Full disclosure

January, 2016. For the first time in months I had found someone on Grindr who it actually seemed might be pleasant to go on a proper date with: a handsome Italian guy who had gone to grad school in the U.S. It seemed too good to be true.

We got drinks one Friday after work. I had the usual first-date butterflies, but he was easy-going and, somehow, even better-looking in person than in his profile picture. We had decent chemistry — a rare occurrence. We talked about books, and I told him I’d lend him one I thought he might like. For a few hours at least, a real romance seemed like a possibility.

He had to wake up early the next morning to go skiing with friends, so after two drinks we parted ways with a hug. The next afternoon, I sent him a message to tell him that I’m HIV-positive, that I’m on meds and undetectable, and that I was attracted to him and hoped he would be okay with my status.

Over the course of the next two weeks, he never once acknowledged what I’d told him. Instead of saying directly that he wasn’t interested in meeting again, which I would have preferred, he kept up the pretense of trying to make plans but then always had some excuse of why he couldn’t meet on this day or that. Eventually, he texted to tell me that he had met someone at a party.

Of course, it’s possible that he was uninterested for any number of other reasons (maybe he really did meet someone at a party!), but it’s hard not to suspect that it was my HIV status that scared him off.

In the scheme of things, I’m one of the lucky ones. I had the complete support of my parents during the initial period of my diagnosis, when I got so sick that I couldn’t swallow food and I had to be hospitalized for a few days. I went on medication right away, and after a few months I was undetectable, meaning that the antiretroviral medications were successfully preventing the virus from replicating in my body.

During those first few months, I only told a handful of close friends about my diagnosis, and I haven’t told many more since that time. Worse than the physical effects of the virus was the feeling that I couldn’t or shouldn’t tell my friends about what had happened because they would be disappointed in me or disgusted with me.

From a physical standpoint, HIV hardly affects me at all. I take three pills a day and suffer little to no side effects. The long-term outlook isn’t bad either: according to the New England Journal of Medicine, “life expectancy and quality of life are close to normal for HIV-infected persons” who take antiretroviral drugs.

And yet even though I am healthy and have the support of my parents and some friends, my HIV status is still a source of shame and anxiety for me.

It’s not surprising why this is the case. When I was diagnosed, my image of someone with HIV was a “dirty” guy who had lots of condomless sex with lots of different guys. I didn’t want all of my friends and potential romantic partners to assume that I was like that too.

I can only assume that many other positive guys keep quiet about their status for the same reason. But this leads to a vicious cycle of silence and stigma. Few people come out as being HIV-positive, so you as an individual feel like you’re the only person you know who is positive, so you keep quiet about it too. As a result, both HIV-positive and -negative people are worse off, and nothing changes.

The hardest practical issue I face due to my HIV status is deciding when to disclose it to potential sexual/romantic partners. As far as I know, the CDC has not released any guidelines on this, and no doctor has ever given me advice about it. In an environment where guys rarely ask about your HIV status before sex, it’s almost always on the positive guy to navigate this himself. Obviously, it’s a difficult thing to bring up when you’re chatting away on an app or talking to someone at a bar (“I love Parker Posey too! Oh and by the way, I’m HIV-positive”).

While I know that I have an obligation to inform sexual partners, I also know that from a transmission standpoint it’s essentially a non-issue, given that I am undetectable and always use condoms. This is the idea of ‘treatment as prevention’ — see for example the interim report from the PARTNER study, which found zero transmissions of the virus from an undetectable person to an HIV-negative person in over 30,000 sex acts in 767 serodiscordant couples having sex without condoms.

I realize that I’m opening myself to criticism by acknowledging that I’ve hooked up with guys without disclosing my status. Perhaps if there weren’t still so much stigma associated with HIV — stigma that seems completely disproportionate to the transmission risk from sex with someone who is undetectable — it wouldn’t be so difficult to bring up before a sexual encounter. And HIV-negative guys who never ask partners about their status might ask themselves about the role they share in the silence around HIV.

On the occasions when I have failed to disclose my status, it has been in the heat of the moment, when an unanticipated sexual encounter was not preceded by hours or days of disinterested planning. Most of the time, though, I do address my status ahead of time, just like I did with that Italian guy I went on a date with in January. But it’s never easy. If sex isn’t imminent, a disclosure like that can seem presumptuous, and if it is imminent, the other person might resent you for not saying anything earlier.

Getting diagnosed with HIV was the loneliest experience of my life. More than three years later, despite the nonstop chatter of social media and confessional thinkpieces, I seldom see guys talking about their experiences living with HIV. The stigma surrounding the virus will never be defeated until that changes.

HIV is in the news less and less these days, but it is still an epidemic among gay men. The rate of new infections remains high, and the CDC estimates that in the U.S., about 1 in 8 people with HIV (over 150,000 Americans) do not even know they are infected.

If everyone consistently asked potential partners about their HIV status, whether on apps or in gay bars, positive guys would have an easy opportunity to disclose their status, and everyone else might ask themselves when it was that they last got tested.

And if more HIV-positive guys (who are safely in a position to do so) disclosed their status to wider circles of friends and acquaintances, whether through private conversations or broader announcements like this one, people who might have thought that they don’t know anyone affected by the virus would see more clearly both that HIV is still an urgent issue and that it is possible to live a normal, healthy life as an HIV-positive person.

The more open we are collectively, the less isolated and ashamed we will feel as individuals, and the more likely people will be to get tested and treated. HIV remains shrouded in silence and stigma — this can only change if we start talking about it.