What is Ehlers-Danlos Syndrome?
Getting to know your bendy, brilliant, unpredictable body.
Imagine your body's connective tissues as glue.
It holds everything together: your joints, skin, organs, blood vessels, and even the space between your cells. Now imagine that glue is… well, let’s say it was mixed by someone who maybe got distracted mid-recipe.
That someone? I like to call them Gluey—my mischievous little collagen goblin. They’re well-meaning but a bit chaotic. Maybe they spilled too much elastin. Perhaps they got the collagen sequence backward. Either way, you’re left with glue that’s a little too stretchy, not quite strong enough, or applied in all the wrong places.
The result? A body that bends in ways it shouldn’t, bruises easily, gets tired fast, and often doesn’t get believed.
But here’s the thing: it’s not your fault. The problem is the glue, not the person it holds together. Externalizing EDS—thinking of it as Gluey doing their quirky, confusing thing—can help take the blame off you and place it (gently) on the biology that built you. And that’s a powerful shift.
So, What Is Ehlers-Danlos Syndrome?
EDS is a group of genetic connective tissue disorders caused by differences in collagen, the body’s “glue.” Connective tissue is everywhere, so EDS can affect just about everything: joints, skin, blood vessels, digestion, nerves, and more.
There are several subtypes of EDS, the most common of which is hypermobile EDS (hEDS). While each type has its own quirks, they all stem from the same root problem: connective tissue that doesn’t behave as it should.
This glue is often too stretchy, weak, or disorganized in people with EDS. That can lead to:
Joints that dislocate or sublux easily
Chronic pain and fatigue
Digestive issues, dizziness, easy bruising, and other “mystery” symptoms
A long history of being told, “That’s normal,” or worse, “It’s all in your head.”
TRENDING
TRENDING
Why It’s Trending,
Yet Still So Misunderstood
You may have noticed that EDS and hypermobility are suddenly being discussed more. TikTok, Instagram, and online forums are full of bendy folks swapping stories and symptoms. Awareness is growing, but medical education is lagging behind.
Many people with EDS still go years without diagnosis, even after seeing multiple specialists. There’s still debate in the research world about how to define hEDS and distinguish it from hypermobility spectrum disorders (HSD). This uncertainty can be frustrating, but it also means your lived experience matters more than ever.
Understanding your own body is the first step toward self-advocacy, better care, and a plan that actually fits your life.
Your Story Is More Than a Diagnosis
EDS isn’t just a diagnosis—it’s a lens that helps explain why your body does what it does. It’s not a flaw. It’s a different framework.
By getting curious about your biology, you take the first step toward changing your relationship with it.
Want to Learn More?
We have many resources to support you along your journey.
Free Guide: The Pain Clarity Companion
This guide gives you seven simple, science-backed steps to start calming the chaos and rebuilding trust with your body.
The Safe Pain Blueprint ($27)
A 35-page, science-backed guide to help you understand your pain, calm your nervous system, and feel safe in your body again.
The Masterclass Free Preview
Learn to trust your body again. This comprehensive, evidence-based course offers clarity and practical strategies to help you reclaim joy and confidence.
Do you prefer One-On-One support?
I also offer chronic illness mentorship, where we meet to help you tailor strategies to your current situation and your desired goals.
