Please Don’t Say Sorry To Me When You Learn I Have HIV
It’s a lot more than just the disease from RENT.
I was born on April 8, 1990, the day Ryan White died from complications from AIDS at age 18. White gained national attention when he was expelled from school after contracting HIV from a blood transfusion, and his death was national news. My mom took this timing as a sign I would be the person to find a cure for HIV/AIDS. The irony of that comment didn’t hit anyone until 23 years later.
I’ve always been aware of the threat of HIV/AIDS. I started coming out as gay when I was 14 years old and spent most of my high school career trying to read “And the Band Played On” and watching old episodes of “Queer as Folk,” crushing on just about every character. Neither of these made me an expert on the virus, but I am pretty confident I knew more about it than my classmates.
When I did start having sex at 18, I was very safe due to my intense fear of basically every disease ever. This was pretty on brand for me, since I’m an incredibly cautious (ok, terrified) person in general. I did some smart things to mitigate this fear, like insist on using a condom every time. I also did some stupid (and hurtful) things, like asking people if they were “clean” before I slept with them.
Because I was always so safe, I never really worried about contracting HIV when I was in college. In fact, I was so confident that I took a rapid HIV test live on camera on World AIDS Day for my college TV station.
After I graduated in 2012, I moved to Iowa to pursue a career in TV news and loneliness (because Iowa). A couple months after, I found myself at a fundraiser for a local organization that assists people living with HIV/AIDS. A guy I had been talking to online was coming into town from the other side of Iowa; this would be our first time meeting. In another fit of unforeseen irony, he would be the person from whom I would contract HIV less than a year later.
Roger (not his real name) and I slept together that night and continued to see each other whenever he was in town. In August of 2013, I got a text that has never meant anything good in the history of text messaging: “Call me when you a get a chance.”
I called him on my lunch break, half-knowing in my gut what he was about to say. We had had unprotected sex not too long ago, and we rarely spoke on the phone, so what else could it be? I didn’t quite expect it to be the big one but I knew it was something.
He told me I should get tested and we hung up. I made plans to do so that night, bought an at-home test—since the doctor’s test would take at least a week—then sought comfort in the one thing that remains a constant in my life: food. Specifically, a burrito the size of my head.
I don’t remember much of that following weekend, other than the fact that I didn’t leave my bed. It sounds cliché, but it really did feel like everything was crumbling around me. For so long I was so careful, and then I made one mistake that could change the course of my entire life. I played it over and over, lamenting about how simple it would have been to avoid all this.
What I do remember is that I was angry, mostly at myself for not insisting Roger use a condom, but also at Roger for not using a condom. I wanted to tell him how I felt—to lash out at him for doing this to me, though I knew it was far more complicated than finger-pointing. Instead, I didn’t talk to anyone that weekend, mostly because I didn’t have anyone to talk to.
When I was diagnosed, I was essentially alone. I had a few work friends, but not people I was super comfortable confiding in. Roger, on the other hand, had a boyfriend and friends and a support system. That also meant he had passed along the virus to more than just me. So even though I was alone, I felt like my own pain wasn’t valid. At least not as valid as his.
I felt like my own pain wasn’t valid.
I got my official positive diagnosis about a week and a half after my test. According to the Centers for Disease Control, I was one of 8,053 people in the United States between the ages of 20 and 24 diagnosed as HIV positive in 2013—more than any other age group that year. Millennials were experiencing a new HIV crisis.
I’m not an expert, but I have some ideas as to why this was happening to people my age. For starters, young people don’t believe they’re at risk for HIV/AIDS anymore. It’s written off as a virus from the 80s and 90s and a plot line in RENT, not something that could impact us today.
Which is to say, HIV/AIDS isn’t the big scary monster it once was. On one hand, that’s a good thing. On the other hand, its scariness is what partly leads to more caution. It’s not a great tradeoff, but it’s real.
I quickly got healthy. I was obsessive about it. I wanted to waste absolutely no time seeing every doctor I needed to see. My viral load became undetectable within a couple months and my t-cells rebounded fast. The virus is more than manageable today, with drugs that offer very few, if any, side effects.
HIV is an important part of my life, but it’s not the most important part of who I am. That said, I also know that dying from complications of AIDS is still a very real possibility. It’ll just happen much further down the road than it would have 25 years ago.
It sends people into shock when I talk so casually about living with the virus. I don’t keep my status a secret, but I also don’t broadcast it either, and when it came up at work, I got all the responses I would have expected. A lot of people said they were sorry or that I was very brave. One person said to me, “The entirety of my AIDS education is RENT. And there’s no science there, just love.”
The entirety of my AIDS education is RENT. And there’s no science there, just love.
And it’s not just straight white girls (the majority of the people I work with fit this description) who have these kinds of responses. My last (and only) boyfriend knew very little about HIV/AIDS. I was the first person he met who was positive, a fact that literally baffled me. Because of this, he was always very hesitant to actually have sex, and in the three months we dated, we never did.
The truth is, there’s nothing to be sorry about and I’m not particularly brave. Speaking outwardly about my disease only seems courageous because of the stigma attached, since it’s a virus you contract through sex. My response is simply this: when someone gets lung cancer after smoking a pack of cigarettes every day for 20 years, no one expects them to be ashamed, or says they’re brave for sharing their illness. HIV should be the same way.
Most of these awkward and apologetic comments don’t come from a place of malice, but rather from general unawareness. That’s why the Mr. Friendly movement, which is working to educate people in hopes of removing the stigma surrounding the virus, is so important. And I do believe they’re doing great things and making strides in education.
I also hope that by writing this—by putting all of this out there on the internet—it helps to humanize those of us living with the virus. HIV is part of my identity and there’s nothing shameful about that. My mom was wrong—I’m probably not the person who finds the cure for HIV (I was on the verge of a breakdown through most of my biology and chemistry classes, so) but hopefully, I can do my part to educate, which is also very important.
As you might imagine, writing this was an exhausting and stressful process, so I think it’s time for a burrito.