🌿 When Invisible Injuries Become Real: Living with EDS Through the Seasons of Life
When Invisible Injuries Become Real: Living with hEDS Through the Seasons of Life
As a former dancer and now a movement educator living with Ehlers-Danlos Syndrome (hEDS), I have learned that my body doesn't always play by the same rules as others.
Injuries sneak in where no one sees them coming. And they stay longer than expected.
This is one of those stories:
This week, I sprained the side of my ankle — not from falling or twisting it, but from walking a bit too long and teaching movement afterward. For most people, that wouldn't seem like a big deal. But for those of us with Ehlers-Danlos Syndrome (EDS), this is exactly how injuries often happen.
With EDS, the connective tissue that holds our joints together is overly stretchy and fragile. What might feel like “normal” movement to others — walking, standing, even sitting — can slowly overstretch ligaments or shift joints out of place.
These are the invisible injuries that no one sees coming. But they’re real. And they hurt.
In my case, I walked for an hour, taught for five, and then drove four hours back home. At some point, my ankle made a scratchy, odd noise and felt out of place. My heel had to “click” back — a classic hypermobile moment. Later that evening, the side of my foot went numb. Then came the swelling.
Now, I can’t point my foot and I’m wearing a boot to recover.
This isn’t about doing something wrong. It’s about living in a body where the connective tissue doesn’t do its job — and where living life itself can become an injury risk.
And yet, it’s often misunderstood or dismissed because it doesn’t look dramatic.
So, I’m sharing this not just as a story, but as a reminder:
our experiences matter, even when they're invisible.
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"With EDS, the pain often begins long before the swelling does - and long after others would believe it. "
🌕 EDS and the Seasons of Life
Many people ask, “Does EDS get worse with age?”
My answer — both personally and from what I’ve seen — is yes, in many ways it does.
As we age, everyone naturally loses collagen and muscle tone. But if you have EDS, that collagen was already faulty to begin with. What you lose is not just skin firmness or elasticity — it's the body’s ability to hold itself together. Add in the hormonal shifts of menopause, and symptoms often intensify. Estrogen plays a key role in maintaining connective tissue, so when it drops, many of us notice more pain, joint instability, fatigue, or even increased symptoms of POTS or brain fog.
This doesn't mean we’re helpless. But it does mean we need to adapt — with more support, more strength-building, more rest, and more compassion for ourselves.
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It is meant to remind them that common symptoms usually point to common conditions. But for people with Ehlers-Danlos syndrome (EDS & hEDS), we are the zebras - the rare conditions that are often overlooked or misdiagnosed because they don't fit the "usual" patterns.
The Zebra has become our symbol - a reminder that rare is real, and visible or not, our struggles deserve recognition, respect, and understanding.
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"Not all injuries leave a visible bruise. Some just change how you trust your body."
🧘♀️ Living Gently, Strongly
For me, this means wearing the boot. Cancelling when I have to. Modifying how I teach.
And refusing to apologize for needing rest.
To those living with invisible illness, chronic instability, or pain that doesn’t show up on scans: I see you. You are not weak. You are not exaggerating. You are learning how to live in a body that writes its own rules — and still choosing to show up with love.
And that is strength.
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Common Signs of EDS-Related injuries:
* Joints that feel "off" or out of place
* Delayed swelling or bruising
* Numbness or tingling along tendons
* Pain after minimal or repetitive movement
* Injuries without a clear "event"
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If you live with EDS or an invisible condition, I'd love to hear your story. Drop a comment below or share this with someone who might need to hear they're not alone!
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