This week’s blog has been written by Sydney McFerrin, who lives with Ehlers-Danlos Syndrome.
“My name is Sydney McFerrin, I’m 16 years old and I had to put my sophomore year of high school and ski racing career to the side while I battle my chronic illness.”
People always say, “you’re so strong.” But they have no idea what I’ve actually been through.
They don’t see the full story.
They don’t know I’ve spent over 130 days in the Dallas hospital. They don’t know I’ve had over 20 surgeries, that I’m completely resistant to opioids for pain management, or that I’ve seen over 50 specialists and still don’t have answers.
All they see is someone who looks okay on the outside. But inside, I’m exhausted, in constant pain, and fighting for a life that used to be normal.
It started with my jaw. I had surgery thinking it would help, but something went wrong – something no one could have predicted. My jaw ended up crooked, I couldn’t chew, talk, or sleep without pain, and I developed constant nerve damage.
Later, I was diagnosed with Ehlers-Danlos Syndrome, a genetic disorder that affects healing and makes joints too loose. It explained some of my symptoms but not all.
For some reason, something extremely rare happened – so rare that top surgeons around the world are still trying to understand it. It’s clear there’s something deeper going on.
And no matter how many diagnoses I’ve been given, none of them fully explain the level of pain I’m in.
My life became appointments, treatments, injections, and more surgeries. I was supposed to be laughing with my friends, racing down ski slopes, and living like a normal teenager.
But everything changed overnight. I missed my entire ski season – my last one with the team I loved. I missed school, holidays, birthdays, and everything that made life feel normal.
Some of the worst moments have been when world-renowned specialists looked me in the eye and said, “I’ve never seen this before.” Imagine being 16 and hearing that.
After a custom jaw prosthetic was placed, it wasn’t healing right. Something was clearly wrong – but no one had any answers. I kept asking for help, but all I heard was “wait and see.” I had already been waiting.
And things just kept getting worse.
There are days I wish I could undo everything – every surgery, every decision I made trying to get better. I don’t sleep because of the pain.
I’m terrified this might be forever. I might look okay, but I’m not okay. I’m scared. And I’m still getting worse.
But I’ve learned that even in the darkest moments, you can keep going. You can be completely broken and still move forward.
If you’re going through something right now, please don’t give up. Even when it feels impossible. Even when no one gets it.
You are stronger than you think. I’ve lost so much, but I haven’t lost myself. I’m still here, fighting everyday, and never giving up. If I can keep going, so can you.
