First off, my tension and anxiety levels were heightened just going in there. I know the doctors who work for the SSA are over-burdened and (often) under-qualified. I was assigned to an internist - a good sign! - to be examined for arthritis - a bad sign! The Arthritis Foundation recognizes Ehlers-Danlos, but it's not actually arthritis - it can lead to premature osteoarthritis, which I have, but you're not gonna find it with a typical arthritis movement test. An arthritis movement test is looking for limited movement. While I have pain with movement, I AM HYPERMOBILE! I can do the arthritis movements plus much more! But I had hopes that this guy being an internist, he'd look at the fact that this is a system-wide syndrome and disability.
Ha ha. Ha.
First off I got into an actual argument with the nurse who took my vitals. My BP was high. This is very unusual, as my BP is usually corpse-like, but BP in EDS tends to run up and down as the body tries to regulate itself, so it can go temporarily high. Plus, I was already upset being there. I told her it was probably high because I was upset to be there and she challenged me on why I could possibly be upset! Then she kept insisting on the info on my PCP so she could set me up to have my BP checked and put me on meds. I probably would have just given her the info, but my PCP is in insurance limbo right now, so I argued with her. I was stupid. I'm already on the verge of tears.
Then I go to the internist. He immediately misunderstands who made my EDS diagnosis and it takes quite a bit to straighten that out - he's only partly listening to me. Then I tell him that I know it's considered rare, so I've brought some new info about the condition if he'd like to see it. He says "We've seen at least 4 of you here. Ehlers-Danlos isn't new - we've known about it for a hundred years!" I wanted to ask him if he was still treating other medical conditions with 100 year old information, but I didn't dare. He was already being short with me and I have to depend on what he submits to the judge.
Then he asks me what Type. I say Hypermobility Type. He says, "No, what Type, what Type? I, II or III?" I said that it would have been Type III, but the classifications got changed a few years ago and now it's Classic, Vascular or Hypermobility Types, with 5 more besides.
"What TYPE? I, II or III?!"
"Okay, Hypermobility, Type III."
"Type III??? They told you you're Type III????"
"Yes. Hypermobility, Type III"
I have NO idea why he was surprised at Type III. Maybe he's one of those backward docs that still looks for Marfanoid features, which this chubby gal ain't got. And which have been shown to seldom apply to EDS diagnoses.
So he asked about onset and I said "It's genetic - I've always had it."
"But you got diagnosed in 2012"
"But I had my first dislocation and surgery in 1976"
"You had actual surgery for it?"
"For all of the knee dislocations"
<my internal voice says: It's right there in front of you. Oy.> I pointed to the sheet of paper he was holding.
"So when did it get in the way of work?"
"I've always pushed through pain to work" - he began to interrupt me - "BUT it started to get bad in 2008 when I started to fall alot and drop things - even dropped things onstage."
That seemed to settle that.
He asked about family history of EDS. He checked my messed up knees. Took the brace off my wrist but didn't press to see if it hurt on the tendon (which it DOES and which my rheumatologist sometimes apologetically checks because he knows he needs to). Had me walk, which I did with braces and shoe inserts in place, asked me if I could walk on my toes - when I hesitated, he said I didn't have to. I told him I might dislocate that part of my foot. That gives me some hope that he gets some of this.
Sure enough, he did the arthritis test. I said "Ow" but of course I was able to do the movements. Idiocy.
He asked me about my diagnosis - he was still under the misapprehension that I had been diagnosed at the NIH and had brought that diagnosis with me (this mixup is too long and stupid to tell)! I said "What do you mean diagnosis? Do you mean you want me to show the Beighton or Brighton Scales?"
"No, you said you had a diagnosis!"
"Yes, but I didn't bring it with me. No one told me to bring it with me. It's in my SSDI application. They have all that paperwork!"
He flipped through the papers I brought about EDS - he just flipped. Didn't read a word. Just wanted to see what I had brought.
He checked none of the Beighton or Brighton Criteria.
I was in tears of frustration and anxiety throughout this entire time. And he was done.
Next I was sent to the psychologist for anxiety. Most EDSers' "anxiety" is caused by high adrenaline levels, but I have some extra anxiety of my own. The Psych was nice. He asked questions about my braces; I told him "That was more than the internist asked." He asked about my struggles with daily living. When he asked me about my hobbies, I burst into tears. I told him I was sorry, it was just that I had lost so much. "You mean your acting career?"
Theatre and music are both my career and my hobbies - for years they've been my whole life.
But I just nodded.
So, it's over. It's possible because of my age that the judge will read the report and just go ahead and give me the disability without needing to schedule me on the docket. Perhaps not. All I can do is wait. If they give me an On The Record Decision it will be positive, and it will come by mail saying when I can expect my back payments. If they move it to the docket, I'll get a letter telling me when the case will be held and what judge.
So the mailbox is currently the focus of my attention. And anxiety.
But I tell you one thing. When this whole process is finally behind me, I am gonna do EVERYTHING in my power and with any connections I may still have to get this damned Syndrome front and center so doctors get educated about this! They are asking the WRONG questions and not allowing us to fill in the blanks, because they don't believe there ARE any blanks! And I'm gonna try and make it easier for every EDSer - and hopefully every Invisible Illness sufferer - who comes down this frustrating, tear-filled road after me!
<raises arm in Scarlet O'Hara pose. shakes little fist. grimaces in pain and sits down>