Ehlers-Diagnosis Syndrome

For a long time after that appointment with that chiropractor in 2006 who told me I had this weird thing I had been born with of joints bending backwards, the words “Ehlers-Danlos Syndrome” haunted me.  I couldn’t say them.

Always, when I awoke, I’d have a brief moment when I’d forgotten those words. Like when someone you love has suddenly died, you wake up and at first you think it was all a bad dream. Then I’d remember and descend into blackness.

I cried to myself in the middle of the night. I was so mad. I knew I did not have it in me to endure decades more of Ehlers-Danlos torture. I had only kept going before because I was so sure I was sick and one day I would be well. Because being so sick and in so much pain made no sense anyway! Surely it was all going to resolve somehow, right? I had no idea I was having a completely different life experience than everyone else.

Back then Shari Gamson (lucky you if you ever met that lovely woman) was running a local support group that met sometimes on Sundays at the Sherman Oaks Hospital. What a strange experience it was to walk into a room of people who were just like me, except these people were not first degree relatives. I was just like them. We were sick people. Struggling. Hurting. Tired. Out-of-it. Spaced out. Distracted. Kind of annoying, too.

It was fun and amazing to be around people who are like me. This really was what was wrong with me! But this was also totally depressing. Oh, no! Every crazy body problem I’d ever had was just normal for Ehlers-Danlos. Hooray. Things were only going to get worse for me. Even more fun. Nothing can be done for me. Yipee. 

My diagnosis was a lot to take in. It didn’t help that I was perpetually on the brink of totally losing my mind from pain and sleep deprivation.

I would have liked to have grieved the full life I once had, but I had never had one. I’d always been too sick to function. Instead, I embraced my shattered dreams. They cut me to shreds. I dropped them.

One thing at a time, I told myself. Let me get used to these words. A day was coming when the shock of it all and the desire to push them out of my mind would stop. A day when I would hardly remember a time when I didn’t know those disgusting words “Ehlers-Danlos Syndrome.”

The most ugly, awful words I had ever heard.

Their sting would pass. Those words would become part of who I am. That’s how time works, if you try to move along with it.

It took a while. 

I am glad I stuck it out, embraced my life, went on the ride. I did not get to caught up in acceptance. Acceptance is the first step, then you must be effective. 

Being able to dance makes it all worth it.

Silent Disco on Santa Monica Pier.