fullyarticulatedgoldskeleton:

You know, I keep getting asks about my diagnosis, generally within the framing of “I want to know so I can see if I have the same thing.”

There was a time when I had my diagnosis in my About. I took it down because, after years of trying to make it fit, I realized it didn’t anymore. The only aspect of my previous diagnosis that made sense to me was “avolition.” Most doctors I talked to hadn’t even heard of it, and those who had argued that I couldn’t possibly have it because I was “too coherent,” without bothering to investigate further.

I kept telling people over and over again that I have trouble making a connection between a thought and an action and that this happened whether or not I was depressed, and nobody investigated further.

I spent over a decade clinging to a diagnosis that only sort of made sense because “avolition” was the best word I could find for the inability to initiate tasks that had nothing to do with depression.

I have not been getting the help I need because I kept getting misdiagnosed over and over and over again. I have been dangling at the edge of a cliff by my fingers where the only thing between me and losing everything I’ve worked for in life is the kindness of friends. I have gone to doctors faithfully and tried medications and tried therapy and applied for SSI over and over again and here I am today with zero help relevant to my disability. I have been forced to beg for donations just to keep myself where I’m at, but never to improve my life or go forward. It’s like the past five years of my life has just been waiting. Waiting for the doctors to help. Waiting for a caseworker to call back. Waiting for my SSI application to go through, waiting for a response. Waiting, waiting, waiting to get help that might not ever come.

I don’t go out much. I don’t get to see people. I don’t go to the park, or the library, or the local fair. I sit in my apartment and I try to entertain myself as best as I can. Mostly I’m okay. I’m used to being alone and I’m used to occupying my time with books and the internet. But it’s extremely boring and extremely limiting. There are things I want to do with my life. There are places I want to see and people I want to meet. But I can’t go, because I’m waiting. I don’t have the money or the transportation to go anywhere.

What this is all building up to is that I don’t actually give a fuck about diagnostic labels. If it’s possible for the professionals in my life to consistently miss, over and over again, that I’m disabled, whether or not I have the proper diagnosis, whether or not I have words for what’s going on with me, then why should I care whether my brain fits into this box or another? I kept telling people “this is what I think is going on with me” and they’d say “no, because the label on your box says something different” and then they would never suggest re-diagnosis. I have had a doctor outright give up on trying to treat me and say she was “stumped” without referring me to anyone else, rather than think, “Hey, maybe this diagnosis is no right for you?”

Because professionals have consistently, and for years, been wrong about me I have been forced to sit completely still in life. I have been forced to endure isolation and boredom.

What has helped me, instead, has been communities full of disabled people talking about their experiences. I’ve found things in common with people across all sorts of diagnostic labels, when psychiatrists would tell me that’s not possible, because brains belong in boxes and the boxes never ever touch. But I’ve found things in common with people who have depression, or autism, or ADD, or even chronic illness. I’ve learned new things about myself through knowing other disabled people, and I’ve learned coping strategies my doctors have never even heard of, and more importantly I’ve learned to have hope for the future, because I know now that being a happy disabled person is an option (as opposed to either my life will always suck or the right treatment will make me abled).

I’m not going to be able to offer anyone a diagnosis by telling them mine. Instead I’m going to point to the things that helped me. There are a lot of reasons a person could have trouble in school. Learning or developmental disabilities. Executive dysfunction, concentration problems, autistic inertia, avolition. Sometimes prompting helps, sometimes breaking things down into tasks helps, sometimes visualization exercises help, setting alarms, and so on.

I’m also chewing over the idea that maybe I won’t ever put my diagnosis in my About again. Not because it’s a secret- I’m not ashamed of it, I’m not afraid of what strangers will say about it, and I discuss it regularly on my blog. But because I want to encourage people to respect disabled people’s privacy. Even if you’re disabled, yourself, “what’s your diagnosis?” isn’t all that different from “well what’s wrong with you, then?” I don’t feel like disabled people should have to automatically disclose in order to talk about disability. I talk about the way my disability works and how it affects my life, and those things are not unique to my diagnosis. Like I said, there are people across many diagnostic labels who share those things in common with me. Sorry, but I can’t diagnose you over the internet, even if my story really resonates with you. I encourage you to check out a variety of bloggers who talk about ADD, autism, executive dysfunction, inertia, or avolition, though.