Why I Wish People Wouldn't Admire My Flexibility

When I was a child, I started to dance as soon as I could walk. I was an awesome acrobat and gymnast; I could stretch my body like a rubber doll. I loved tap, jazz, acrobats and ballet – I felt free, light, like a fairy. I thought that when I danced I was happy as one can be, but I was sad as well. See, you watch all the others dancing, doing flips and turns and you want to do them too, but although you can stretch as far as you like, your arms shake when you’re upside down.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I loved to dance, but I gave up ballet to pursue netball (also to get away from the mean ballet teacher) because I wanted to play netball. And I did play netball – I was good at it too. I’m a tall person, always have been and always will be. They nicknamed me “Ballet Dancer” because I was graceful and would turn and jump like a ballet dancer when I was on the court. And I loved it – it was fun being different. I loved to be the center of attention as a kid, but as I grew up I realized I didn’t need to be seen, I didn’t want to be seen, I wanted to be me.

Now reading this, you’re probably scratching your head, thinking to yourself, “What am I reading? So far this is a happy story of a sporty kid good at dance.”

I started playing netball in 2009, just 9 years old, in fourth grade. I loved it, but I wasn’t very good. I was very bad at knowing where my body was and I would hurt myself just about every game because I was clumsy. But despite being bad, I had fun and I wanted to keep playing, so I did. Each year I played netball, each year I would grow and each year my muscles would hurt and I started strapping my joints to keep them from hurting as much. In 2011, I was in a lot of pain all the time. My knees and back hurt really bad and I was struggling to play netball. Mum could see that I was struggling, so she took me to the doctors and…nothing. We were told that it was just growing pains. But it wasn’t. We pursued doctors for my sibling and I and eventually my mum came across an article about this “rare genetic disorder” called Ehlers-Danlos syndrome. She just knew. However, in Perth, Western Australia, it wasn’t really heard of. Doctors laughed us off, saying it was in our heads or that we were making it up. Ehlers-Danlos syndrome, the invisible disorder. Mum knew what I had and she was determined. We looked into doctors and eventually we found a rheumatologist that believed her. He looked at us and said, “Yep, Ehlers-Danlos syndrome, hypermobility type.”

We had finally gotten a diagnosis: Ehlers-Danlos syndrome. But there was still a lot of work to do. My mum pushed for help. She would walk into doctors, OTs, physiotherapists and more with a 50-page booklet all about Ehlers-Danlos syndrome.

With my new diagnosis in hand, I continued to play netball through all the pain because I loved it. Each year I would strap a new body part and my nickname changed from “Ballet Dancer” to “Knee Straps.” But this time, I wasn’t happy. As a child, I was seen as strong, amazing, flexible and interesting. Other kids would ask me to teach them how to dance and flex their bodies like contortionists. I would try but they couldn’t because they didn’t have Ehlers-Danlos syndrome. I was in pain, all the time, and I had taken my knee straps and strapping tape off of the netball court and into my daily life. I couldn’t walk without the chance and fear of my kneecaps popping out and collapsing on the floor, only to have kids laugh at me. I was no longer seen as strong, but as weak. I no longer loved netball because the pain of the game didn’t equate to my joy. I was 15 when I quit netball, not because I didn’t love the game, but because I had health professions tell me I was “crazy” and I would go home crying after every match because I had dislocated my shoulders, knees, ankles, wrists, elbows, hips and fingers. Every match. I joked about being made of strapping tape and braces and I had to quit netball because I could no longer play.

I am now 17 years old. I am an ex-netball player who can barely walk without hurting herself. But you can’t see that. I am a young woman.

See, from the outside I look relatively normal except for my knee straps, which people kindly like to stare at as I walk by. But what people don’t and can’t see is everything else. People can’t see all my joints dislocating and grinding on each other. People can’t see the pain I am in from simply waking up in the morning. People can’t feel the fatigue that sets in my muscles and joints after doing the most minute tasks like writing the alphabet out seven times or walking to the fridge. People can’t feel my chronic fatigue, chronic widespread pain, chronic pain or dislocations/subluxations. But people can see me stretch my body, move my arm 360° around and put my leg over my head, and so naturally people think it’s cool and say, “I wish I was as flexible as you!” But it is hard hearing that people wish they could stretch like you when you struggle so badly every day, and when you explain it to them they feel annoyed or say, “But why is that a bad thing?” It is hard living with an invisible illness, that has so many challenges and no known cure, but people feel entitled to have their say in how you live your life.

Because I wear knee straps to walk, it is a visual symbol that there is a problem, so people see that as the only problem, then suggest a way to fix it. I’ve heard a lot of really funny advice from random strangers on the street, so I thought I’d share my favorites: Have you tried warm showers? Drink less coffee. Have you gotten knee surgery? Try putting ice on them? (And my personal favorite…) Just walk it off, sweetie!

Now this story was not written for sympathy or to be a sob story, but I’ve written it to shed some light on Ehlers-Danlos syndrome. It is a genetic disorder affecting the collagen in our bodies which makes up bones, joints, muscles, skin, etc. It isn’t just a made-up illness for me to be special, nor is it an easy thing to live with. But being aware of it can be the most amazing thing for the world. I am sharing my story as a way to explain how complex the issue is, for parents to realize that just because something was there doesn’t mean it isn’t there now. For people struggling, know you are not alone and there are others here to support you. For people with EDS who want to explain things to people but can’t find the words, this is a story I hope can help your friends, and everyone else who needed things explained a little differently.

But to summarize this all, I would like to introduce myself. Hi! My name is Izzy, I have Ehlers-Danlos syndrome and I am struggling but I am strong. I am a young woman, a proud feminist and I am so much more than my body and how it functions (or doesn’t). You can find some amazing people in this world. This photo is of me and my best friend, Siobhoin. She is an amazing human who supports me through this and never gets frustrated at me crying on the phone to her about my pain. Amazing people are out there my zebras, they are the ones who support our stripes. Keep strong.