Appearances are deceiving

Oh Twist!

Zebra skin image Such beautiful zebra skin

Appearances are deceiving. Everyone has undoubtedly experienced some form of misunderstading, bias or disrespect from some form of misjudgement based on our appearance, sick or not. (Racism, sexism, agism). But the appearances of those with any form of Ehlers-Danlos Syndrome are especially deceiving, as the majority with it show no visible outward signs of illness at all. Every EDSer (aka “zebra” from here out) has heard some variation on any of the following and many more all our lives:

“But you look so good!”

“But you don’t look sick!”

“You’re how old? You don’t look ___  years old!”

“Your x-rays/ scans are clear”

“Your lab results are negative”

Etc., ad infinitum.

If only pain glowed, sigh. This disease is hard enough to live with to begin with, much less have to battle so hard to be diagnosed due to so much misinformation still abounding “out there” as I’ve already described at length. …

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