Poetry: Meet Ehlers-Danlos Syndrome

Posted November 5, 2020

Me on holiday in Sephora NYC spending my first teacher wage.

Dominique has classical Ehlers-Danlos syndrome (cEDS), and shares her poem of life with EDS.

Meet Ehlers-Danlos syndrome
A rare connective tissue disease
An unwarranted friend
Bearing gifts of soft skin and dislocated knees.

It comes to the door more often than not
When you’d rather spend time on some other thought
Sometimes its a knock, sometimes its a chap
Yet in reality, it’s often a debilitating stab, jag, or snap.

Each person who suffers has their own familiar friend
Deep, sharp, or constant it sends us round the bend
Yet no matter how often you open the door
The disease returns looking to confide once more.

When our visible friends ask us where we’ve been
It’s difficult to explain the monster that we’ve seen
For invisible to all except those it befriends
Ehlers-Danlos syndrome can be a difficult concept to comprehend.

Genetically predisposed and diagnosed by age three
That’s when Ehlers-Danlos first came to visit me
My story started as a china doll
Protected from the world in case of slips, trips, and falls.

As an innocent child, you take it all on the chin
Literally and metaphorically speaking – let that sink in
Yet, the door only went once or twice a year
And I brushed off the pains whilst my parents lived in fear.

It took me some time before I began to understand
The complex and stubborn nature of the invisible illness first hand
By age 17 it came to a head
Chronic chest pain, palpitations, and days spent in bed.

Yet I continued on, never looking in the eye,
The invisible disease that wouldn’t comply
5 highers, a car, and a teaching degree
Sat in stark contrast to chronic pain and a dislocated knee.

Now age twenty-five it’s hard to ignore
The invisible illness chapping at the door.
Looking ahead it’s important to start
Inviting my invisible friend in for a heart to heart.
For its always been there and there it will be
Make peace with your monster like my monster and me.

Now next time you hear that familiar chap at the door
Open it up, make peace and restore
And remind yourself that your monster has friends
Other EDS patients on whom you can depend.

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