“I don’t want to lie anymore.”
Those were the words Robert Gillum thought when he first disclosed to his partner, Michael, in 1994. Having spent the previous seven years in the closet about having HIV—going city to city, job to job and lover to lover across the United States—Gillum recalls that day in Minneapolis as the first time he took responsibility for his status.
To many, the idea of Gillum, both a former crack user and sex worker, pursuing unprotected intimacies at the height of the epidemic brings to mind some of the darkest fears of AIDS. It was a time before modern HIV treatment made the disease manageable, and when people who knew their positive status were so stigmatized, disenfranchised and scared, they weren’t necessarily going to share the information.
But Michael’s response to the truth was not at all what Gillum expected. “He said ‘Thank you,’” Gillum recalls. Even though Michael was HIV negative, the two men decided to get together.
Disclosure is—and has always been—one of the most difficult topics to broach among people living with HIV. It’s been more than 30 years since the start of the epidemic, yet the fear of rejection, discrimination and social isolation still keeps many HIV-positive people from speaking out about their status.
Disclosure also takes a serious hit on your attempts to find true love. Recent POZ.com surveys show that two-thirds of our readers say their sexual confidence has declined since becoming HIV positive. Nearly 70 percent report having a sexual partner outright reject them because of HIV. Perhaps because of this, nearly one in 10 of our readers still say they never disclose their HIV status before a new sexual encounter.
However, as Gillum and many others have discovered, living and loving with HIV is not an impossible feat. For this article, four HIV-positive people share their tips on disclosing and navigating the relationships that follow.
“I like helping people change,” says GILLUM, 49, who has now spent nearly two decades working in the public health field. Over the years, he has helped a lot of gay men of color disclose their HIV status—something he too once struggled with.
Gillum found out he had HIV in 1987, when he was 20 years old. At the time, he was incarcerated, facing 30 to 60 years on murder charges. He was also coming down for the first of many times from the addictions to pot, cocaine and alcohol he developed as a teen in his hometown of Gary, Indiana.
“At that moment, my spirituality stepped in,” Gillum recalls about the day of his HIV diagnosis. “I felt I was spoken to.” The charges against him were later dropped, and his denial started. For the next seven years, Gillum says, “I was not on treatment, and I was not disclosing my status at all.”
Gillum’s story brings us to step one of learning to live, love and disclose with HIV: Accept yourself. The obvious reason to do this is to bolster your own wellness. Once you accept your diagnosis, you’ll be more likely to access treatment, which will keep you healthy and help protect your partners from HIV. All of this, in turn, can influence your comfort with disclosure.
However, know that you also may have a legal obligation to disclose your status. According to the Sero Project, an advocacy group focused on HIV criminalization laws, 24 U.S. states require people who know they are HIV positive to disclose to sexual partners—that, or face aggravated assault, attempted murder or even bioterrorism charges.
The laws apply to all sexual intercourse, with or without a condom, whether the virus is transmitted, and whether you’re on treatment or not—even if your viral load is undetectable (even though recent studies show this reduces the likelihood of transmission to nearly zero).
It’s a harsh truth to accept, but Addie Baughman of New York City understands the flip side to this first step in HIV disclosure.
“I felt really violated,” recalls Baughman, when she talks about Jose, a 47-year-old man she dated eight years ago, who never disclosed his status and ended up giving her HIV when she was 60.
At first, her doctors didn’t believe a woman her age could get HIV. But then, “I’ll never forget this,” Baughman recalls, “the lady at the health department told me, ‘If this was California or New Jersey, you could press charges.’”
Baughman got educated, went public with her status, and kept up her pursuit of a vibrant love and sex life, regardless of her HIV. A year later, in 2008, Jose died of AIDS-related complications. She remembers the doctor told her that he could tell from her blood tests that she had become HIV positive from someone who had never taken medicine for the virus.
Today, she guesses the same denial and self-perpetuated stigma that Gillum faced in his early years with HIV had affected her former lover as well.
“I’d always hoped at the time we could have talked more,” says Baughman, recalling dozens of ignored phone calls, outright denials and stalking threats from Jose in the aftermath of her HIV diagnosis. “I think it could have helped us both.”
Disclosure remains a big issue among people living with HIV. In a recent survey, 64 percent of POZ readers reported always disclosing their HIV status before a new sexual encounter. However, 27 percent said they disclosed only sometimes and 9 percent said they never did.
“Self-acceptance is the key,” says Gillum when asked about how he finally made the mental and moral leap into disclosing his HIV status in 1994. “If I’m not OK with me, I can’t tell you anything but lies because I’m afraid. But if I’m OK with me, it doesn’t matter what you think.”
Gillum learned that big step in therapy, which he started attending regularly in 1994 and continued once he got clean for the last time in 1999. “Every time you tell the truth, a weight falls off. You feel free, you feel exhilarated, because all that fear traps you.”
But once you reach self-acceptance, what’s next?
When it comes to learning how to disclose HIV in your love life, step two is coming to understand that there isn’t one right way to do it. Some HIV-positive people are totally upfront about their status with potential lovers, while others prefer to wait until they get to know someone better before they disclose. In many ways, HIV disclosure (and who you ultimately decide to tell) walks the fine line between balancing honesty with your right to privacy.
Christina Rodriguez, a 24-year-old Harlem native who was born with HIV, knows her way around the dating and disclosure game pretty well by now. She told her boyfriend, Tony, about her long-term HIV status on their very first date—and blogged about it to help other HIV-positive girls in a 2014 post for Women’s Health magazine.
“I try to be upfront about it as quickly as possible, because it is something that’s such a big part of my life. It’s not me, but it is a part of me,” says Rodriguez, a recent college graduate and co-founder of SMART Youth, a sex education workshop in New York City that meets weekly to empower youth ages 13 to 22 about making smart, informed choices about sex, HIV and relationships.
Rodriguez credits her support group of high school and college-age kids (and her mom, who runs an AIDS service organization for adults called SMART University) for giving her the confidence it took to step out into her first serious relationship four years ago.
“I had a lot of anxieties, but I also really practiced and went over what I wanted to bring up,” she recalls. In fact, Rodriguez still regularly holds discussions about disclosure with her group, providing both tips for HIV-positive kids on how to talk about their status, and information to HIV-negative kids on how to be good allies.
One of the biggest things to keep in mind when disclosing your status, says Rodriguez, is to remember “we’re not in the ’80s anymore.” The stigma around HIV may remain, but effective antiretroviral treatments—which, when taken correctly, can make it virtually impossible to transmit HIV to others, not to mention condoms and pre-exposure prophylaxis (PrEP) to help protect your partner—are now widely available in this country.
Rodriguez also recommends opening up the floor to any questions after you disclose. “It’s definitely going to help this person get on your level,” she says. Her work in supplemental sex ed has proved to her how little HIV education people are receiving these days.
She suggests not getting angry at questions like: “Can HIV-positive people still have children?” or “Do you have AIDS?” or “Can I tell other people?” It’s a learning experience for everyone, and one that helps promote HIV education and defeat the played-out stigma that still remains around the virus.
Four years after disclosing her status, Rodriguez is still in a relationship with Tony, who works as a police officer and has no problem telling others that his girlfriend is living with HIV. They credit education, communication and her confidence with keeping them together.
Unfortunately, not every story about HIV disclosure has a happy ending. Even with medical advancements in the way we treat and talk about the virus today, a lot of people are still not comfortable with dating someone living with the virus. However, as Tyler Curry, senior editor for the HIV Equal Campaign, says, “Your status is not a part of your character. It’s now a matter of logistics.”
Curry came out as HIV positive online in 2012, when he was 28 years old. For the last two and a half years, he has been writing nonstop about his life with the virus on HIV Equal’s site, as well as for The Huffington Post, Instinct magazine, The Daily Grind and other news blogs. Primarily, Curry writes to fight HIV stigma, but he also offers dating advice for mostly gay, young, HIV-positive men.
Curry notes that the way he got the virus wasn’t from an openly HIV-positive guy—it was from a man who did not know his status.
“I feel like disclosure is one of the most pressing topics for HIV-positive men today,” he says when asked about why he has become an advocate, sharing dating tips in blogs and on YouTube. “It’s weird, because I was never afraid to date HIV-positive guys back when I was HIV negative.”
That brings us to our final step in learning to disclose your HIV status: figuring out how you’re going to deal with rejection. Even as the conversation about PrEP and undetectable viral loads is starting to take hold among gay men, a recent survey in Seattle, a more liberal city, revealed that 42 percent of HIV-negative men who have sex with men (MSM) said they still would only have sex with other HIV-negative men.
“Don’t waste your time on somebody who would reject you over an HIV status,” Curry laughs. “It sucks, it isn’t fair, but there’s nothing you can do about it.” Plus, he notes, HIV has helped him weed out some of the more immature, uneducated guys on his dating roster.
Curry has come under some fire for his attitude toward dating and HIV, with some arguing that as a handsome, Internet-famous, white gay man, he’s not being realistic about how hard living with HIV can be for others. He acknowledges this privilege in some of his posts, but notes that what underlies his advocacy is a message of empowerment.
At the end of the day, what matters is accepting yourself and your status, and knowing who you are regardless of HIV. “To me, confidence is sexy,” Curry says. “I feel like a lot of guys would be turned on by your willingness to just be you and own who you are.”
But it’s also about giving other people the truth they need to make an informed, trusting choice to be with you. It’s not just a way to fight back against the stigma about HIV—it’s a way to take personal responsibility for ending the epidemic.
“Since I came out, I’ve had a lots of guys tell me they wouldn’t date me, but I never feel rejected,” says Gillum, more than 20 years after that day in Minneapolis when he chose to stop lying about his HIV status. According to Gillum, “You can’t feel rejected by somebody else’s choice.”
How to reveal your HIV status
Pick a Partner
“Now I meet most people online using sites like POZ Personals. It allows you to meet all sorts of people, but I’m not in a relationship and haven’t been in one for 14 years. At this point, there is a different level of man I need to be with. I need a man who is OK with himself.”
“I’ve actually known my boyfriend since I was 13, but I never had that point where I needed to talk to him about HIV. In retrospect, we’d always been more than friends, but there’s a right time for everything, and I’m really happy I waited to tell him until I was ready.”
When to Tell
“I’m an upfront kind of guy. Throw out the damn three-day rule. A well-written text message letting them know usually works.”
“Do it earlier. You will be surprised at the response you get, because most people are just looking for honesty. Disclosing [your HIV status] simply allows both people to feel safe.”
“How much time does it take to get to know somebody? Is one date enough? Is three? It should be before sex, but I think what a person should really decide is if they think this relationship has potential to go somewhere, and then disclose.”
(read her related story, “Learning to Love Herself,” here).
Location, Location, Location
“I’ve been told in public places, and it’s not the best place to do it. You want to be comfortable. You want to be able to take a breath or go to the bathroom if you need to. And you need enough time that your partner can absorb the info and be able to ask questions.”
“Tell people at the kitchen table with your clothes on. Explain it in terms of a health issue: This is what our risk factors are, this is how you put me at risk for other things, and this is what the disease looks like for me.”
“Getting rejected is what helped me deal with rejection. Over time, I found that [disclosure] is only difficult because people don’t know a lot about HIV. But along the way, there have been some really great guys who were willing to learn about it. Hang in there.”
“Sometimes it helps to write out what you want to say first, your fantasies about how you hope it goes and questions you think they might have. Also, there might be a lot of silence, and that’s OK. I don’t think the other person should ever give an outright reaction anyway.”
“You shouldn’t even be dating if you don’t have a support group to help you through it. Tell your family and your friends, so that when rejection does happen, you know people have got your back.”
You Disclosed! Now What?
“I always tell people, ‘I’ll let you go think about it.’ If they want to go talk to somebody else about it—their friends, their therapist, their doctor—before getting back to me, that’s fine.”
“It’s really helpful to ask your HIV doctor a lot of questions. One of my partners actually came to the HIV clinic with me to learn about how to have safer sex. Because of that, I don’t feel like a leper anymore, and I feel much more knowledgeable about the virus.”