On pain tolerance and neurodivergence.

TW: medical neglect

I've read from a few sources that it was believed for a long time that autistic people don't feel pain, or feel it at far lower levels than neurotypical people. As a neurodivergent person with multiple chronic pain issues that have brought me to the Emergency Department on many occasions, I've experienced this personally. But it's not that my Emergency staff knew I was neurodivergent and therefore assumed I wasn't feeling pain, it was that my neurodivergent, accustomed to a certain level of daily pain response is so different than a healthy neurotypical person's that Emergency staff don't recognize me as a person in pain. It also doesn't help that I'm a cisgender (that means the outward, social expression of my gender matches my sex/genitalia), AFAB (that's "assigned female at birth") person, women's pain is traditionally downplayed even when we're incoherently screaming, so I'm basically fucked.

Let's start with the infamous pain scale. It became the biggest metric of my life 10 years ago, and I very quickly had to figure out how to use it to convey my pain levels as accurately as possible. For the record, your doctor will immediately discount your pain if you report it as an "11" while displaying zero stress symptoms. Also, that's about the most neurotypical thing you can do.

Here's my pain scale: my daily pain levels fluctuate between 2 and 4, and that's medicated, they'd be an easy 8 unmedicated. 5-6 is about where I was from October-hip surgery, painful but I can generally handle it myself and minimally function. 7 is where I call the doctor, 8 is where I head to Emergency.

For comparison, 8 is usually compared to unmedicated childbirth.

There's also a "my 10," which is not the "screaming uncontrollably and unable to communicate" that the 10 is officially reserved for, but basically your absolute limit pain, which for me rounds out to around an official 9.

I would like to point out that this is the pain scale of a chronic pain patient, which is widely recognized to be completely different from that of a healthy person's scale. My "gosh, maybe I need help with this" is most people's "writhing and screaming uncontrollably." Thing is, that doesn't mean that my pain is any less stressful to my body than the writhing and screaming neurotypical's, it just means that I'm not writhing and screaming.

Okay, here's the problem: at 7, I can't mask my face or voice anymore. Both go flat. I'm told at this point my complexion is absolutely corpse-like, and the stress in my voice makes me sound bitchy, and it doesn't help that I can only manage short responses. But when I'm in the ED, I can pull it together enough to answer questions thoroughly, strike one against me for actually being in the kind of pain I report. Never mind that I'm in a hypertensive emergency thanks to the pain, and the blood pressure monitor is going bonkers.

Why? Yeah, I'm this kind of autistic, I sat back and figured it out one day - I'm not emotionally connected to my pain. People don't scream because of the pain itself, they scream because they're terrified of what's happening to them. Me? I apologize to my care team in advance, because I know that if I'm going to outwardly express my pain, it'll be with expletives. I'm sure you're not surprised.

I have the benefit of knowing full well what's going on in my body, I've had a whole lot of imaging done. I just saw my bones yesterday, even, including the new titanium one. I know the difference between nerve pain and muscle pain, I understand where pain originates from, and I know what I can handle and what I need help with. This makes me the opposite of a "drug seeker," by the way. I take Naltrexone daily for fuck's sake, you can't even give me opioids.

Another fun neurodivergent trait is that we do emergency situations really well. Sure, we're anxious, depressed messes when everything's going great, but a disaster happens? We're locked the fuck in until it's over. That's how I can muster full, detailed answers to doctor's questions during my worst pain, I'm in mind over matter mode, and the matter is my malfunctioning body that we are now focused on fixing. Or at least I am, if I can convince my doctor that the fact that I'm even there means it's serious. They're not used to patients like me, with the level of body awareness that I have, or the level of pain familiarity or neurodivergence.

Why am I writing this? Hopefully it helps neurotypical ED workers understand their neurodivergent patients better, so we don't get dismissed, and get more comprehensive care. And hopefully it finds other patients like me, because this is a very lonely feeling when you're half naked on an ED gurney.