My Ehlers-Danlos syndrome (EDS) journey started a long time ago. Aside from the typical growing pains and one-off symptoms from other conditions I have, I started truly getting symptoms a few years ago.
Even as a dancer for half of my life, I never experienced the pain of ballet until the winter of 2021. I had my first hip subluxations, locking ankles, and hyperextensions. Working closely with a lovely physical therapist (PT), I fixed some things which helped me and my pointe work, but my hip hypermobility and subluxations bothered me too much to be arbitrary.
In 2022 and 2023, I started seeing my primary care doctor for nervous system issues. In August last year, I almost fainted multiple times and started having problems with my heart. Starting and stopping numerous medications in the fall, I learned quickly that most meds didn’t interact well with my system, leaving me with nausea, dizziness, and vertigo in September and October.
All of my new symptoms kept snowballing, leading to new doctor’s appointments. In November, I finally saw a rheumatologist and was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). The more I learn about it, the more I’m able to finally understand why my body doesn’t work properly.
This year I’ve had a huge set of issues, especially with my dysautonomia, joint instability, gastrointestinal issues, and kidney system. I travel around once a month to go see different specialists three hours from me (thanks mom for always driving me!). I’m so grateful for the help my hospital has given me, the work my PT has done with me, and the strength I’ve gained to keep fighting every day. I dance pre-professionally now, and my body still has trouble keeping up from time to time.
My health still feels largely invisible. Sometimes I have to hide my symptoms so I can continue to grow in dance, and that’s hit me hard emotionally. I have such an incredible support system though, and I couldn’t have made it this far without them. I have learned to change my world to benefit me: online schooling, meds, PT, exercise, and lots of moderating. I know I still have a long way to go and more problems to be diagnosed. I’m still here, and I hope that if I continue to spread my light, maybe people won’t feel as invisible as I once did. My chronic illnesses don’t define me. They just make me fight a little bit more than others. But they won’t ever stop me from doing what I love! – Peyton
Peyton is a member of The Ehlers-Danlos Society’s Teen Council.
