healthmedicinet

Marvelyn Brown, diagnosed at 19
“I was diagnosed back in 2003, and I knew absolutely nothing about HIV then. I just knew in the back of my head that I didn’t want it. In my book, The Naked Truth: Young, Beautiful, and (HIV) Positive, I write about how I learned I had it while I was in the hospital being treated for pneumonia. So it was quite the shock—but I was almost emotionless because I didn’t know how to feel or really what that meant. I think the biggest shock to me was that a person who was heterosexual could contract the virus.

“I was unaware of the stigma that surrounded the virus when I was newly diagnosed. I had casually told my close friends—I knew their sex lives, they knew my sex life, that’s what type of relationship we had—and then word started to spread before I could tell anyone else. I noticed a lot of people were uneducated about the virus. I shared my story with The Tennessean, a local newspaper, and it became this national thing. That kind of paved the way for me to become a public speaker.

“It’s definitely easier to speak to a room of people who have all come to hear the person who has HIV speak than to tell someone privately. And even though I’m out there publicly speaking about having HIV, in my private life, I don’t want to talk about it every day. I want to be safe, I want to be secure, I want to be free of judgment. And while it can be difficult to date, for me, I’m not single because I’m HIV-positive—I’m single because I’m selective.

“This is 13 years into the game for me of taking medication every day—and there are definitely side effects. You have fatigue, you have nausea, you have an upset stomach. Some of the side effects have become so normal, I don’t even pay attention to them anymore. If I wake up nauseous, I know what to eat to soothe my stomach. I always keep Clorox wipes in my purse in case I get diarrhea so that I can wipe the toilet seat down if I’m in public. It’s become part of my life. I go to therapy, but I still go through periods of depression.

“I was unaware of the stigma that surrounded the virus when I was newly diagnosed.”

“Sometimes life is great, but sometimes I think, ‘What would my life be like if I didn’t have this?’ Or I hear too many ‘no’s’ in a row: ‘No, I don’t want to date you,’ or ‘No, I don’t want to be around you.’ When Charlie Sheen said he had HIV, I saw even some of my close friends laughing about it, and I had previously thought they had undestood what I was going through. So mentally, it’s hard because you do go back and forth.

“Looking at me on the outside, you’d never know I had HIV. It’s weird—I don’t want my friends to label me as someone with HIV, but at times, I don’t want them to forget I have it, either. The whole Charlie Sheen thing really threw me off. It’s like, ‘Okay, here’s a heterosexual man who contracted the virus, now people can identify.’ But then people immediately said, ‘Oh, he’s promiscuous.’ The same thing happened to me: I was this heterosexual woman who contracted the virus, and people would say, ‘Oh, she’s from the South,’ or ‘Oh, she’s black.’ People just don’t want to identify with the word human in the virus’s name. That’s the biggest misconception—that people don’t believe it can happen to them. I’m proof that it can. But I do want people to know that this is a preventable disease.”

Photograph courtesy of Rachel Moats

Rachel Moats, diagnosed at 29
“I was diagnosed on March 19, 2013. I had been sleeping with my best friend for a really long time, and we weren’t using condoms. I had been going to Planned Parenthood every three months to get my birth control refilled, and they’d do a finger prick test—I never thought twice about it. The test came back negative in December, but when I went in March, it was positive, and I knew there was only one person who could have infected me. I ultimately found out that he had been sleeping with a transgender sex worker, and that’s how he got infected. We’re still friends—a lot of people say, ‘I could never forgive him,’ but it’s not his fault. He didn’t know he was at risk.

“It sounds so ignorant now, but I never really knew that HIV was something I could get. I went to a small school in Kansas, and it just wasn’t talked about. When I first found out I was positive, I was so scared—my first thought was, ‘When am I going to die?’ I told a few people right away, like my mom and a few really close friends. I picked the ones I thought would react the best to tell first. I decided to make a blog—We Are HIV—and just wrote my story and shared it with everybody. Everyone was super-nice about it—even my boss at the time was really supportive. But sometimes, I have irrational fears. I went to visit a friend for Thanksgiving this year, and we had plans to go over to her sister’s house for dinner. I knew her sister knew I was HIV-positive because we’re Facebook friends, but I kept thinking, ‘What if she forgot? What if she makes me eat off of paper plates or makes me leave?’

“I have a 12-year-old daughter, and she understands what HIV is. Although I didn’t tell her right away, that first Christmas after I was diagnosed, she saw that I was writing my blog and asked what it was—so we talked about it. She asked if I was going to die, and I told her, ‘No. I have to take my medicine every day. Everything’s going to be fine.’ I’ve exposed her a lot to the HIV community. She’s not scared of it. I feel like a lot of parents don’t talk to their kids about sex, but my goal in life is to keep her safe in that way. I always tell her about using condoms and getting tested—sometimes she’s like, ‘Mom, I’m 12.’

“My first thought was, ‘When am I going to die?’” 

“I don’t know if I’ve even been sick since I became HIV-positive. I used to smoke cigarettes, which I gave up about a year after getting my diagnosis because I started reading about how people with HIV are more susceptible to getting cancer. I have gained a lot of weight, though—and my whole fear of rejection has played a huge part in that. As strange as it sounds, I can be super-courageous and wear T-shirts that have to do with HIV, but when it comes to dating and being in a relationship, that scares me really bad.

“Dating is really the biggest problem I have. Right when I found out I was positive, I went to a support group. I met this guy there—he we straight, he was positive, and he was so cute. We went out together, and we did all these normal things, like going to the grocery store. We never kissed or had sex, though, because he was a recovering sex addict. I was getting really excited about this relationship, but one day he called and said he couldn’t see me anymore because he couldn’t trust himself around me. It really broke my heart. I’ve tried online dating, and I’ve recently been on a couple of dates. I told both guys that I was HIV positive before we met, and they were both cool about it—but neither of them was my type.

“After I initially shared my story on my blog, I had this overwhelming desire to save the world. I wanted other women to know that this could happen to them. I speak at colleges to get the message out. When you share the most personal thing in your life, you never know if people are judging you. That’s when I found out how brave I really am. I recently took a job in New Orleans, where the HIV and AIDS epidemic is out of control—Louisiana ranks fifth in AIDS case rates in the U.S. There’s so much shame and stigma here, I want to bring more attention to it.”