Eva’s EDS Diagnosis Story
When I first heard the words Ehlers-Danlos Syndrome, I was a mix of emotions. Relief, because for once, I wasn’t imagining all the weird things happening to my body. And overwhelm—because seriously, what even is connective tissue, and why does mine refuse to cooperate?
If you’re newly diagnosed, first, I want to say this: You’re not alone.
EDS can make you feel like you’re walking through life on eggshells—or like your joints are eggshells. It’s not just the physical challenges, though those are plenty—it’s also the feeling of being misunderstood by people who don’t get why you can’t just “push through” or “try harder.”
What helped me most at the beginning was educating myself, little by little. I found a physical therapist who specialized in hypermobility, and they became my go-to for managing joint pain and learning how to move safely. Joint braces were also a game-changer—honestly, they’re like armor for your fragile body parts. Compression gear, kinesiology tape, and pacing my activities helped too, even though pacing is a lesson I have to relearn daily (hello, stubborn overachiever in a bendy body).
The biggest shift for me, though, wasn’t about gear or tools—it was about mindset. Learning to listen to my body instead of constantly fighting it was… hard. I won’t sugarcoat it. But when I started treating my body like a partner instead of an enemy, things got a little easier.
You might feel overwhelmed right now, and that’s okay.
Take it one small step at a time.
Find a doctor who listens.
Explore tools that make life easier.
And connect with others who understand, because being part of a community makes all the difference.
You’ve got this (even if your joints try to tell you otherwise).
Lots of Love,
Eva (Founder of ChronicIllnessCommunity.com)