Ehlers-Danlos Syndrome
This queen is letting nothing stop her on her path, all while dropping knowledge on a topic too often dismissed. (Illustration by Claire Maske, Skidmore College)
Thoughts /// Wellness x
Ehlers-Danlos Syndrome

Who says you can’t have an illness and still slay the runway?

With her boisterous laughter and energetic personality, it seems like Season 11 winner of “RuPaul’s Drag Race,” Yvie Oddly, has everything together. She strutted up and down the runway in crazy high heels and statement outfits, wowing the judges with her diverse looks, ranging from a dinosaur and a Japanese crime boss, to a now iconic fringe jellyfish.

But, even though she looks like the picture of health, the “Drag Race” winner is far from it. Oddly recently revealed that she has Ehlers-Danlos syndrome, a painful and incurable condition. By opening up about the impact that her illness has on her body, Oddly is breaking barriers and ending stigmas for what it’s like to live with an invisible illness.

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome is a genetic connective tissue disorder that causes faulty collagen. There are 13 different subtypes of Ehlers-Danlos syndrome, according to the Ehlers-Danlos Society. The three most common types are hypermobile, classical, and vascular.

Each type of Ehlers-Danlos syndrome can lead to joint hypermobility and dislocations, skin hyperextensibility and fragility and chronic pain and fatigue. This connective tissue disorder can also cause heart issues, such as a mitral valve prolapse and an aortic root dilation, as well as other life-threatening problems, like organ ruptures.

Oddly first revealed her diagnosis of Ehlers-Danlos syndrome on the show when she had to explain why she was hesitant to perform certain dance choreography. She stated that her knees easily dislocate, and the routine could cause damage to her body.

She went into more detail about how her diagnosis affects her in an essay she penned for Out Magazine. “Everything we do is a risk of injuring ourselves,” she said, explaining how it doesn’t take much to cause an injury when you have Ehlers-Danlos syndrome. Even sleeping wrong can mean Oddly wakes up with a dislocated shoulder.

Oddly makes walking the runway seem effortless, but in reality, what you see on screen is most of the energy she has. “Mostly, I just require a lot of rest,” she explains in her essay. “When I’m not out at a gig, I really don’t have a whole lot of energy to keep moving up and around, so I focus all my energy on crafts or projects that I can do from a sitting or lying position.”

She went on to talk about how Ehlers-Danlos syndrome impacts her career, “Every year, I lose another set of skills that came easy for me the year prior.” Oddly knows she’ll ultimately have to give up her days walking the runway because of the damage the disorder causes.

“I know eventually I’m either going to have to stop doing all of my crazy exhaustive acrobatic performances or I’m going to…I just know that I’m going to have to stop,” she said.

Ehlers-Danlos Syndrome Affects Everyone Differently

Oddly is able perform on stage and walk the runway, but no one would have known that she deals with joint dislocations, pain and fatigue on a regular basis if she didn’t open up about it.

“The Good Place” actress, Jameela Jamil, confirmed she has Ehlers-Danlos syndrome on Instagram, but otherwise, viewers would be unable to tell that she suffers from this disorder, and it is still impossible to know how it truly affects her.

For Christina Doherty, Ehlers-Danlos syndrome has been a fight for her life. Had she decided not to share the struggles that she has with the disorder on YouTube and Instagram with her thousands of followers, no one would know that she needed a G-Tube just to eat or that she needed multiple neurosurgeries to keep her body from falling apart.

For some people, Ehlers-Danlos syndrome is mild, and they can successfully pursue a career, for other people, the disorder is disabling, making it impossible to do anything but deal with the next symptom and the next doctor appointment.

No matter how much Ehlers-Danlos syndrome impacts someone’s life, it is usually invisible to those who aren’t suffering from its effects. No one can see the pain that joint hypermobility, instability and dislocations cause, and no one can see how difficult it can be just to get out of bed. Despite the fact that people are affected by this single illness in so many different ways, there’s still a stereotype of how people with chronic illnesses should look and act.

The Invisible Illness Stigma

There’s this idea that if you’re sick, you have to look a certain way, and people assume you should be in a wheelchair or that you have to be bedbound all the time. If you don’t look like the stereotypical “sick” person, people will assume that you’re faking your illness.

If you have an invisible illness like Oddly, you are probably familiar with the phrase, “But you don’t look sick.” According to the National Health Council, about 133 million people in the United States struggle with a chronic condition. Many of these conditions like rheumatoid arthritis, migraines, chronic fatigue syndrome, depression and anxiety, are hidden, but even with so many people struggling, there’s still a stigma against those with invisible illnesses.

Some people who are chronically ill can hold down a job and occasionally have a fun night out, but they’re told that this must mean their illness is in their head. Many people can’t work or even leave their house because of their illness, but they’re told that they must be faking their illness so that they can stay home and be lazy.

You might go to the doctor and be told you can’t have endometriosis because you’re not crouched over in pain at that moment, or get told that your depression is all in your head because you’re smiling and out of the house right now.

Even when you’re prescribed a disabled parking placard, if you park in a disability parking space and don’t show obvious signs of an illness or disability, then you run the risk of getting yelled at for taking the place of someone who “deserves” the spot.

No one sees the pain, fatigue and loneliness that the invisible illness and its stigma is causing. Having your health problems belittled by doctors, or worse, your friends or family members, can be isolating. You’re judged for the happy pictures that are posted online, which are then used as supposed proof for how you can’t be sick. While your quality of life deteriorates, you’re being told by those who are supposed to support you that it’s all in your head or you’re faking it.

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I know this is soooooo last week, but it FINALLY hit me that I won season 11 of @rupaulsdragrace!!! 😄😄😄 I am so eternally grateful to @rupaulofficial for seeing something in me, giving me the opportunity to show the world on her platform, and of course for allowing me to don this mantle for the next year! To the #oddballs who look up to me: Thank you for supporting my crazy journey, but now I implore you to look at me eye to eye. This is a victory for those who take risks, stray off the beaten path, and chase dreams so big that others can’t see them… 2019 just took an odd turn! 👾 👾 📸📸 courtesy of @britterst . 💇🏽‍♀️ by @offeldotter . 👀 done with @jeffreestarcosmetics #blueblood palette . . . . @vh1 @worldofwonder #yvieoddly #currentreigning #currentraging #dragrace #oddbless

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If you have a chronic or mental illness that doesn’t have obvious physical symptoms, it can be hard to get others people to take the issue seriously because if you look fine, you must feel fine. You’re made to feel like you are not worthy of being sick and your illness just can’t be real.

Yvie Oddly, Breaking the Stigma

Even the daring drag queen is affected by this stigma.

“It’s not because I’m ashamed of it,” Oddly said, when explaining to Out Magazine why she was hesitant to acknowledge her illness. “But there is this tendency of people to kind of write off or discredit invisible disability.”

Oddly knows that all of her fellow drag queens were worn-out and in pain after working hard in the competition, and because of that, she felt that she would be looked at as using her illness as an excuse if she talked about it. “I didn’t feel like bringing it up would paint me in a good way with my sisters,” she explains.

Oddly’s worries for speaking out about her illness were justified. When she sprained her ankle during the show, her injury was used as an excuse by another drag queen for why Oddly should be sent home.

There is a lot of negativity surrounding the idea of an invisible illness. There is a lot of fear and embarrassment from those who have one, and an unfortunate amount of disbelief from those who know someone with an invisible illness.

By talking about Ehlers-Danlos syndrome, Oddly is not only bringing more awareness to the connective tissue disorder, she’s starting a dialogue about what it means to be sick. Some people with an illness are able thrive in society but come home and crash hard, and others have to spend all of their energy in a day on just getting to the couch.

Just because no one can see the pain and the struggle doesn’t mean it isn’t real. Oddly can walk the runway, laugh and have fun, but she’s still in pain, and now she’s showing people that it’s possible to look healthy and still struggle with medical issues.

She may seem like a high energy person who’s always performing, but when she’s not working, she’s resting to deal with the fatigue or she’s icing her body and soaking in Epsom salt baths to ease the joint pain. Her contagious laughter and crazy outfits does not mean she’s faking her dislocations and fatigue.

There’s still a long way to go to end the stigma that comes with having an invisible illness. It is going to take a long time to make society, and those closest to us, see past a smile and realize that the pain is real. But Oddly is making invisible illnesses more visible. She is helping break that stigma with her vivacious nature and determination.

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