HIV Aids

Many Folks Who Finally Disclose Their HIV Status Discover New Freedom

For Bryan Jones of Cleveland, Ohio, everything changed when he told his mother.

Now 61 and a prominent advocate fighting to get his state repeal its law criminalizing people with HIV for not disclosing their status before sex, Jones had been living with HIV in utter secrecy since his 1984 diagnosis. Then, one day in 1999, his mother called to say that a letter from Social Security had come for him. She asked whether he wanted her to open it and read it to him. He said that he did.

The letter said that his disability benefits claim had been denied—despite his AIDS diagnosis.

“She didn’t stumble or gasp,” Jones recalls. “Like the strong Black woman she is, she just said, ‘Do you want me to tell anyone else about your diagnosis?’ I said no, and we moved on.”

Later, he would find out that his mother went to a support group for help processing the news. But, he says, the mere fact that someone now knew that he was living with HIV—no mere someone, in fact, but his own mother—changed everything for him.

“I’d felt like Anne Frank hiding in the attic, but after that, I knew I’d be all right,” he says. Later on, when a family member leaked the news out to the broader community, Jones says, “I’d greet people by saying, ‘Yes, what you heard is true, I have AIDS—now, have you been tested?’ That’d leave them with their mouths wide open,” he laughs. “But I took back my power—and my life.”

Since then, Jones has become one of the most outspoken Clevelanders living with HIV—and an ambassador of the global U=U (undetectable=untransmittable) movement, in which people living with HIV help spread the word, backed by science, that folks on suppressive HIV treatment are unable to transmit the virus to sexual partners.

But it all started with that disclosure to his mother. Which is why he fully applauded Billy Porter, the Black gay actor who plays the HIV-positive Pray Tell on the TV show Pose, when Porter revealed to The Hollywood Reporter earlier this year that he had been living with HIV since 2007—and was finally ready to share that with the public.

The shame Porter felt at his diagnosis “silenced me, and I have lived with that shame in silence for 14 years,” he told the Reporter, before going on to say: “But the truth shall set you free. I feel my heart releasing. It had felt like a hand was holding my heart clenched for years — for years — and it’s all gone.”

Porter’s public HIV disclosure may have happened three months ago, but its impact in the community will be long-lasting. Here’s a look at how some people reacted and related to the most recent major public figure to come out about his HIV status.

[Related: Billy Porter’s HIV Disclosure Speaks to How We Process—and Reject—Shame]

The HIV Community Response to Billy Porter’s Disclosure

On Facebook group pages for people living with HIV, some folks initially greeted Porter’s revelation with cynicism. “Getting infected in 2007 was not the same as getting infected in 1987,” one commenter wrote on a group page for HIV long-term survivors. “Being closeted about it, that late in the game and a decade after the protease inhibitors seems pretty small ball to me.” Another wrote: “When one had a personal trainer, chef and resources, this is a slap in the face of those without the same resources…I love Billy but this is really myopic.”

But such takes were the outliers. For the most part, it seems that people living with HIV appreciated Porter’s disclosure. And Jones is among them.

“Even though he’s a public figure, he’s human just like all of us,” Jones says. “I don’t care how much money or status you have—having HIV makes us all confront the same questions, such as: Will we be accepted? Actors struggle with self-esteem, too; [Porter] still had his own demons and things he had to deal with. I can’t judge his journey.”

Above all, it seems, many folks relate to the liberation Porter is likely feeling after years of keeping his diagnosis a secret. As someone diagnosed with HIV in 2001, I know I certainly can.

For years, I only told certain family or friends, despite writing about HIV for a living since my mid-20s. But in 2016, upon the publication of my AIDS-themed novel Christodora, I opened up fully about my HIV status in essays, interviews, and on social media. Doing that allowed me to feel assured that few in my life would remain ignorant of my status, while sparing me the trouble of having to tell many people one-on-one. I’d never been entirely sure of the point of doing that anyway, given that I was privileged to receive my diagnosis well into the age of highly effective and fairly easy treatment. Still, I felt a weight off my back—I had nothing to hide!

That’s a feeling shared by Xio Mora Lopez in New Jersey, who was diagnosed with HIV in 1994 after getting a needle-stick as a health care worker. For 22 years, she barely told anyone save her mother, brother, and daughter. But on World AIDS Day 2016 in New York City, right after Donald Trump was elected President, she decided to participate in an open-mic event for people living with HIV/AIDS.

On the way there with her daughter, “I was terrified,” she recalls, “shaking in my shoes.” When her turn came, she stepped up to the dais before a crowd of about 100 people living with HIV and their friends, lovers, and allies. “I didn’t know if my story would resonate with anyone,” she remembers. “My voice was shaking. But when I finished reading and looked up, people were standing, applauding, crying. Then I started getting hugs. And that 22-year boulder on my shoulders disappeared.”

[Related: Why It Still Matters When Celebrities Disclose Their HIV Status]

HIV Disclosure Often Doesn’t Turn Out How We Expect—But It Can Give Us More Control

Of course, all this is not to say that HIV disclosures always goes exactly as planned.

I was not prepared for how upset and alarmed certain people would be when I told them I was living with HIV. As a longtime HIV expert, I didn’t see my diagnosis—which happened in 2001, five years after highly effective treatment became available—as a precursor to sickness and death. I realized that I needed to give some people time to come to the same realization. But I’ll admit that their immediate fright and dismay was not the reaction I’d been hoping for.

In Toronto, filmmaker Craig Thompson, 58, had the opposite experience—he felt folks’ response to his disclosure was, well, not dramatic enough.

He’d spent a decade keeping his diagnosis under wraps. “The undisclosed years were isolating,” he says. “Life seemed to flatten. It was like COVID, but [I was going through it] alone…One on hand, I’d never felt it was anybody’s business besides my partner’s. On the other hand, I saw the stupid stigma and discrimination people living with the disease still had to face—and I wondered if [it] would only stop when more people living with the disease came forward.”

Then last year, he made two short films and used them as a vehicle to disclose to his family. “They loved it, but we’ve never really spoken about my HIV since, which I both appreciate and resent,” he says. Beyond his own family, “people were surprised—but much of it felt like a shrug.” He admits, though, that “it has opened up some frank conversations around sexuality that we hadn’t typically shared, and has felt like it’s released burdens others were carrying too.”

A more wholly joyous disclosure experience was had by Danny Caroll, 32, a script coordinator in Los Angeles. He told only four friends the first three years after he was diagnosed in 2011. Then his mom discovered his meds.

“She reacted with sadness and disappointment,” he says, “but it was her idea for me to tell the rest of the family right away, and everyone embraced me with love and acceptance.” Then in 2016, he came out publicly on World AIDS Day in an essay he wrote for Chosen Magazine.

“My life completely changed when I opened up about my status,” he says. “Before, it would always haunt my thoughts, make me feel like a fraud. I was tired of holding my tongue when HIV came up, since I felt like my lived experience could always help clarify some things, if only I had the guts.”

Another happy story comes from David Kelly, also of Los Angeles, who was diagnosed in 2006—just a year before Porter. “I felt a lot of the shame he talked about, because I felt I was part of the ‘should’ve known better’ generation.” But once he went so far as to disclose his HIV status on billboards all over the city, “it was so liberating,” he says. “I think Pose gave Porter a similar opportunity to unburden himself. God bless him for adding his voice to the conversation.”

[Related: [From Pilot to Finale, ‘Pose’ Lived for Our Community]

Disclosure Doesn’t Guarantee Happiness or Safety—But It Can Still Be Worth It

Again, none of this is to say that disclosure won’t sometimes have negative outcomes. “Sadly, I told my mother at the start, and she told everyone she could,” Jason from Australia, who preferred not to share his surname, told TheBody. “I was ostracized from my hometown and my siblings have never spoken to me since. My grandmother once said to me, ‘I knew that you would get it.’ There’s something to be said for keeping information to yourself until you know you are safe, because I’ve been without family or old friends for close to 21 years now.”

And Jones recalls the time he spoke about his HIV status at Cleveland State University—and was then hit over the head with a tire-iron, requiring medical staples. He thinks the attack was a brutal retaliation for sharing his truth on the campus. His mother’s car was also set on fire one night shortly after he disclosed to someone he was dating. “We hadn’t even held hands yet,” he says.

Yet despite those incidents, he says it was still worth going public. “I stopped making other people’s shit my shit,” he says. “I’d taken on the burden of wanting to protect everyone [from his HIV diagnosis], but who was going to protect me?”

I agree with Jones that once we folks with HIV “come out,” it’s hard to go back in the viral closet—something that Porter himself may be realizing as he finally lives free of the stress of trying to keep his status a secret from the world at large.

Don’t get me wrong: I strongly believe that people should only come out if, or when and where, they feel confident and safe about doing so. And I’m wholeheartedly against shaming or judging anyone for keeping it to themselves, or for telling only a small, trusted circle of family and/or friends and never “going public.” (As long as they are not out there publicly stigmatizing or discriminating against people living with HIV, that is.)

But I also strongly affirm that there’s no better feeling than knowing that your own HIV disclosure makes it easy for others to do so—or helps to dispel myths about people with HIV that are often still held among folks who don’t live with it. To the extent that Billy Porter is doing that, showing people what a healthy and thriving life with HIV in 2021 looks like, I’m 100% on board. Let’s share our stories.

As Mora-Lopez says: “I’m not shutting up about this ever again!”

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