So, no more hiding in the medical closet - today I am making the blog go visible. I am disabled. It was actually official over a year ago when I finally got diagnosed, but I just couldn't accept it completely then (although is was a HUGE relief to finally find out what was wrong, but more on that in later posts). Some people who are close to me know the whole story, and I've dropped enough hints all over Facebook, but I just couldn't make the big step. So I just did.
This has been a long and weird journey, and I'm guessing it will get longer and weirder.
It was suggested to me by a casting director friend that I not let people know about this. That if it got out, I'd be considered an insurance risk even for parts that I could physically do. But that list now has so many "riders" on it, that I decided I might as well "come out" about it and see if I can spread awareness of a little-acknowledged medical condition - it's so little-acknowledged that even those who manage to get a diagnosis still have to fight against prejudice for treatment. We're called "malingerers" and "drug-seekers" and "hypochondriacs" and sent to psychiatrists because it's "all in your head", because the condition is rare and doesn't show obviously (though any of you who have seen my trick with my elbows would probably say that it looks pretty damn obvious to you!)
So I'm a "medical zebra" - have been since birth, as Ehlers-Danlos is genetic, and getting my diagnosis has put together puzzle pieces for me when I didn't even know I was a puzzle!
I'll probably skip all over the place in this blog. I'll describe what I'm finding out about the syndrome as a whole, as well as the version that affects me. I'll talk about my past and the clues I ignored - because I didn't know they meant anything! I've been lucky with my doctors, but there are many terrible tales of bad medicine on the Ehlers-Danlos Support Message Boards, and I may share some of those. I'll talk about how our medical community - and most others around the world - aren't set up to handle, or even recognize, chronic illness or chronic pain. And I'll talk about my frustrating journey through the "social safety net" and the people I've watched fall in the cracks in the government offices that are supposed to help.
Mostly, I guess I'll just be one more voice trying to raise awareness of a painful genetic connective tissue disorder that I didn't even know existed until a year ago.
Thanks for listening,
- Cy
This has been a long and weird journey, and I'm guessing it will get longer and weirder.
It was suggested to me by a casting director friend that I not let people know about this. That if it got out, I'd be considered an insurance risk even for parts that I could physically do. But that list now has so many "riders" on it, that I decided I might as well "come out" about it and see if I can spread awareness of a little-acknowledged medical condition - it's so little-acknowledged that even those who manage to get a diagnosis still have to fight against prejudice for treatment. We're called "malingerers" and "drug-seekers" and "hypochondriacs" and sent to psychiatrists because it's "all in your head", because the condition is rare and doesn't show obviously (though any of you who have seen my trick with my elbows would probably say that it looks pretty damn obvious to you!)
So I'm a "medical zebra" - have been since birth, as Ehlers-Danlos is genetic, and getting my diagnosis has put together puzzle pieces for me when I didn't even know I was a puzzle!
I'll probably skip all over the place in this blog. I'll describe what I'm finding out about the syndrome as a whole, as well as the version that affects me. I'll talk about my past and the clues I ignored - because I didn't know they meant anything! I've been lucky with my doctors, but there are many terrible tales of bad medicine on the Ehlers-Danlos Support Message Boards, and I may share some of those. I'll talk about how our medical community - and most others around the world - aren't set up to handle, or even recognize, chronic illness or chronic pain. And I'll talk about my frustrating journey through the "social safety net" and the people I've watched fall in the cracks in the government offices that are supposed to help.
Mostly, I guess I'll just be one more voice trying to raise awareness of a painful genetic connective tissue disorder that I didn't even know existed until a year ago.
Thanks for listening,
- Cy
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