Queer Eye star Jonathan Van Ness has revealed for the first time that he is living with HIV in his new book, Over The Top. The 32-year-old has opened up about his positive status in a bid to reduce stigma around HIV, he says.
Despite his huge public profile on the Emmy-award winning Netflix show and his own podcast, Getting Curious, Van Ness told the New York Times he had not wanted to talk about his status till now, but had been mentally preparing himself for the book’s release and public reaction to his story.
“I’ve had nightmares every night for the past three months because I’m scared to be this vulnerable with people,” said Van Ness, who found out about his HIV status seven years ago, when he went for a test at a Planned Parenthood clinic after fainting at work.
His disclosure comes less than a week after former Welsh rugby captain Gareth Thomas announced he is HIV positive, after keeping it private for years.
The 45-year-old said he had been pressured to go public with his medical condition after a journalist contacted his family, who did not yet know.
Like Van Ness, Thomas has been praised for his candid admission and for encouraging a rise in testing and people looking for information about HIV.
Both cases raise the question of how you share an HIV positive diagnosis with those around you: do you choose to keep it private and not disclose your medical records to the world – or are you public and open in your approach?
“If you’re not willing or able to be open about your status to everyone, it’s entirely justifiable that you consider very carefully who you tell.”
Here, Two HuffPost readers share their own experiences of diagnosis.
‘My status felt tattooed on my forehead’
When Helen Jones, 40, was diagnosed with HIV in March 2004 the only person she told was her mother, who had gone with her to the clinic – they had both been under the impression it was an appointment about a pregnancy test.
“She was probably the best person it could have been,” says Jones. “She was a nurse so she was fine with it. Although when she came into the room I just said: ‘I’m going to die mum’ as Mark Fowler had just died of AIDS on Eastenders.”
From that point onward, Jones says she felt as if she had her status “tattooed on her forehead” but swore her mum to secrecy, telling no one. “Now looking back on that, it was wrong, because she needed support,” says Jones.
On World Aids Day in December 2004, Jones appeared in a TV news segment about HIV but was so worried about being identified she had her voice changed and threw away the jumper she wore afterwards.
A year and a half later, Jones decided she needed some support from people other than her mum so she started slowly telling friends and family, but the response wasn’t always positive – one part of her family stopped her seeing another family member who was dying of cancer in case she “gave him” HIV.
Now she has younger friends who she says are much more accepting, but still encounters some of the old messaging and fear-mongering from older people.
‘I was worried about people changing their behaviour around me’
George Eastwood, 20, who was diagnosed with HIV in February 2018, says he’s had similar experiences of a generational divide. “I don’t want to speak for everyone who has HIV because it is such a unique experience, but maybe people who are younger, we didn’t live through the messaging in the 1980s, so we don’t believe as many deep-rooted stigmas,” he says.
Eastwood was in his first year of university when he got his diagnosis. That same day, he told a circle of four close friends and most of the people he was living with. He also rang his mum and close family members: “I couldn’t live with that hidden away from them.”
Initially, he hesitated going further. “It took a couple of months before I decided not to keep it locked away. But even then I was worried about people changing their behaviour around me – being weird or not sharing a drink or thinking I was dirty.”
In April 2019, two months after his diagnosis, Eastwood decided to post a video on social media “going public” and explaining his HIV status. Watching public figures like Gareth Thomas do the same makes him feel good, he says.
″It sounds so silly but when I found out about Gareth Thomas, I felt proud. It’s stupid because I don’t know him, but I think it was pride that these public figures are able to come forward and make some noise about HIV – to tell people it’s not what it used to be,” he says.
“It makes me feel like we’re moving in the right direction because people in the public eye can battle stigma much more than any old person.”