“Hello Zebras!
My name is Desiree Schwartz, I’m 32, and I’ve been actively engaged with The Ehlers-Danlos Society conferences since 2019. I love writing and drawing anything that really allows me to express myself. This is a poem I recently wrote that I feel may resonate with others. Remember to always dazzle.
Zebras Got Talent Entry 2025
Here we go again; now in 2025
The need to prove we’re “sick enough”
when in fact, we’re just trying to stay alive.
I guess we’ll chalk it up to..
“They don’t understand”
The pain we wake & go to bed with,
IS just one of endless symptoms that go hand in hand.
The emotional burden, the stress, the fear..
of being so unheard..
in a world where fighting for equality is already rare, and definitely misunderstood.
If we could best describe what us zebras
go through each and every day,
I’d imagine it’d sound a lot like this-
most days don’t go our way.
The weeks are filled with specialists that order labs and tests
sometimes we’ll get answers,
though always not the best.
Sometimes there’s no answers at all..
I don’t know which is worse.
Having confirmation or going crazy,
Our brains seem like they are cursed.
Constantly on high alert,
Protecting our bodies-
It’s a hard job to do.
Anything can change within a minute,
it’s just more common for us than you.
Sometimes people forget,
Because they can not see…
How much it takes to function “normally” within society.
How we must push through the pain,
even when we’re drained.
Because this isn’t a world that lives without
the visual to its name.
If you really understood, then you’d agree with me-
That just because one day is amazing, doesn’t mean the next few are simple as can be.
We pick and choose what we can do and what our bodies can handle,
though it’s an educated guess, an unknown, a bargain,
sometimes even a gamble.
As the time go on,
It makes it harder for to see
That you never know someone’s background, all the behind the scenes.
If anything you take from this,
Be gentle with yourself.
You have so much uncontrollable,
It’s hard beyond a doubt.
But look around and soak it in,
Look at all this support we have.
Us zebras have community,
and for that I’m oh so glad
I feel blessed to call you all my zebra family
One where you understand it all
and make me feel the most alive and free
with what’s now become
a major part of me
-Writer: Desiree Schwartz
