Since winning season 11 of “RuPaul’s Drag Race” in May, queen Yvie Oddly gets a lot of public attention. In a new interview, Oddly clarified that she sets boundaries on her interactions with people in public to take care of herself and manage her Ehlers-Danlos syndrome symptoms.
Oddly first revealed she has hypermobile Ehlers-Danlos syndrome (EDS) during her run on “Drag Race” when she expressed concern that a dance routine would cause her joints to dislocate. EDS, an inherited connective tissue disorder, can cause joint dislocations and overly flexible joints that are very painful.
“I’m just a little worried about hitting my knees ’cause they come out of place a lot,” Oddly said on the show. “It’s part of my disease I’ve got, girl. All of my s–t pops out.”
In July, the queen tweeted about why she doesn’t want to take pictures with fans after public events, using a chef metaphor to describe what will sound familiar to spoonies who used up all their energy for the day. Oddly tweeted:
Imagine that you just spent a long day on your feet cooking for people who pay you because they appreciate how your food tastes. Now imagine that you walk out of the restaurant and are met by a mob of people who love your food and ask you to cook for them…for free…and without any ingredients because you just used them all…. This is why I refuse to take pictures after I finish a show. Don’t be selfish.
Now imagine that you walk out of the restaurant and are met by a mob of people who love your food and ask you to cook for them…for free…and without any ingredients because you just used them all….
— Yvie Oddly (@OddlyYvie) July 21, 2019
Oddly’s comments were met with backlash online but she pointed out it’s important for her to set limits on her energy, especially after a long day of work, to help manage her EDS symptoms. She asked fans to respect her boundaries and pointed out how comments from people online with pithy phrase like “she’s tired” or “her joints hurt, alright?” can be seen as disrespectful to the chronic illness community.
“A fan earlier commented on a picture of me doing the splits with ‘still hurting, babe?’ Which came off to me as mocking my chronic illness, but I want to give a better example,” Oddly tweeted with the image of a headline and an excerpt from a news article. “Major publication here putting my condition out here like this. Now imagine the other kinds of comments.”
A fan earlier commented on a picture of me doing the splits with “still hurting, babe?” Which came off to me as mocking my chronic illness, but I want to give a better example- major publication here putting my condition out here like this. Now imagine the other kinds of comments pic.twitter.com/SaRV1FCMxy
— Yvie Oddly (@OddlyYvie) August 19, 2019
On Friday, Oddly shared with People in a new interview that her EDS diagnosis makes the rigors of performing and public life even more difficult and painful. Oddly said major appearances really take a toll 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 said. “[EDS] makes for all these really cool contortions, and I like to use that to wow people, afterward, I feel like a zombie.”
Now Oddly is working on her self-care and balancing that with the “pressure” to perform. For Oddly, that means setting boundaries on how she interacts with others in public to manage her energy and prioritize her wellness.
“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 told People, adding:
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. 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.
If you struggle with setting boundaries, check out these Mighty articles from fellow chronic illness warriors that may help:
- How to Create Boundaries When You’re Chronically Ill
- 4 Essential Limitations to Set When You’re Chronically Ill
- 4 Ways I Practice Self-Care Living With a Chronic Illness
- It’s OK to Say ‘No’ and Set Boundaries When You’re Sick