Finding Freedom After U=U

“In the quiet darkness, in the stillness of the night, I was waking up in a cold sweat,” Rob “Rocket”says of his 2005 HIV-positive diagnosis. “I thought, This could kill me. I could end up another panel in the quilt.”

Arnegard, 47, a sex and kink educator, adult entertainer and escort, was living in Dallas–Fort Worth, at the time. During a routine checkup for sexually transmitted infections (STIs), he tested positive for HIV. “It wasn’t a surprise. I’d been in a turbulent relationship that had broken up only a few weeks before all this came out. Through the course of conversation with my ex, it came out that he was ill.” Arnegard says his partner was in denial about his own health and HIV status. “It came out that he was dying,” Arnegard says, “he died in denial.”

Rob Arnegard

Although Arnegard had also lost several friends to AIDS, he’d also witnessed the miracles of protease inhibitors and the drug cocktails that had come out in 1996. “I had friends who were being saved by [the new medications]; lives were being saved,” he says. “Still, the terror of the diagnosis was still there.”

He traces his fear back to the AIDS crisis of the early ’80s and ’90s, when HIV stigma was so prevalent. He remembers being told not to hug or kiss people with AIDS or even come in contact with their sweat. “It was all over the media,” Arnegard says. “Even the [medical drama] television show ER didn’t do a good job of HIV and AIDS stories with health care professionals as characters!”

Arnegard fell into a deep depression after his diagnosis, gaining 50 pounds. “I think I was convinced, maybe subconsciously, that the more weight I gained, the harder it would be [for HIV] to kill me,” he says. “I became a big old bear. Now, I’m not throwing shade. I love me some bears! I want that on the record,” Arnegard clarifies, “but for me and my body, it wasn’t healthy.”

Lucky for him, he had a great circle of friends who rallied around him for support. “It was dragging me down both emotionally and physically, and my friends really helped me get a grip on that,” Arnegard recalls.

A few months after being diagnosed, Arnegard went on his first HIV cocktail. “Ever since then, I’ve never had a detectable viral load,” he says. Undetectable Equals Untransmittable (U=U)—the scientific fact and slogan communicating that a person living with HIV with an undetectable viral load cannot transmit the virus—was not yet mainstream, but Arnegard’s “high school biology understanding of virology” led him to his own theory of U=U. “I always thought, If you don’t have a detectable viral load, what can you transmit?”

Near the end of 2005, Arnegard relocated to Flagstaff, Arizona, and set aside his “adult” work. “The reason I put my sex work aside is that I felt that HIV ended my career, ended my ability to work in that regard,” he says. Arnegard explains that even though in most of his BDSM work he didn’t penetrate with his penis, he just didn’t think he could continue. “I didn’t feel like it was ethical at that stage,” he says. In his personal life, Arnegard also serosorted his dates, seeing only partners who were also living with HIV.

In 2007, friends convinced Arnegard that he could also date people who weren’t living with HIV. “We promise they’re going to be cool,” they told him. Around this time, a friend emailed him an article. The article was about U=U. “I read the article, and then I reread the article a couple of days later,” Arnegard recalls.

Here was an article that explained U=U, the studies that backed up the science and the freedom people living with HIV on effective treatment could experience. Arnegard took the article to his doctor. “I said, OK, the buck stops with you. And he goes, ‘Oh, I’m glad you brought that up. We are now going to move you guys into a new status called U=U.’”

“And I said, ‘Does this mean somebody could give me oral sex?’” Arnegard’s doctor not only gave him the good news that, yes, this was now safe to do, but he also gave him back a huge part of his life he thought was long and forever gone. “He was telling me that I could have raw sexual intimacy again, without barriers and the necessity of safety first at the forefront of my mind,” Arnegard says.

It was some months before Arnegard was comfortable enough with U=U to practice it in his own dating life. A couple of years later, he reconnected with Mark, who is HIV negative and now his husband. “For the first five years of our relationship, we still practiced safer sex,” Arnegard says. Years, later, once the science and the U=U message became mainstream, Arnegard and his husband ditched the condoms, and they haven’t looked back.

“U=U has had a great effect, but it’s taken me time,” Arnegard says. And he has once again embraced BDSM and kink, with encouragement from Mark. Arnegard has not only started working as escort and an educator again, but he also hosts The Rocket Review podcast. “I now split my time between Flagstaff and Palm Springs,” he says, “depending on where I’m needed.” He understands that if not for U=U, he might not now be enjoying this sexual freedom.

“I was only diagnosed with HIV because I was pregnant,” said Brooke Davidoff, 43. “That’s the only time they test straight women, apparently,” says the poet, blogger and advocate from Kansas City. She was living in Seattle when she got the news in February 2010. She was two months pregnant. She hadn’t been tested for HIV before because heterosexual cisgender women are considered low risk.

Her then husband tested negative, and Davidoff had to contact her former sexual partners. “The Centers for Disease Control and Prevention [CDC] never followed up with me, like they did for my gay male friends. I had to write a generic email and send it to exes via Facebook and MySpace. I didn’t know where I got it, but I got it from somewhere,” she says. Eventually, an ex-boyfriend’s ex-wife contacted her. She emailed Davidoff saying she had HIV. “And that’s how I found out where I got it from,” she says.

Brooke Davidoff

Encouraged by her ob/gyn at the University of Washington, within months of her diagnosis, Davidoff was blogging about her experiences for TheBody.com. At the time, Davidoff felt that, as a straight woman who knew nothing about HIV, she wasn’t qualified to write about it. “All I knew was Pedro Zamora and The Real World. I cried so bad when he died. He was amazing,” she recalls, “but I didn’t have the voice to really represent because I didn’t know anything.”

But her journalism background combined with her desire to share her truth, made Davidoff a perfect advocate. As she navigated the medical system, she blogged about it to help others. “Medical jargon turns people off, and doctors dismiss you. Doctors treat you like you deserve to be in that room and the stigma and all of that,” she says. “That’s the only place I ever felt that stigma—in a doctor’s office. I never felt that from a friend.”

However, her husband was a different story. “My husband was afraid of me once he learned he didn’t have HIV,” she says. They separated in July 2017. Fortunately, her son was not born with HIV.

Like so many with HIV, even today, Davidoff at first felt that her diagnosis was a death sentence. “My CD4 count was 136, so my first infectious disease doctor was like, ‘No, you don’t have HIV; you have AIDS.’ And I was like, ‘What? I’m not even sick!’” She went home and did some online research and found a community of people living with HIV, many of whom were longtime survivors. “Watching people who have gone through this for years and years and years was inspirational and educational to me,” she says.

The same ob/gyn who encouraged her to blog also told her about the science of U=U. “She was the one who explained that if you take your meds and keep an undetectable viral load, then you’re untransmittable,” Davidoff says. “How do you forget that? It’s a slogan that’s so easy to remember, and it says everything you need to know about staying on your regimen.”

Davidoff has been with her current boyfriend since November 2021. “I believe that U=U is part of why I was able to find love again,” she says. “Open medical discussions are a big part of our relationship. He asked questions about HIV and U=U before we began seeing each other. I think it helped him to not be afraid of dating me.”

Davidoff remains active online as a member of the Positive Women’s Network–USA. She’s also a member of the Community Action Group of the American Academy of HIV Medicine and an administrator on the online chat show Pillow Talk with Deirdre Speaks. She was also selected for a spring 2023 education and advocacy fellowship at Planned Parenthood of the Great Plains.

Davidoff is dedicated to educating people about HIV and the current medical treatments that keep her undetectable, untransmittable and healthy. “Straight people who don’t know that HIV affects straight people are still in the dark,” she says. “But I figure, silence equals death, right?”

Davidoff is on a mission to make sure that along with minority groups, men who have sex with men, and transgender people, straight cis women are included in HIV messaging, so that the message is that everyone is at risk. “If someone sees a public service announcement about HIV and they don’t see themselves represented, they’re probably not going to pay as much attention, right? [Advertisers] are missing all that time when you could have more people saying, ‘Oh my God. Me too.’”