Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Wednesday, August 7, 2013

Wheeling Around as an Outpatient Adult

Trigger Warning: Injury, presumptions of incompetence, hospitals

So, this is the fourth hospital story that wound up happening after I started writing about hospital stories. This is about my knee. I'm putting it up today because I want to link it in today's post for We Are Like Your Child and that means it needs to exist.
I play Ultimate. Depending on how much of my blog you read, you might have already known that.
I'm almost certainly dyspraxic. Given statistics on how many autistic people have some sort of movement issue, that's not exactly shocking.
I have really high pain tolerance. That's what the post on We Are Like Your Child is really about (That's a link.) It's a pretty common thing in autistic people: I remember this one parent saying I wasn't like their kid because their kid didn't realize their arm was broken. Yeah, um, I've had 3-6 broken bones in my life, none of which made it onto my medical records for the same reason your kid didn't know their arm was broken. 2-3 were in legs/feet, and I was walking around on them. One of them I directly stated wasn't broken because it "doesn't hurt enough to be broken." (That was my nose, not my leg.)
Those are the things that added up for me to have this story, I think.
I assume I did this playing Ultimate. Towards the end of the season, finals and such made participation decrease, so we wound up only having 7-9 women (well, people whose IDs for school say they are anyways- I'm androgyne.) For a sport that plays 7 people on the field at a time, that means we don't have a lot of subs, and sometimes we have none. I probably did this one of the times that we had none, which can become effectively the case when people get injured (only injured people get to sit when that happens.)
As for what I did, we're still not entirely sure. I may have focally fractured the knee. I may have some other kind of fractured the knee. I may have done something other than a tear to the cartilage- it was apparently a little wonky. I may have done a "heck if we know!" Well, we're pretty sure I did that, actually. Because whatever I did, I did it at least 2 months before I got it checked out. Kind of like the broken foot got walked on for a month before it got checked out. I recommend against doing that if you want people to be able to figure out what kind of injury you have, FYI. It confuses them, especially with injuries where you're expected to be unable to walk.
I went to the hospital. Since we weren't sure what I had and we were worried it may have been a meniscal tear, I got a wheelchair. (The hospital has a large enough pile of them that "one of the possible injuries is bad to walk on" gets you a chair. Smart of them.) People kept asking if I needed help, but as an outpatient adult with a sports injury (results of passing out doesn't get called sports injuries, even if you passed out playing sports, it seems) I got listened to when I said "No, I've got it." That was different from when I was in the hospital with the broken leg no one found. People were still really confused by the fact that I wanted to wheel myself, and they looked at me funny, but they listened when I said "Don't touch the chair; I've got it."
They didn't listen so much when I told them that pain scales were essentially useless for me. "I dunno, worse than the broken foot was just sitting there but not as bad as it was hiking? Where should a broken foot go on the scale, when I'm not doing anything on it?" Yeah. They didn't answer that. Or where a broken foot should go when I'm hiking on it. Or where a broken nose should go. Or, well, anything except that paretenintis is considered a 10. Which, um, size of blocks? Not all pain necessarily of same type? That's not enough for me to use their scale. It's just not. (Is "no pain"a 1 or a 0? WHY WOULD I BE HERE IF NO PAIN?!)
And they tried to record my "I DO NOT UNDERSTAND YOUR SCALE YOU NEED TO EXPLAIN IT WELL ENOUGH THAT I CAN USE IT NO THE FACIAL EXPRESSION THING DOESN'T HELP I CAN'T READ THOSE ARRRRGGGGHHHH YOU ARE NOT MAKING ANY EFFORT TO MAKE THIS COGNITIVELY ACCESSIBLE TO ME" as "no pain." No. I already told them two things it was between. I don't know how they could come up with no pain as a possible answer when they already knew it was worse than a broken foot. Broken feet hurt, folks. Just FYI. That's a thing. Broken bones hurting, I mean: that's kind of expected. So their "ugh just put down a number" reaction, which is completely unhelpful, was for a number that was kind of impossible.
Yeah. I think they expect everyone to be neurotypical. I also think that even if they never figured out exactly how I am neurodivergent (I'm Autistic, plus alexthymic and presumably dyspraxic, Autistic is the only one that's a cultural identity and therefore must be capitalized identity-first when referring to me,) they kind of got that I'm not neurotypical. I think neurotypical adults are at least capable of the "just make something up" thing. I sometimes can, if I have time to prepare for the fact that I'm just making something up and it's not actually important that I be accurate. Given the status doctors assign to these pain scales, I think it's important in context. (Seriously, doesn't "I'm using the wheelchair because I can't trust my own sensations of pain to tell me if I have broken bones or a meniscal tear or other major injuries, but walking hurts and that's a bad sign" kind of make it clear that these scales might not work right? But noooooo, "everyone" is able to do this, just give a number. WHAT PART OF I CAN'T DON'T THEY UNDERSTAND?!
I wasn't able to get them to just leave the thing blank with a note about "the patient is unable to use these" or something, unfortunately. Because I can't. But my mom was able to talk them into using an 8 instead of a "no pain" because she knows me and that if I'm consciously aware of the pain, it's got to be at least a 6 or 7 by typical standards. Which, um, I think is a sign of the scale being messed up? Just a bit? If my 6-7 is the same awareness of pain level as most folks 1-2? Yeah, that's a thing that needs changed. Not sure what it needs changed to, being not a doctor, but having "pain scales are cognitively inaccessible" or something like it as an option to get around the thing might be a good start...

2 comments:

  1. I flailed about (some of it literally) for half an hour at the physiotherapist's trying to put a number on her scale for my back pain. She got the facial-expressions thing for me, with a big smile, "this might be helpful". NO IT ISN'T. When I've already said I can't quantify it don't ask me to quantify it on a scale that also needs me to translate it into pictures. I made it 7, tentatively, reasoning that anything below 5 would be negligible and even 6 would be too bearable to go to the physio for, but I'm wondering to this day whether it was anywhere near the right value.

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  2. I am a Nurse ,also an Aspie. I've tried to argue with my peers on how useless the pain scale is for me and others. It's become a "thing" that is not questioned. Ugh!
    The lack of understanding is spectular. I say it hurts and they say on the scale of 1-10 how bad is it.

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