We often talk about prejudice and stigma relating to HIV / AIDS, and in everything we do, attempt to combat this stigma. Not enough people stand out, and sometimes those that do, speak about stigma on a grand scale. Coming up, Rich Juzwiak, an editor at Gawker has posted a wonderful, honest and frank article about understanding the nature of HIV in the context of sex between men from a presumed HIV negative viewpoint.
What is particularly noteworthy is Rich’s unbiased honesty and openness throughout his article. By asking the right questions to people he is meeting for sex (or not) he’s gained a much improved understanding of viral load, and the risk factors involved when meeting people for sex. Sharing his experiences not only provides an education and insight to HIV negative people, but also informs HIV positive people just how little knowledge there is on viral load and transmission.
In addition to the work of organisations like LASS, the Terrence Higgins Trust, the National AIDS Trust and many, many more, the real advocates are the people (regardless of HIV status) who ask questions, understand what’s going on and share their knowledge to the wider public so we can all know our HIV status and enjoy shared companionship whether that intimacy is based on sex, or conversation.
(Would you like to listen to this article instead? Click the play button below…)
The first guy I ever turned down on Grindr for having HIV, my patient zero if you will, is all kinds of hot: hot in the face, hot in the body and hotheaded. In May, he asked me to come over and make out. We chatted a little bit more, he told me about his status and I slipped out of the conversation, just like that. Randomly in July, I noticed him at a movie theater: On Grindr and online, people lie with pictures all the time, choosing ones that distort their appearance in a captured second, but I was able to pick Miguel right out of a crowd. His picture is a symbol of habitual honesty, maybe, but also because he’s so attractive, he has no reason to lie.
“This always happens: someone will feel bad and then they’ll see me out and they’ll be like, ‘Oh my god, you’re so fucking hot,'” Miguel told me while we waited for our table outside of a Chelsea brunch spot one Saturday in early July after I reconnected and asked him to talk to me.
Miguel told me that being turned down for sex because he’s HIV-positive is something that happens “all the time,” and that “almost every time, the minute someone gets to know me, their mind changes.” Exposure to a gay friend often converts homophobes swiftly; the same can be said of an HIV-positive guy meeting others who are fearful. It’s somewhat reassuring that that’s all it takes in many cases, but it also underlines the exponential burden put upon positive guys. They are either in a constant state of proving themselves socially or they are sitting on a secret.
As a gay man in New York with an active, multiple-partner sex life, the chances are that I have hooked up with an HIV-positive guy or five and didn’t know it. Maybe I didn’t know it because he didn’t know it. Maybe I didn’t know it because he was a liar. Maybe I didn’t ask.
Granted, I generally play it safe, keeping fluid exchange at a minimum, using condoms, opting for oral over anal almost every time, and especially with strangers. (Although, as we are coming to realize, oral sex maybe isn’t as safe as we’d like it to be). Even with that in mind, getting tested is never less than horrifying, no matter how regularly I do it. There have been times, especially after suffering from a weird flu-like bug that no one else around me seemed to contract, that I have been sure that I would test positive.
I haven’t yet. I think I’m HIV negative, but since the virus can take three months to show up in blood, I can’t really be sure. In fact, none of us who are sexually active can be sure – except for those who are HIV positive.
Therein lies the hypocrisy in turning down a potential hookup who a) knows his status, and b) is honest about it in favor of one who doesn’t or is lying about it. That kind of discrimination is motivated by fear of the known while taking an agnostic approach to the unknown. It’s especially foolhardy considering that guys who know they are HIV-positive tend to be healthier and with lower viral loads than guys who don’t know they have it and are going untreated. The kind of optimism that assumes someone’s word is as good as a hard copy of a test result is potentially life-altering.
And yet, I’ve turned down guys who are open about their positive status. I watched the onset of AIDS in the ‘80s through the confused eyes of a child. I had it drilled into me that this was a disease to stay far, far away from. I also know better than to sleep with someone who announces himself as HIV positive. Or knew. Now I’m not exactly sure what to think. I feel guilty and scared, but not necessarily in that order.
I forgot to ask Giovanni* his status on Grindr before he came over. I remembered once he was inside of my apartment, discovered that he was HIV positive and asked if he’d like to be interviewed instead of hooking up. He agreed.
One of the first things we talked about was what complicates the situation the most: The widely held idea (at least among the HIV-positive guys I talked to for this story) that antiretroviral medication, which reduces the amount of HIV in a person’s blood to undetectable levels, is a contagion cure-all. That is to say that many people believe that it is virtually impossible for guys who identify as “poz but undetectable” to transmit HIV to a sex partner.
“I feel a little bit discriminated against just because if someone is taking care of themselves, there’s no risk on it, unless you have cuts or you’re bleeding,” Giovanni said. “But even then, you have to have a high viral load. If your status is undetectable, it’s very rare that someone else can catch from sucking.”
Giovanni contracted HIV about three years ago from his boyfriend who lied to him about his status: His partner said he was negative, they repeatedly had bareback sex, it turned out his partner was positive and it destroyed their relationship. “I blame myself,” he told me. His regard of personal responsibility is also present in his current philosophy regarding disclosure. If he’s not asked directly, he doesn’t open up about his HIV status.
“There are people that never ask me about my status, so I just go and assume that they have it,” he told me. “If you don’t ask me, I assume something’s wrong with you.”
I found this point of view disturbing, but most of what else Giovanni said was endearing. He told me that he empathizes with the people who are too scared to hook up with him and who turn him down: “I was there before it happened to me…I know how a person feels. When someone says you’re positive, your world changes.”
And so does the world of the person who has it. “It’s not hard to find somebody that accepts me the way that I am, but I don’t know…” he trailed off.
Before he left, I gave Giovanni a big hug. We were intimate and raw and we never took our clothes off. We talked about staying in touch and getting together again soon but it never ended up happening.
In early June, I lost interest in Chad when he told me he was “poz/undetectable” on Grindr. I didn’t respond to something he said, and 10 minutes later we shared this exchange:
Chad: Haha is that a no? I can take it 🙂
Me: It’s so weird, the situation. I don’t want to seem like a dick or discriminate. You know?
Chad: People discriminate all the time. But if u think I would put you at risk, I disagree. And guys think honesty makes things more dangerous.
Me: Tell me more about how it wouldn’t put me at risk.
Chad: Safe sex with an undetectable guy has no real risk, never been a documented case of transmission. But if you’re feeling spooked it’s no fun for either person ;). Xx.
Me: I need to do more research. I didn’t know that.
Chad: Take care.
I attempted to engage Chad again and he didn’t respond, not that I blamed him. In July, though, we met face-to-face through a mutual friend. I already knew who he was the second I set eyes on him from afar. From there we resumed communication and I’m glad: he’s attractive with intellect balanced out by an easygoing attitude. He’s exactly the kind of guy I want to be around. He’s also an AIDS activist, and thus particularly informed on the matter at hand.
“Lack of communication and lack of conversation around HIV is a big issue,” he said when I asked him about anti-HIV discrimination. “You have this turning point where the drugs start working well enough so that people won’t be outed by their physical appearance and then talking about HIV becomes a choice. Gay people were very tired of being associated with HIV and AIDS and it just kind of went underground. That’s the birthplace of the stigma. As soon as it became something you could disguise or put away, then it became a question of character.”
Chad’s activism doesn’t turn off when he logs onto Grindr. He says he regularly schools people on the app, as he did with me. He makes education sound like foreplay: he says the type of guys he’d be attracted to anyway are those who are knowledgeable on the subject or willing to learn. He told me that based on the information at hand, he can do “basically everything” in bed, just as long as he’s safe about it.
We talked a little bit about the rejection he’s faced from others like me, which sounds more patience-testing than soul-crushing. He bemoaned guys who “just go totally cold” and make things awkward when he reveals his status in person when he picks them up IRL (he says he always tells people in advance of meeting them if they initially connect online). “If you’re uncomfortable, fine. But communicate. It’s not the end of the world and you’re certainly not going to hurt my feelings. But it’s annoying to go through this beat-around-the-bush rejection process,” he told me.
I wondered about the other extreme: guys unafraid of having unsafe sex with him. He says he’s only experienced a “handful” of these, most of them “dedicated pigs who value raw butt sex.” Whether he would appease them depends on the dude.
Toward the end of our conversation, I apologized to Chad for brushing him off. He told me it was nothing, a blip in his life.
“If the situation presented itself again, you think the guy’s attractive and you’re still not comfortable, what do you say?” he asked, testing my apology.
I stammered and then finally: “It would depend on the level of attraction. But I don’t think I’m a firm no.”
“You’re weak now?” he asked, grinning.
There is an East vs. West Coast divide on attitudes about HIV positive guys, or so I hear from a new friend, Eddie, who I recently met through other friends. A resident of San Francisco, Eddie told me that uptightness or reluctance on this issue is something he’s only experienced on the East Coast.
“People in San Francisco especially, but on the West Coast [generally], as soon as you say you’re undetectable, it becomes like a free pass,” he explained. “‘Oh, you’re undetectable, and the risk is so minimal, and I’m a top and you’re a bottom, and that’s even less of a risk.’ I’m like, ‘I guess?’ I’m not willing to take that risk.”
He told me that when he was in the gay mecca of Provincetown, Mass., last year, he found himself in a group that was ridiculing someone they knew who was recently diagnosed. That pissed him off, and he told them as much. “On the East Coast, [contracting HIV is considered] your fault, on the West Coast, it’s, ‘That could be me, and so I understand where you’re coming from.'”
Eddie says his experiences with HIV hookups have been “80 percent positive, 20 percent negative.” He was diagnosed in 2003 and says it was “probably the hardest thing I’ve ever dealt with.” It may seem unlikely, but sex ended up being therapeutic for him:
“When I started [dating and hooking up], and it wasn’t a big deal for other people, that really helped me. It really helped me realize that I can incorporate it into my identity.”
Eddie’s own journey to comfort exposes the contradictory cultural status HIV has right now: it’s both no big deal and a huge deal. It’s no big deal because the drugs that make HIV undetectable in blood have largely converted the disease into a manageable inconvenience. For many, it is not the death sentence it was. But for others it is: drugs are expensive and the high cost means that every minute, four people die of AIDS-related illness (as related in David France’s upcoming documentary How to Survive a Plague). The drugs can also have debilitating side effects, diminishing the quality of the life they are also saving. A relaxed, non-stigmatizing attitude is a nice thing for the world but complacency with a plague that continues to rage on is not.
Eddie said he understands his risk of transmission to be incredibly low. “I’ve dated people, and we’ve had unprotected sex, and we haven’t transmitted it. But, that’s in a different context than just hooking up with somebody, because you have that conversation and you make those decisions together,” he told me.
Eddie said he feels more discriminated against than stigmatized and pointed to the number of ways gay men can be socially awful to each other. “I think there are plenty of places where the gay community hurts itself—whether it’s through race, or class, or internalized homophobia. And also with HIV status.”
All of this is great and enlightening and galvanizing, but I still wasn’t sure about the information I was receiving. I know that part of taking care of yourself as an HIV positive individual involves educating yourself, and I have faith that these guys know their shit – much more than I did, at least. But the information that all of them hold true – that hooking up with a guy who is positive but undetectable will almost never or actually never result in the infection of a negative individual – it behooves them to hold true. Because they profess to be ethical people, they wouldn’t have casual sex if they didn’t believe this.
I’m not saying they’re wrong, I’m just saying that they could be biased. They are human, after all.
Through a friend, though, I was able to connect with Bryan Kutner, a counselor who was in South Africa working with an HIV-prevention group when I reached out to him. His is a key populations specialist and a consultant with Columbia University and the Harm Reduction Coalition.
Kutner pointed me to a recent study suggesting that just because HIV is undetectable in blood doesn’t mean it is undetectable in semen. It’s one study of a small sampling of HIV-positive men (81), but it does suggest that being undetectable isn’t the “free pass” that some would like it to be, maybe. The paper raises yet another contradiction: as antiretroviral therapy has become more popular, HIV has experienced a resurgence. At the very least, we shouldn’t rest on our antiretrovirals just yet.
But what does that mean?
“You won’t get a hard answer from me on it, simply because there’s not enough science for us to know exactly the state of affairs for men who are gay or have sex with other men,” Kutner wrote me in an email. “Studies have quantified the lessened risk, but I wouldn’t generalize their findings to the lives of gay men. That said, the consensus is that undetectable viral load is a good thing, all evidence on the subject points toward lessened transmission risk, and there may be more we still don’t know but we’re just gonna recommend that low viral load has some beneficial effect on lessening HIV risk even if we can’t exactly quantify it yet among the gays and other [men who have sex with men].”
But the lack of hard facts does not mean that we must abandon reason. It does not mean that it is impossible to make educated decisions based on the scraps of knowledge that we have. Here is how Kutner broke down the choice faced by Grindr users on the poz/neg divide:
[Say] one profile says nothing about status, another says he’s negative, another says he’s positive and undetectable, etc. As a thought experiment, let’s imagine that what people say online about themselves is always true – which is a stretch to begin with, but let’s go with it for now. The guy whose viral load is undetectable might be the better choice for reducing the chance of transmission; he knows his status, he takes his meds, he has no measurable HIV in his blood. The other guys don’t say their status or they say they’re negative. The unknown status guy could have HIV but not want to say anything about it…Then there’s the negative guy. He’s either truly negative or he just thinks he’s negative; if it’s the latter, then in all likelihood his viral load is more of a transmission risk than the guy who knows his status and has undetectable viral load. Based on counseling NYC men testing for HIV, plenty of “negative” guys fuck without a condom and naively think they and the guy they just fucked is negative – so what they say about being negative is true, but it isn’t accurate since a guy’s HIV status is subject to change before he knows it has changed.
So of those three choices, the guy who’s willing to be out about his status might seem like the easier one to trust. Of course, it’s so much more complicated – who wants to think about HIV during sex when it’s hard enough to contemplate it after sex?
So, right. No firm answers to be had here, except that abstinence is the only way to stay truly safe. And abstinence, as we know, is impossible. How terrifying.
Miguel and Me, Redux
“This always happens: someone will feel bad and then they’ll see me out and they’ll be like, ‘Oh my god, you’re so fucking hot…'”
Miguel is 32 and was 21 when he was diagnosed. A former drug abuser, he told me that when he found out he had HIV, it barely fazed him. It wasn’t until he got clean that he realized the true value of himself – now he says he’s healthier than he’s ever been. He has an insanely cut-up torso to prove it.
Though he told me he isn’t angry, his words suggest otherwise. He gets visibly riled when we discuss HIV-related ignorance within the gay community.
“I’ve had people tell me, ‘I’ve ever been with anyone with HIV.'” he said. “Are you fucking kidding me? Do you live under a rock? ‘Well no one’s ever told me.’ That’s exactly it, and you never bothered to ask. So now you’re an idiot. And then they get mad and it’s like why are you getting mad at me? You’re the dumbass who’s probably going to get HIV because of your mindlessness.”
He isn’t exaggerating. Probably. Using CDC figures, I’ve calculated that 1 in 14 men who sleep with men in America has HIV. I’ve heard estimates as high as 1 in 5 in New York. The stats get fuzzy when you take into account how many guys have it but don’t know it (though there are stats for that percentage, too). In general, the hard facts are elusive. HIV is everywhere or not so much and maybe you’ll get it from someone who is undetectable or maybe you won’t and then maybe you’ll be fine after taking some meds. Maybe.
Where having HIV is concerned, you’re damned to a life of uncertainty and anxiety if you don’t, condemned to one of shoddy treatment from your gay brothers if you do. Even if I never contract HIV, it will remain a concern of mine for life. I have contracted an issue.
Miguel informs everyone of his status up front, and told me that those who don’t “are the people who create this stigma with us.” He said he has a “pretty damn active sex life,” hooking up with “a couple of guys a week.”
But “hooking up” means different things to different people. “I mainly just do what happened earlier. That’s about it,” he added.
After Miguel and I set up our brunch date earlier that day via text, he casually mentioned that he was jacking off. I thought that was hot. It inspired me to do the same and I told him. He sent me shots of his hard cock and asked me to, as well. I explained to him why I never do that (I write in public)…and then I caved. Part of it was out of obligation – I had already turned him down enough – but the bigger part of it was that it was sexually exciting, a slight risk (what if the pics leak?) to make a hot situation hotter. He sent me his ass pic as well, and we said nasty things to each other. “Shoot ur load,” he eventually directed me. “I’m going to in a bit,” I said back. He sent me video of himself ejaculating and then said, “Show me.” And so I did.
At brunch we talked about how hot that was, and how lovely our conversation was going. “I feel like this is much more intimate than a hookup,” I told him, verbalizing what I had felt back when Giovanni sat on my couch and spilled his story to me. “Me too. I would much rather do this,” said Miguel.
After we wrapped up our interview and brunch, Miguel and I stepped onto the bright Chelsea sidewalk outside of our restaurant and kissed passionately. We walked down the subway together, our arms spilling all over each other and I felt proud in the presence of this beauty and flattered that Miguel shared his knowledge and story with me.
* Except for Miguel and Bryan Kutner, the names that appear in this piece are pseudonyms.