I Was a Ballet Dancer with Ehlers Danlos — Before I Knew What It Was

May is Ehlers Danlos Syndrome Awareness Month, which means it’s also the time of year when I reflect on the strange and complicated relationship I have with my body... especially the body I had growing up.

I spent my childhood and teenage years immersed in ballet, completely absorbed in that world of mirrors and music and muscle memory. I don’t remember ever asking myself whether I loved ballet, it was just part of me. It felt inevitable, like gravity. I was a dancer. That’s what I knew.

What I didn’t know, what nobody knew, was that I was also living with a connective tissue disorder called Ehlers Danlos Syndrome (EDS). Nobody called it that when I was a child. Nobody talked about chronic illness. We talked about effort, about talent, about injury, about discipline. But EDS doesn’t look like an acute injury. It doesn’t show up on an X-ray. It doesn’t come with a dramatic fall or a cast that earns you sympathy and rest. It’s subtler and more insidious than that. It hides behind hypermobility and fatigue and pain that comes and goes, until it doesn’t go.

In ballet, I was praised constantly for my flexibility. I could sink into the deepest pliés, kick my leg sky-high, and melt into stretches that made my teachers smile. “You’re so lucky,” they said. “You’re a natural.” At the time, I believed them. I felt special, even chosen. But looking back now, I know that what they called natural was actually pathological. That kind of flexibility, the kind where your joints exceed their normal range because the collagen holding them together is faulty, isn’t a gift. It’s a warning sign. And because no one recognised it for what it was, I was pushed to do more. Go further. Stretch deeper. Make it look easy. Don’t let them see you struggle.

There’s a culture in ballet that worships suffering in silence. We don’t call it that, of course. We call it dedication. Commitment. Passion. But the message is clear: pain is proof that you’re trying hard enough. If something hurts, you’re supposed to push through it. Smile through it. Make it look beautiful. I don’t think I ever heard a teacher say, “Stop if it hurts.” The closest we got was, “Work around it.”

So I did. When my knees started aching, I added extra warmups. When they swelled after rehearsals, I iced them in secret. When they popped out of place, not fully, just enough to catch and burn, I’d sit out for five minutes, then get back up and pretend nothing happened. I didn’t know that other people’s knees didn’t do that. I assumed it was just another part of being a dancer. And in some ways, it was. I wasn’t the only one who hurt. The difference is that I hurt all the time, even when I hadn’t done anything yet.

As I got older, the pain got louder. It stopped waiting for rehearsals to show up. It lingered between classes, followed me home, curled into bed with me at night. But by then, I was used to dismissing it. I thought I was being weak. I thought maybe I just wasn’t strong enough, that I wasn’t training hard enough, that I needed to stretch more. It never occurred to me that I might have a medical condition. It didn’t occur to anyone else, either. When I eventually left ballet, it wasn’t in a blaze of rebellion or even a conscious choice. My body just stopped cooperating. I was having more subluxations, more swelling, more fatigue, more pain that I couldn’t dance through anymore. I faded quietly out of that world, still convinced I had failed at something important.

It took years after I stopped dancing to get a diagnosis. And even then, it didn’t come easily. Doctors dismissed me, told me I was anxious, deconditioned, dramatic. It wasn’t until I landed in the office of a specialist who looked at my history, tested my joints, and said the words “Ehlers-Danlos Syndrome” that the pieces started to fit together. Suddenly all the things that had never made sense, the constant pain, the injuries that didn’t heal, the way my joints moved too much and then not enough, had a name. It was both a relief and a grief. I had an answer, but I also had a long list of things that could’ve gone differently if I’d known earlier.

And ballet is high on that list. I don’t know what it would’ve looked like to dance with accommodations, maybe a brace, maybe fewer hours, maybe just someone to say, “It’s okay to stop.” I wonder who I would’ve been if I hadn’t learned so early to ignore my own limits. I wonder how much damage could’ve been avoided. I live with arthritis in my knees now. I’m in my early twenties and already navigating mobility aids and pain management. And I can’t help but think about the hours I spent kneeling on wooden floors, the years I spent forcing turnout from hips that weren’t meant to turn out that far. I gave so much to ballet. I gave parts of my body I didn’t know I’d need later.

But here’s the thing: I also got something from it. That’s the part I wrestle with. Ballet didn’t just hurt me, it shaped me. It gave me a sense of control in a body that felt unpredictable. It taught me how to read the subtlest signals from my joints and muscles. It gave me a vocabulary for movement and stillness. It taught me how to carry myself, even now, even with braces and fatigue and everything else that’s changed. And there’s a kind of grief in that too, not just for what I lost, but for what I loved. I still miss dancing. I miss the music, the ritual of warming up, the feeling of being entirely inside a movement. I don’t think that will ever go away.

Now, when I move, it’s different. It has to be. Everything is slower, more considered. I don’t chase flexibility anymore, I chase stability. I don’t push past pain, I listen to it. I treat my knees like precious things, because they are. I’ve learned that rest is a form of respect, not weakness. That accommodations aren’t cheating. That it’s okay to mourn the dancer I was and still love the person I’ve become.

I’m writing this for EDS Awareness Month because I know I’m not alone in this story. So many of us grew up performing health, performing effort, performing okay-ness for the adults around us. We were the “good kids,” the “hard workers,” the “talented ones.” We were praised for our discipline, even when that discipline was breaking us. We were told to keep going, to not make a fuss, to take pride in pushing through. And when our bodies couldn’t keep up anymore, we felt like failures, when really, we were survivors.

If you’re living with EDS, whether you’re newly diagnosed or still waiting for answers, I want you to know that you’re not imagining it. You’re not lazy. You’re not weak. Your body is trying so hard to hold itself together, and that’s a full-time job. You deserve care. You deserve to be believed. And if you used to dance, or swim, or run, or do anything that made you feel free until it didn’t, I’m sending you so much gentleness. You didn’t ruin your body. You were just doing your best with the information you had.

This month, I’m honouring the dancer I was, and the disabled person I am. They’re not opposites. They’re just different parts of the same story. And this story matters.