I’m so pissed right now.
I never got any copies of or access to any of the documents officially submitted for my Disability hearing, so I asked for them and got copies emailed to me. I finally spent some time looking through them today and noticed something I was terrified would happen actually happened.
The neurosurgeon I saw to discuss the Chiari and CCI – the one who told me he didn’t believe in Chiari 0/Acquired Chiari – actually put in a diagnosis of Hypochondria.
Hypochondria. Like I’m making everything up.
Even though there’s real evidence in my scans. Even though other doctors saw the slumping and listhesis. Even though I had a binder full of research to back myself up. Even though there’s ample research out there on connective tissue disorders and neurological manifestations. Not a lot – there’s still a lot that isn’t understood – but enough to prove him wrong.
On the sheet of symptoms I showed him, he said I had circled almost all of them, as if to say I circled just to circle, and not because I actually had any of those symptoms. It meant nothing to him that a lot of this is proven and documented.
I told him in the appointment that what he said didn’t match with any of the research I’d read, or conversations I’d had with others in support groups, or videos on YouTube from ACTUAL CHIARI EXPERTS. He didn’t even discuss this sheet with me in my appointment. He didn’t read it. I gave it to him, he gave it a skim, and he rolled his eyes. (Side note: he also has me listed as being lesbian, though my cis male husband was there in my appointment with me.)
We’re fucking screwed all around with these conditions. Can’t get help because we can’t find doctors who know enough. So, we look for doctors who know some and are willing to learn. Then we amass all applicable research and take it with us, expecting to use it to back up what we say. Good drs accept this research and read it. Unfortunately, most of us don’t find even that. We find drs who think they know but actually don’t, and WE get written off as crazy because what we express isn’t clearly shown in tests and because what we tell them doesn’t line up with their INSUFFICIENT education. This guy, like your #typicalarrogantdoctor, had zero interest.
And what can I do? I can file a complaint to his hospital that’ll get a standard “I’m sorry you’re dissatisfied” and no recourse or consequence for the dr. I can post reviews online that go mostly unread. I can send him copies of articles, links to videos, etc. that he’ll pay zero attention to. I can write him a letter that he probably won’t even see because it’ll get read and blown off by some assistant or nurse, and even if he does read it, he’ll blow it off because he already has me “diagnosed” as crazy. (See previous posts with pertinent research here and here and sprinkled throughout other blog posts on this page. You can also learn a lot from Chiari and Syringomyelia Foundation videos on YouTube.)
What power do I have? I have this black mark on my medical record now that I know is both false and harmful.
AND THIS IS FUCKING STANDARD!! Ask any group of people with EDS, CCI and Chiari 0, and nearly all of them will have stories about their symptoms being written off as some mental condition by the specialists who are supposed to know about their conditions.
I’m at a loss today. Feeling pretty defeated and angry. Thinking about sending him a copy of Fucking Arrogant Ignorant Doctors with a stack of research printouts and discs of videos. I know it’s futile, though. If he cared to learn more, he would’ve expressed it already.
THIS kind of asshole is where medical PTSD comes from. And we, as patients, have no choice but to keep fighting through these, the MAJORITY of doctors, to track down those who do actually know enough to be more helpful than harmful. I wish I’d found at least one before going to my hearing.
All I can do now is wait for the judge’s decision and hope that she understood and believed me and that she also understands how much some drs can suck, especially with rare conditions.
If you’ve had any experiences “correcting” harmful doctors effectively, I’d love to hear about it. What did you do to get through to them? Do I have grounds for any legal recourse? Is there ANYTHING I can do here, or do I just have to wail until I find a good dr who’ll do the right tests and knows what he’s talking about so he can provide legitimate and accurate records in my chart?