I forgot to take my meds right before the Los Angeles AIDS Walk. Pretty ironic, huh? You’d think that since I’ve been HIV positive for all of my 22 years and on meds for 17, I wouldn’t screw up—especially before walking six miles to raise awareness for the disease. What rattled me most, however, was the memories it revived from high school, when I battled with med adherence—and lost big time. I skipped so many doses that I’m resistant to the whole class of NRTI meds. Luckily, I’ve found another regimen, and I’m very healthy, but I can’t risk my safety again.
In the fall of 1998, I moved from Key West, Florida, to live with my aunt and uncle in suburban Boston. They enrolled me in a large public high school and told the administration and my teachers about my status. The students weren’t told—except for a few I disclosed to. I found my niche: I joined the drama club, the choir and the color guard and made cool friends. Still, taking 14 to 20 pills two times a day, with all the food requirements, was really tough in that environment. There’s so much else to adhere to: being cool, fitting in, keeping my grades up. I felt that taking my pills made me different, even though hardly any of my classmates knew I was positive. While other kids struggled with the pressure to take drugs they shouldn’t take, I felt pressured to skip drugs I had to take.
The pills were huge, and swallowing them was hard. I hated starting my school day with 19 pills rolling around inside me. As a result, by the end of my sophomore year, my room had become a minefield of missed doses. I hoarded them in plastic baggies and socks, behind books and clothes. When I started fainting and getting weird rashes and fevers and swollen glands, I lied to my doctors and said I’d taken the meds. My aunt and uncle, meanwhile, weren’t monitoring me closely. I would always take meds when they were in the room, but they made the mistake of trusting me at other times.
Though my body was falling apart, I was doing well in school. Our color guard was asked to perform at a Red Sox game (a dream for a fan like me). A few weeks before the event, my aunt confronted me with some baggies she’d found. I fessed up and pulled out my stockpiles of missed doses. The next day, she and my doctors admitted me to the psych ward at Children’s Hospital Boston for “passive suicide.” A part of me is grateful for that intervention, though I’d never thought about killing myself. I just didn’t want to take all those pills that made me feel sick.
The Red Sox performance took place while I was in the hospital, so my doctors gave me a day pass. I surprised my classmates, and we had a great time. Afterward, my aunt and uncle were supposed to pick me up and return me to the hospital but got stuck in traffic. When the chaperones couldn’t wait any longer, the whole busload drove me back to the psych ward. Talk about embarrassing.
The hospital staff helped me through my pill anxiety—developing side-effect strategies too—and I was released after three weeks. That began a process of self-acceptance and more disclosure. Once I was out about everything, the wall that I let HIV build between me and “normal” people crumbled. My medication is no longer a reminder of my difference, just something that helps me maintain a busy, happy life. I guess it’s all just a part of growing—and growing up—with HIV.