Lets talk about pain, self-injury, and being autistic. This post is going to get personal, and it’s not going to be pretty. This post contains discussion about girlie issues and self-injury, so if you don’t want to read, you have been warned. Anyway, here goes…
I have very mean lady-parts. I swear, every time they decide to go and do that thing they’re supposed to do every month (and it’s never ever every month, it’s never even predictable in the slightest, but that’s a different story), they make sure to remind me, viciously, that they would much rather exist outside my body than in peace with it. As a consequence, approximately 8 or 9 times a year, I get debilitated for several days while my uterus attempts to burn its way out of my body. And every time, I end up not being able to sleep, or function, for at least a day, usually two. (Last time, it was a whole freaking week!) I’m not looking for suggestions, or anything else to “fix” it. That’s what doctors exist for, and it’s not like I haven’t “sought help” for this before. That’s not the point of this post. The point of this post is to discuss what happens to me when I get past a 7 or 8 on this very useful pain scale, and last night, I was most certainly at a 9… I have been at the 10 before too.
When I get to a point that I’m incoherent with pain, I cry out. But more than that, I start biting. I bite my own arms, legs, whatever I can get at. It’s not a conscious decision, it’s just something that happens. Because for whatever reason, it seems to help. Not exactly help, but it’s a way for me to control the pain my body is feeling. Not all of it, of course, but some of it. I sleep in a room with pillows and stuffed animals surrounding me. There’s nothing hard near my bed. Because if there is, I would bash my head into it when this kind of pain comes around. As it is, I spent 3 hours last night sobbing uncontrollably, bashing my head backwards into my pillows, biting my arms, and contorting my body. Why? Because I was in uncontrollable pain, completely overloaded, my body was desperately searching for some way to fix it. I woke up this morning and there were still bite-marks on my arms. I am not proud of this. I really don’t like that I hurt myself when I’m in pain. But that’s what it is.
And as I was wide awake most of the night, attempting to relax and convince my body that it really didn’t, in fact, want my uterus to crawl out of my abdomen, but that it wanted to sleep instead (and no, the pain meds with sleep-inducing drugs did absolutely nothing), and leaving bite-marks all over my arms, and stimming and flapping my arms and legs, and bashing my head against my pillows, I was also, off and on, pondering why. It’s not a controllable thing, you see. I know I shouldn’t bite myself. I know I shouldn’t flap my feet until I feel my ankle joints pop. I know my arms aren’t supposed to bend that way. I know my head would do better if it weren’t bashed (though at least I know enough to bash into pillows). But this is my brain’s way of regulating extreme discomfort.
When I’m mildly uncomfortable, I often bite my thumb or my fingers. Or I dig my nails into my palm or my other hand or my arm. I know enough not to do too much, but it’s a coping mechanism. A way for me to control the pain, to help center my body and figure out what is going on. It’s a self-regulatory mechanism. When I’m mildly uncomfortable, I can control just exactly how much I do, so that I don’t permanently (or even temporarily) harm myself. But when I’m in extreme discomfort, those filters, which I have carefully built up over many years, are overloaded. I can’t control my out-of-sync body, and I can’t control my coping mechanisms. If I were less verbal (under normal circumstances), had I been less lucky in my education, what happened last night would probably have seen me put into a full-body restraint, placed there to protect me from myself. And last night was not an exception.
Being autistic means my brain processes signals from my body differently. I process pain differently from most people as well, as evidenced from the fact that I rarely even notice pain until it’s debilitating. But when I spend 3 or 4 hours awake in the middle of the night, in so much pain I can’t find words or think or do anything other than dig my teeth into my arm in the hopes of feeling something or grasping something, or finding any way out of the hell I’m experiencing, the last thing on my mind is “self-injury”. For me, it isn’t a deliberate act of communication. It’s not a cry for help. It’s not even something deeply personal and emotional for myself. It’s my body’s way of viscerally attempting to mask the incredible amounts of pain that it can’t control. In a sense, it might fall under the “behavior is communication” – I’m in more pain that I can handle, and therefore I am behaving this way. But in my opinion, to be communication, it has to be deliberate. And this is not deliberate. It isn’t a choice. It’s the only thing I can do.
Everyone has a different take on “self-injury”. This is just one of my experiences with it. I can’t honestly say it’s my only experience, but it is certainly one that happens quite often. So what is my motive in sharing this? Well, several things. First off, it’s a reminder that just because I might seem “high functioning” at first glance (I’m a PhD candidate after all), it’s not the whole story. Secondly, I’ve shared this because I think it is important to think about how different brains work. I have no idea what motivates others (autistic or not) to cause physical harm to themselves. What is true for me is just that: true for me. But I can imagine that others may have similar responses to pain or discomfort. A large part of my autism is sensory-based. My brain doesn’t deal with sensory signals well, and pain is one that it is either “on” or “off”, there’s no real middle ground. My filters register nearly everything as “off”, but if it flips to “on”, I get overloaded. Add a bit of stress, or an auditory trigger (our bathroom fan just got replaced and it is loud and my roommate insists that it stay on all the time), and my brain gives up. I no longer have control over my body. My carefully built-up filters don’t work anymore. And all bets are off.
And on that note, it’s time for me to go to sleep. Maybe I’ll even get to rest tonight.
p.s. there’ll be a happy post soon too. I promise. when I get the spoons together to write it. 🙂