‘It’s really selfish of you to always ask for help.’ Everyone thought I was pretending to be injured.’: Disabled dancer shares journey with Hypermobility syndrome

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“The entire room gasped. ‘The splits were way too easy,’ I thought. As a kid, I did them all the time. They were just such a good party trick! Little did I know, doing the splits SO easily was a sign of a chronic illness called Hypermobility Syndrome (HSD).

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Hi. My name is Navya, I’m a disabled dancer and I suffer from HSD. With HSD, my joints are unnaturally loose. This enables me to do crazy things, like the splits, easily. HSD does have a dark side, however. Thanks to my illness I have hurt my left knee, right toes, Achilles tendon, and thumbs—all by the age of 22.

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You might just think, ‘Hey, why not just get it treated?’ Fun fact: HSD has no cure. To make things worse, it’s an extremely rare disease. It only affects one in 5,000 people and is part of a bigger, rarer condition called Ehlers Danlos Syndrome. Due to the small prevalence, the majority of my doctors had no clue what was going on. If doctors didn’t know my condition, could you imagine how clueless the rest of us were?

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The lack of knowledge eventually led to doubt. Everyone thought I was pretending to be injured. Someone even wrote me a letter saying, ‘Please stop pretending. We want to spend time with our friends and it’s really selfish of you to always ask for help.’ Words can’t describe how much that sentence wrecked me. It’s been 6 years and it still hurts. When I first read it, I was angry. Not just at the person who wrote it, but at myself. Here I was, in my late teens. Supposedly at my prime. Yet, I was struggling to walk.

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It wasn’t until I was on my third physiotherapist I was exposed to the term HSD. She took a look at my history and said, ‘You might have Hypermobility Syndrome.’ It was worth noting she had extremely limited information. After all, HSD was new territory for doctors in 2015; not many knew how serious it could get. But that limited information was the first step in understanding my body. As time went on, I met more physiotherapists and I understood how serious my condition was.

Malcolm Fu Studios

HSD doesn’t just entail injuries. It is also associated with fatigue, skin issues, anxiety disorders, gastrointestinal issues, and pelvic/bladder dysfunction, almost all of which I experience. As a dancer, it is a nightmare to be told you have a chronic, physical illness. That illness turned my entire world upside down. I used to train professionally 6 days a week. Instead, I was stuck in a cycle of going to class, having an intense flare-up, and waiting months to feel okay again.

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And then one morning, something clicked. I randomly put on some music, sat down, and did some upper body improv. I had no intentions with it. I didn’t intend to become a ‘disabled dancer.’ I didn’t intend to ‘break boundaries.’ I just wanted to move! I ended up recording a video of my improv and decided to post it. It was some ‘realness’ for my feed. I got a few encouraging comments, nothing huge. Nonetheless, as time went on, I recorded and posted more. I simply liked the agency of being able to move again; even if it was limited.

Malcolm Fu Studios

One of my friends eventually said, ‘You should really make these HSD-friendly choreos your thing. You could even post videos on YouTube.’ That comment stayed in my head. The following week, I was in my 2-week quarantine and immensely bored. I decided to properly choreograph an upper-body dance, film a tutorial, and post it on YouTube. The tutorial did not go viral. But the few who DID watch it, really liked it. And they did not hide their approval.

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I took a look at these comments and realized my friend was right. I was onto something. Who cared if I couldn’t dance with my legs? I could do it with my arms! There are probably plenty of injured/disabled/chronically ill dancers who are in the same boat. And I was right! As I posted more choreos and tutorials, I began interacting with more disabled artists. It’s been so fun, exercising my creativity and building a community again. I simply can’t wait for what else is to come.”

Malcolm Fu Studios

This story was submitted to Love What Matters by Navya Singh. You can follow their journey on Instagram, YouTube, and their blog. You can also sign up Navya’s dance classes here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories from chronic illness warriors:

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