After 5 Years With HIV, Here Are 12 Things I Would Tell Someone Who Just Tested Positive
Five years with HIV isn’t a long time, but it’s longer than many HIV-positive people survived in the past. I remember being 21, barely old enough to go to a bar without a fake ID, and getting a phone call from the student clinic a week or so after getting tested: “We need you to come in.” I had just tested positive.
If I had been born 10 years earlier, my likelihood for surviving five years would have been slimmer. I got the news on September 21, 2013. The doctor put me on a daily single-pill regimen. PrEP was virtually unknown at the time; Truvada was only released as an HIV prevention drug the year prior, and no one really knew about it yet.
Five years later, PrEP has become part of the gay lexicon. We now have overwhelming proof that people with an undetectable viral load — those successfully taking antiretroviral medication — are unable to infect their sex partners. Bareback culture has exploded. Many newer, safer drugs are on the market, and more are in the pipeline. My life has taken me places I never imagined — through four cities, two relationships and more sex than I can count.
I take my pill every morning before brushing my teeth. That’s my ritual. On this anniversary, I thought about what I would tell someone who just tested positive. Here’s what I’d say:
1. HIV will become part of your identity.
Many positive people feel “tainted” and “ruined” in the months after they’ve just tested positive. A friend took several showers a day after he got the news because he “didn’t feel clean.” That will change.
You will stop feeling like something has invaded your body. You will find a routine and tell some close friends. It may take a while, but HIV will become part of your identity — something worth defending and taking care of. Something you can’t apologize for.
For me this process meant learning about the history of the AIDS movement and the people-turned-activists who fought and died to get the government’s attention. They did it to save themselves, their lovers and their friends. I talked to long-term survivors, many who lost everyone. I had to own that struggle and place myself on a timeline that is filled with pain and loss. I will live a long life because of their great work. I must honor them.
2. HIV will help you discover what you like sexually.
HIV helped me explore my kinks. The leather community was among the first to mobilize against AIDS. In the early ’80s the leather community was a tight-knit, underground network of gay men into some extreme kinks and fetishes. They routinely talked about sex, the messy particulars of the body and safety and protocol for keeping each other safe. Who better to take on AIDS? When their friends started dying, they acted.
I had some idea of what I wanted to explore before I tested positive but had never taken the steps to make those experiences happen. I had never asked anyone to tie me up or fist me or hurt me. After getting HIV, the people who were most welcoming — even before I started medication — were kinky leather people. I found a home with them.
3. You don’t have to teach every hookup about HIV.
Sometimes you just want to get laid. That’s OK. Yes, you have to disclose your HIV status before sex, and if it’s possible, you need to get proof that you did. But that’s all you have to do. You don’t have to give each hookup a full sex-ed tutorial. They should be responsible and educate themselves about HIV before having sex with strangers.
If you’re a man who has sex with men or a trans woman who has sex with men, you have a high risk of getting HIV. That’s simply a fact. It’s therefore irresponsible to be sexually active without doing some self-education.
4. It’s not your job to convince anyone that you’re not “dangerous.”
If someone is scared of your HIV status, there’s nothing you can say or do. No articles you send them or information you can provide them will make them feel differently. They are terrified of that word, and that’s it.
There are people who think HIV-positive people — people like us — are dangerous, sex-addicted miscreants who enjoy deceiving and infecting their sex partners. That’s a far cry from the truth, as most infections happen when someone doesn’t know they have HIV. There have been just enough real-life cases of people willfully spreading HIV to generate the widespread myth that we all do that. It’s not your job to tell them all this. Give up and move on to the next person.
In my first year after I tested positive I’d send people links to HIV information sites in order to show them I’m not “dangerous.” I don’t do that anymore; in fact, I do the opposite. On gay apps I tell anyone who’s afraid of my status to please block me. Poz-phobia is the biggest turn-off.
5. In time, other positive people will reach out. Talk to them.
I have walked out of a movie to talk to someone. I’ve told my boss that I have to step out and take an important phone call. You will get messages from people who just tested positive and want to talk, especially if you’re somewhat open about your status. When that happens, take time to talk to them. You were there once. They need you.
6. There’s always someone willing to help you. Find us.
I tested positive in a small town in the Deep South. Georgia is a fiercely conservative state, and it also boasts an alarming HIV infection rate, a fact that is consistent across the Bible Belt. You’ll find that HIV spreads more easily in sex-negative, conservative parts of the world. That’s why talking about sex keeps people safer and more informed.
In the small town where I was, few people talked about sex. But I found some who would. There is a network of community care providers, support groups and hotlines you can call. If you can hop on a bus or get in a car, every major city has an LGBT center. If the nearest one is too far, reach out to people like me online. You’re never alone.
7. Some extremely sexy people have HIV.
You can’t tell who has HIV by looking at them. I hope someone has told you that much. If you start your meds and take them regularly, you won’t get AIDS. You’ll just be HIV-positive, and if you take your meds diligently, you’ll be undetectable, which means you won’t be able to infect your sex partners, regardless of whether you use a condom or not.
Some of the sexiest gay men I know are HIV-positive. It won’t affect how you look as long as you take your meds.
8. Going public with your HIV status will impact others.
It’s not mandatory to do so, but if you do go public, someone — or, more likely, many people — will thank you.
In the beginning, I said I would never tell my family. I’ve had a rocky relationship with my parents for most of my life. But one day I had the opportunity to write for a major magazine, and I was asked to write about my HIV. Doing that would mean telling my parents — they’d find out anyway when I published the piece. That was a difficult phone call home, but it was the right thing to do.
Since then I have received messages from HIV-positive people all over the world. Being part of a public, global community and talking openly about HIV is the most powerful way to fight stigma, and it will help others who feel alone. If you find yourself in a safe enough place in your life where you feel able to do so, think about it.
9. HIV will make you question what you want from sex.
Everyone should critique their sex lives at least once. After I tested positive with HIV, I realized that I wanted to experiment more, and that I didn’t really like condoms. And I realized I wanted more sex — much more than I was having before.
All the shame and reservation I felt about sex needed to go, and the only way to do that was to get practice. The practice became a priority — sex took precedence over other parts of my life that didn’t make me happy. It was a change for the better.
10. If you want to find HIV-friendly playmates, look to the bareback community.
Not every HIV-positive gay or bi man prefers bareback sex, but I do. The reason why I found such a welcoming home among barebackers is because these men were the most welcoming of status — and because I’m not a huge fan of condoms.
Bareback culture is a celebration of the extreme intimacy of sex without barriers. We play with the principle of shared risk and shared responsibility. Everyone who attends a bareback sex party, for example, assumes some risk that they’ll catch an STI. While we do our best to keep our sex partners informed and stay on top of our health with frequent testing, we know that bareback sex is nevertheless a high-risk sexual activity. We don’t blame or attack our partners when we catch an STI, because we had sex willingly, were aware of the risks and take responsibility for our choices.
Yes, you will always have to disclose your status before sex, and this means you will face rejection from people. But I can say I’ve never been rejected by a barebacker because of my HIV. The bareback community contains some of the most beautiful, welcoming, sex-positive men I know.
11. HIV will make you a political agent, whether you like it or not.
HIV has always been politicized. Ronald Reagan willfully ignored the AIDS crisis and did nothing while thousands of gay men died. In response, we became grassroots activists in what will go down in history as a great citizen’s battle. The government has a history of cruelty and disservice to HIV-positive people, and that trend has continued and worsened under Donald Trump.
We will continue to debate the ethics of chemically regulating the sick with very costly drugs. HIV criminalization laws shoulder us with the responsibility of keeping our partners safe and criminalize us when they test positive. We are required to disclose our status before every sexual encounter because not doing so is a felony in many parts of the country. These laws treat HIV as a weapon and contribute to the social fear and stigma of HIV.
White male privilege, a reliable support network, and other factors gave me a leg up in a racist country that leaves others — particularly people of color — with fewer advantages, less access to health care, and less support. HIV statistics reflect this disparity: The CDC estimates that half of all men of color who have sex with men and trans women of color will test positive in their lifetimes.
I chose to take up the torch that previous generations of positive people pass on to me. There is so much more work to do.
12. HIV does not define you.
It’s something in your blood. That’s it. Yes, HIV will become part of your identity, but there’s so much more to you — and so much more to everyone — than something in their blood. Find people who see all of you — your interests and talents and kinks, your favorite movie and favorite dessert, and your HIV status — and take it all. They’re out there.
What would you say to someone who just tested positive?
Featured image of Alexander Cheves courtesy of the author