being used to bully people, they found something better to call it. They did this even though the “R” word was the real name and was very common, because people are more important than words. They changed all these laws and got rid of every place where they said the “R” word. So now Rosa and lots of other people don’t have to worry about being called words that hurt them.

I hope that I can change things for people who have HIV like me, just like Rosa did for people like her and my brother. I can’t make people stop calling us “infected” but the governors and the President and all those people in charge of laws can. I want all the laws to be changed so that they say “HIV positive” instead of “HIV infected.” I know that HIV IS an infection, but it’s also just a disease. And unless I’m hearing other diseases like measles and the flu that you also get through an infection being talked the same way, using “infected” all the time, I don’t want HIV getting treated that way.

Actually, I don’t want any disease or sickness to be called that, even if it would be more fair. I’d rather it happen to none of us. It frustrates me to think about all these laws and all these different places where “HIV infected” is written. It doesn’t sound right and it doesn’t make sense to me. Am I supposed to feel okay when I get older reading that stuff about people like me? I’m young now, but I will get older. It doesn’t sound very pleasing to me, and I don’t think using “infected” helps other people accept us.

People are already scared of HIV and words that remind them that people have “HIV infection” just make them more scared so that they will keep thinking bad things about HIV and people with it.  Some people might not think being called “HIV infected” is a big deal. I think it is. It hurts and it makes me feel like I am dirty and unworthy and like I’m not a real person but just someone who can “infect” people. The word HIV doesn’t make me feel that way. Only the “infected” part does. To the people who don’t think it’s a big deal, I want to know how many of you actually have HIV? Maybe it’s not a big deal to you because nobody is ever going to call you that. You don’t live with HIV like I do, so maybe it doesn’t seem important. But has anybody ever called you a name? Didn’t that hurt?

My parents told me a long time ago before I was born they used to call black or African American people “Negroes” and they used to call Asian people “Orientals.” Nobody gets called those things anymore because it hurts people. Even if I AM a “Negro” I don’t want to be called that. I think that the people should get to pick what we want people to call us. Even if doctors and everybody else doesn’t see what’s wrong with saying “HIV infected,” they should care that it is hurting our feelings. I have HIV and I hate being called infected. And I bet if they take some time to think about it, other people with HIV don’t like it either.

A lot of people panic over HIV, but it’s not the worst thing in the whole entire world. I’ve been taking my meds since I was young and I feel healthy.  I feel like any regular teen; I just take meds. By looking at me, nobody would ever guess that I have HIV because you can’t tell by looking at people. We don’t look sick and we don’t look “infected” the way a cut or something that gets infected looks all nasty with pus and stuff. People are trying to stop a lot of the bad ideas and wrong stuff that is out there about HIV so that we can be treated like everyone else. But how is that going to ever happen if we use these kinds of words?

If I tell somebody, “I’m Mina and I’m HIV infected,” or “I’m Mina and I’m infected with HIV,” it’s like I’m saying it’s okay to describe myself the same way you describe something that is disgusting. And nobody thinks infections are good things and I think the only reason people don’t seem bothered about it like I am is because they are used to it being called that or calling other people that. They don’t think it’s bad because that’s what people have always said. But just because something has always been that way doesn’t mean it’s right. I’m a regular kid LIVING with HIV and I don’t want to be called “infected with HIV.” Call me HIV positive, or call me Mina. Don’t call me infected. I’m #NotYourInfection.

Life with HIV
If you’re wondering if it’s troublesome for me to have HIV, it’s not. Listen, please: other people who have HIV – especially someone who just got it, because they might be panicking. Listen, young people, older people, teenagers, kids, whoever. It’s going to be okay. If you take your meds properly – even if you have to take it every single day of your life – at least it’s keeping you healthy. At least you can keep living your life and doing stuff like every other person, just with meds.  Just imagine it. I understand that some people might get annoyed by taking meds every single day, but try not to stress about it. If you have a migraine you take meds and if the first dose doesn’t work when it’s time you take another one. If you have a cold you take meds and you keep taking them every day until it is gone because you know by taking them you’re going to get better. Our HIV meds help us get better. If you decide not to take them, you might be okay for a while, but eventually you will probably get sicker and sicker and then when you go back on meds you have to take even more meds than you had in the first place. So what’s the point?

Me having HIV – it’s not a big deal. When I heard the news about me being HIV positive when I was young at first I didn’t really understand it because I didn’t know much about health stuff, plus I didn’t really know English. But when I got little bit older, I started to tell my friends and stuff.  I told my teachers and people at my church too. Everybody I know doesn’t know I’m HIV positive, but a lot of people do know. When I first told them, some of my friends got paranoid, but most got over it. And some of them didn’t have a problem with it at all in the first place. All of these people who know are still my friends today.

I know it’s different too because I’m young. Lots of HIV positive people who are older are going through a whole lot of bigger troubles and they have a lot of things going on in their lives. They might be worried about telling friends, telling their boss, telling the people who you date, stuff like that. Everybody is different, but I believe that I’d rather just tell them. When you’re ready. You might need some time to get ready. Get to know the people to make sure they’re someone you even want to have in your life. You might need weeks. You might even need a whole year! But you need to know that some people DO have a bad reaction. I’ve had that problem. Even though it’s not as easy to get HIV as everyone thinks, some people still freak out about it. You might have to lose some people if they can’t deal with it. But there may be some people who don’t react well but when they take some time to think about it then later they’re okay. They might need to search up some stuff about HIV and then they’ll realize that it’s not terrible.  People need to realize that people like me aren’t like some vampires or werewolves out to get people. We just have a disability – HIV.

I’m glad I got a chance to write this because I am too shy to talk on stage in front of big groups but I am fine writing down how I feel. Since I am a teenager I have changed from when I was little. I used to tell almost everybody I had HIV. Now I think it over first and take some time to get to know people. It’s NOT a secret, but it is private. Just because you might not tell the whole world doesn’t mean that you think it’s a bad thing that you have to hide. It’s like if you have a crush on a guy. That is SO not a bad thing. You might think it’s the best thing ever. But I would totally keep that private because it’s so important and you have to be careful who you tell to make sure you can trust them with something like that. HIV is like that kind of.  It’s only one thing about you. It’s not the only thing or the most important thing, but it is still important.

Please help me to get the world not to be so scared of HIV and people with it. Will you join me?

(A similar version of my post was originally published on the Positive Women's Network USA blog HERE.)