Written by Sara Strecker (May 8, 2009) for EDNF
In honor of May EDS Awareness Month

I go through my life invisible. No one knows my name or knows anything about me, but yet I am still there. I am the ache in the morning when sore joints, displaced during a ragged night of sleep, make themselves known.  I am the ripped skin and the dislocated hip. I am Ehlers-Danlos. 

There are those who know me personally, who know my ins and outs- know me intimately.  Many who know me, however, do not know my name nor what to do with me; all they know is the discomfort that I cause. They go through their lives with the aches, calling them different names – Arthritis, Growing Pains, Aging – never calling me by my true moniker. I am the great pretender. I am rare enough that I hide in plain sight, because everyone sees me, but no one knows my identity. 

But, I want my name to be known.  I don’t want to be invisible any longer.  If you know who I am, you can work with me so there is less discomfort, instead of just pushing through.  I don’t want to be misdiagnosed as growing pains; I want my name to be paid attention to. And when you don’t call me by my true name, I just scream louder.  The mild aches become sharp pains: Listen to me!  I want you to know who I am, I want you to know the real me. I want your family and friends to call me by my true name.

I am tired of being erroneously named. I am tired of being mistaken for a horse, when I am a zebra.  Look at the horses closely and you will come to see my hidden stripes. You can find them if you look hard enough – find me in the densest herd. Even the wind shows itself sometimes, you just have to look for it.    

Shout my name from the rooftops! Tell the doctors my origins!  I have been on the sidelines too long. It’s time for my coming out party. Tell your friends what I stand for - that way no one suffers needlessly, that way I don’t have to scream to get my name heard. I want every medical student to know me intimately, not just from some textbook:  every doctor to know how to diagnose me. I don’t want to be the rare zebra anymore; I want to be thought of when the hoof beats are heard in the distance. The cloak of invisibly can be lifted if you are brave enough to let me have my name.

I am Ehlers-Danlos syndrome and I warrant being noticed!