World AIDS Day
A personal story
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December 1 is World AIDS Day! It has been since 1988, when the world was incredibly different and yet incredibly the same. This year’s theme is “Ending the HIV Epidemic: Equitable Access, Everyone’s Voice.”
As with Trans Day of Remembrance, I don’t want to write a piece that’s just an avalanche of statistics—you can get those lots of places—but rather a personal story.
I know a lot of folks reading this may never have learned that a loved one has HIV, may never have even been tested for HIV themselves, don’t know anything in particular about the early history of HIV. Some great, accessible movies can help you connect with the origin story of HIV/AIDS in America. Philadelphia, with Tom Hanks and Denzel Washington, from 1993, was groundbreaking at the time. Dozens of people with HIV and AIDS were part of the cast of Philadelphia. By 1995, most of them had died. Today, there is one survivor—you can learn more about her here (podcast). And there’s a new production of Angels in America on HBO Max starring basically every actor you ever loved. No story is perfect and no story can be every story, but wow is this a good one.
Okay, so now: a personal story.
It was a long time ago, and I’m not going to describe any personal details about my friend—not their age, not their gender or sexual orientation or race or faith or job or what country we were in. And don’t imagine you know who gets HIV. About half of people living with HIV in the US right now don’t know it.
Just imagine a friend and me having breakfast. We’re just eating eggs and pancakes at a restaurant and they say, “I have something to tell you.”
“Okay,” I say. The tone of their voice makes my mouth go dry. I put down my utensils and take a breath, braced for bad news.
Very, very quietly, so softly I can barely hear and certainly no one else in the busy restaurant can, my friend says, “I have HIV.”
My face goes cold and white noise rushes in my ears. This piece of information floats around my brain looking for a place to live, somewhere it fits, and there just isn’t anywhere.
“What?” is all I could say.
“Don’t make me say it again,” they say, genuinely pleading.
I nod at my plate, trying to gather up all my skills and knowledge and somehow compensate for the fact that my first response was so thoroughly inadequate. People had disclosed their HIV status to me before in a professional setting, but a friend? In a restaurant? If, the day before this happened, you had asked me if my professional experience would be excellent preparation for hearing a friend disclose, I would have said yes, of course, I’d be a good person to tell.
I want to be a good person to tell. So far I’m not doing amazing.
I look up at my friend’s face and try again. I say, “How are you?”
They say, “I’m okay right now.”
I nod again. “How much do you want to tell me?”
They want to tell me a lot. They tell me the history of health issues they’d experienced. They tell me about getting tested and learning they were positive. They tell me about the medication regimen they’re on, they show me the pills. They tell me they didn’t really know how it happened, that they always used protection, they used it well, it seemed like it was just a toss of the dice. Roll enough times and eventually…
It was a long breakfast. Our eggs got cold and our pancakes got rubbery.
My reaction was not a model for how you should respond when a loved one discloses a positive HIV status, but I can say that I did one thing right: I listened without fear. I didn’t lean away from my friend. I stayed right there, even while I was waiting for the information to find a place to land in my brain.
One last thing I did right: I said, “Thank you for telling me.”
A while later—months or years—I went to their birthday party. I was among the few attendees who knew their status (this is not information you give just anyone). Toward the end of the night, my friend sat next to me and said, “I’ve gotten really good at it. Did you even notice?”
“Notice what?”
“I took my drugs.” They pulled out a plastic flip-top pill container, now empty, and tucked it back away. “You have to take them on a really strict schedule. I’ve gotten so good at being stealthy at taking them no matter where I am.” They gestured at the crowd.
My eyes widened and I smiled. My friend was bursting with pride, so all I could do was burst along with them. “I didn’t notice at all!”
These days my friend is undetectable. They’re married. They’re a parent. I love them so much and I am so proud they’re my friend. But I want to live in a world where they don’t have HIV anymore. I want a cure. After 40 years and roughly 40 million lives lost, we still don’t have a cure.
HIV isn’t the death sentence it was in 1988, when the first World AIDS Day was recognized. Still, learning that a loved one has HIV is hard, and living with HIV is harder. To end HIV, we need a vaccine, and we need a cure. But we also need to end the stigma. This is my tiny, tiny contribution to that.
What are you going to do? Just learning is a great start. Remembering is important, too. And don’t be afraid. Don’t lean away. Stay right here and learn more.
Questions or comments? Please email my very tiny team at unrulywellness@gmail.com
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Stay safe and see you next time.
