(Girls Health interviewed me for March 2017 for a blog post on their website! Here is the interview.)
Meet Mina K. She’s a teen who was born with HIV. However, Mina is determined not to let her status steal her joy. She says that HIV isn’t the boss — she is!
Mina is a blogger and youth advocate educating others about HIV and AIDS, which is why she’s serving as a National Women and Girls HIV/AIDS Awareness Day ambassador. She wants to share her story to help others understands what it’s like living with HIV. In her interview, Mina opens up about being born with HIV, what it’s been like to share her status, and educating others. She also shares her thoughts on what you can do to help end the stigma and on healthy relationships.
How old are you?
I am 15 years old.
Will you tell us about how you learned you had a health condition?
When I was a little girl, I knew something was different about me because some people acted weird and mean towards me. I didn’t know why, though. When I was five years old, my new mom (I was adopted) told me that I was going to need to start taking a medicine every day to help keep me strong and healthy. She said the medicine was like a boxer or a soldier inside my body that would fight off a “sickness” I was born with. I didn’t understand what she meant because I didn’t speak much English, so I thought she said I was born with a “citrus” (like a fruit) not a “sickness!”
Can you talk a little bit about your experience sharing your status with others?
The people I told first were my friends from elementary school. I was scared that they wouldn't accept me, but I didn't want to keep it from them. All of them accepted me and told me, "It’s OK." I feel very grateful to have them in my life.
I have told some other people, like teachers and Bible study leaders, and they accepted me, too. I have had a few friends who acted funny about it — like they were going to get sick by being around me. That’s annoying, but most people have been nice. Maybe it’s because I’m still a kid.
I know people are really scared of HIV and don’t understand it. I always worry about how people are going to act. I had a dentist who did not want to clean my teeth, and I had someone tell me to leave a birthday party (my mom got SO mad!) because they knew I had HIV. And I remember how some people used to treat me when I was little, and I didn’t like that.
It’s easier for me to tell people who I don’t know. That’s why I like blogging and advocating. It’s not the same as telling people you are going to see every day. It hurts when classmates and friends reject you more than strangers.
How did learning your status affect you growing up?
Sometimes it would make me so stressed to know that every night I take my meds, it means I'm still sick and will be for a long time. But my parents always tell me that I am just like everyone else even though I have HIV. They raised me to believe HIV is nothing to be ashamed of and as long as I take good care of myself and take my meds, I can grow up and live a long life.
Something that has helped me is being around other people with HIV who know what it’s like to live with it. My family is involved with different things having to do with HIV. I went to camps for kids with HIV and kids with family members who have HIV.
Can you talk about healthy relationships?
People with HIV need to love themselves, and people who don’t have HIV need to love and accept us. A lot of people with HIV feel like nobody will want them because of HIV, so they let people treat them badly. We deserve to have healthy relationships filled with love and to be treated with respect.
As an HIV and AIDS advocate, what do you do to educate others?
When I told my friends, I wanted to clear the wrong ideas that people have about HIV/AIDS. I said that me touching them, hugging them, or eating off of their plate won't give it to them. I also explained how it is transmitted, and if they were still curious, I would send them things they could read about HIV/AIDS to learn more.
I do the same thing when I advocate. I just talk to people. I’m not a doctor or a special person. I’m just a kid. But I do have HIV, so I know some things that doctors don’t know. Meaning, for a doctor it’s their job to know about HIV, but for me, it’s my life and I have firsthand experience.
I like to educate others by writing. I don’t like public speaking because I have really bad social anxiety. I blog about HIV for different organizations that focus on HIV and women. I have helped host webinars from the Centers for Disease Control and Prevention, and I’ve been part of a few online chats about HIV. I also sign up for HIV research studies and write letters to senators when there is a bill about HIV, and you can, too. I also helped start an online campaign against HIV stigma a few years ago, and I help promote my city’s AIDS Walk.
What do you think girls need to know about HIV and AIDS?
First, I want to talk to girls who have HIV. If you have HIV, no matter how you got it, it's not your fault. It’s not a fault, it’s a virus. Also if you hate taking your meds, just remember every time you take them, it means you are going to live another day.
To girls who don’t have HIV, please don’t be scared of people with HIV. We are just like you. But it’s good to know how to be safe so you don’t get HIV, too. Learn all you can so you can be in charge of your health.
What can other girls do to help end the stigma around HIV and AIDS?
Help others learn the facts. Even if you don’t know anybody with HIV, educate your friends and other girls so that they know how you get it and how you don’t so they know how to protect themselves.
You can talk to people in your school and government. Ask them to teach kids about HIV/AIDS so they understand it but aren’t scared of it. Another thing you can do is ask people to talk about HIV in a different way. We don’t like the phrase “infected with HIV.” There are other ways to say that. It makes me feel like I am just some deadly, nasty infection.
What's your advice for others living with HIV?
HIV will not make you into a whole different person. HIV is not a personality, and it doesn’t take away your personality. Also, please always take your meds even if you hate taking them. Those meds are your savior. They keep you and me alive!
HIV/AIDS is not the boss. YOU are the boss. It revolves around you. You don’t revolve around it. It is not always easy, but you have to fight. Show HIV you can beat it. In this war you’re having, you can live a long life and a good life with HIV.
Is there anything else you'd like to share?
I want people who have HIV like me to know we are all important and we can all do something to help. I used to say I would never be an advocate because the advocates I saw were extroverts. They were in magazines and on TV shows with their full names, and they were very open. I could never do that. I am loud and giggly, but I’m very introverted and private. I am not ashamed of having HIV, but I will never be like the people who are so public. I am a girl who likes to work behind the scenes, not be the star on the stage. But as I’ve gotten older, I’ve learned that we all have a place. If you are OK telling everyone you know you have HIV or if you only tell one person and educate just that one person, you still did something good! You don’t have to try to be like anyone else. Just being yourself is good enough.
Find out what every girl needs to know about HIV and AIDS and other sexually transmitted diseases. You can also learn more about National Women and Girls HIV/AIDS Awareness Day and healthy relationships.