But I'm Not Dead Yet

Welcome to Ehlers-Danlos Syndrome

The first time a doctor explains your entire life as the symptoms of an often fatal syndrome, you finally feel understood. So grateful to know the life long battle with constant, weird, physical attacks has a name. But you just wish it was a different name…like the flu, or cancer.

There are at least 6 things you must know and follow if you have been assaulted by Ehlers-Danlos:

1:  The first rule of living with Ehlers-Danlos Syndrome, EDS, is to learn that no one, absolutely no one, else, will understand it. Even most doctors. Like the direction of your life, EDS is mercurial, changing just to be inconvenient.

2: Blame someone in your family for all of the dislocated knees, fingers, wrists, hips, toes that you have personally pushed back into their sockets. Blaming the mother is always good, the genetically insufficient collagen that causes EDS and makes you so flexible most likely came from your mother. and grandmother, and great-grandmother…This syndrome just goes on with very little effort to stop it.

3: Accept facts: your bloodline is cursed to constantly fight legions of demons of pain for eternity, and since EDS likes girls best: start apologizing to your baby girls the moment they come shooting out of your…hoo-haw. And they will – come shooting out – like they’re at the end of a downhill slip and slide, because your loose hips will just fly apart creating a ramp for a swift-ish departure. Ironically, the hip trick is how you got into this situation in the first place.

4: The first day doctor, the one who knew you had EDS just by asking questions, will then send you to a specialist for the torture part of the diagnosis. The gratitude of finally feeling understood is slowly replaced with feeling like you are made of rubber bands that are about to snap.

5: With the super flexibility benefit of EDS, dancing professionally or contortionist with Cirque du Soleil, are your only vocational opportunities. Be grateful at 60 you chose one of these. Love the beautiful pictures you created by wrapping your leg around your head. Please remember this when you now, unsuccessfully, try to roll over in bed. As you spend your required 100 nights in the emergency room, remember you ‘youstacould’ bend in half backwards, because if you don’t, you will not make it out of this syndrome alive.

6: Make the choice to bury the mounting fear that every single joint will give up, until they do. Practice the deceptive art of covering: all the pain-all the time, minor heart attacks, dislocations, and anger. “Covering” will deteriorate you completely, but will comfort your family and friends. Consider, it may not be worth the toll on your body to only keep the ‘others’ happy.

Now, take 20 minutes to find a comfortable position, under ice, and think through how you’ll survive the next 6 surgeries with humor and strength, and not strangle anyone who says, “But, you don’t look sick.”


So true


  1. Ellen Ogden

    Hugs to you my Especially Bendy friend!!! 🤗

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