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.
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.
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.)