Drag Race Winner Yvie Oddly Says Rare Tissue Disease Makes It Difficult to Greet Fans After a Show

When Yvie Oddly finishes a drag performance, she often feels like she has “nothing left.”

The reigning winner of RuPaul’s Drag Race spoke candidly on the show of having Hypermobility Ehlers Danlos Syndrome, or HEDS, a rare tissue disorder where her body doesn’t make enough collagen, a protein that helps joints work. It causes chronic pain and makes it easier for joints to dislocate — sometimes affecting her ability to perform, like when she sprained her ankle during a dance challenge on the show.

Yet last month, when Oddly, 26, tweeted asking fans not to ask for photos after shows, she experienced backlash. She tweeted out a clarification later, writing, “Just as the queens have the responsibility to respect their fans, the fans have the responsibility to respect the queens’ boundaries, simple as that.”

“First and foremost, I’m a human being, and second, I’m struggling very hard with a disease that makes it very difficult for me to do the things that I love,” Oddly explains to PEOPLE. “At the end of a 2 1/2 hour show, when I’m throwing my body on the ground for you and it doesn’t feel good in the first place — after I take off all of my makeup, I don’t want a trite fan interaction like a photo.”

Adds the performer, “If you want to talk to me, if you want a hug, those things are way more human. They take as much energy as a photo does, but at least one of them is real and is not going to leave me feeling empty emotionally as well as physically.”

Oddly has performed nonstop since winning Drag Race. She’s preparing for the latest leg of the “Werq the World Tour,” featuring other Drag Race queens including past winners Aquaria and Violet Chachki — and she knows the toll it will take on her body.

“I spend hours in the same uncomfortable pads, tights, heels that are too high that many drag queens do, but on top of that my bones are constantly grinding against each other,” Oddly says. And although HEDS “makes for all these really cool contortions, and I like to use that to wow people, afterward, I feel like a zombie.”

On Drag Race, and even after, Oddly says she felt “pressure” as a performer to earn her title. But now, says the queen, “I’m reminding myself, I have no job to prove anyone anything as much as to celebrate all of the things I enjoy that got me here in the first place.”

That celebration will also take the form of a new series about thrift shopping and costumes, Yvie Oddly’s Oddities, premiering next week on streaming service WOW Presents Plus. “It’s a little exercise in looking at what you have available around you to turn into something else,” Oddly says. “Drag is all about the power of transformation.”

To her, that’s not just physical and aesthetic transformation, but something bigger — whether she’s competing on TV, performing a show or starring in a series.

“I remember being a teenage boy who was inspired by drag queens to start trying to live the life that I wanted to live,” Oddly says. “If I’m going to be a public figure, I’m going to do it under my terms: fighting for the things that make me happy.”

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