Thread by @Deezovariez

When you are #ADHD/#autistic & have chronic pain, it's like the worst of all worlds. Pain, especially long term pain, can make life with ADHD/A miserable. Pain takes up your mental resources for sensory management, leaving your body a raw nerve. It eats away at your concentration

I can get distracted in an empty room, just by thinking my own thoughts. But when pain is involved it's like someone is tugging at me & trying to talk to me non-stop & my ability to focus on something (no matter how important) is severely impaired. I'm using all my cope on pain

Drs have largely been ordered to abandon pain patients, to discourage, discredit & smear them to avoid liability, so the advice we often get is stuff like "try mindfulness" (while offering zero resources) or "learn to live with it." So you do- by shoving everything else aside

I've always been ADHD & autistic, sensory issues, issues w focus, hyperactivity, have always been part of my life. Its always been a full time job to manage, but I did okay until menstruation began, endometriosis began to flare up, & I had to throw my energy into managing pain

I have vivid memories of horrible physical discomfort, the agony of trying to sleep as a kid w restless leg syndrome & a delayed sleep phase, but overall it was manageable (even if I used unsafe methods like wrapping limbs tightly). But after endo it was almost always unbearable

One doctor told me I had to just stop thinking about, talking about, or reacting to pain. I dunno if that's something neurotypical people can do, but for me any tiny input- noise, temperature, touch, texture, etc- is like a constant alarm going off. My body reacts violently to it

If I'm trying to work on a project, even on a hyperfocus, there's a non-stop pull towards noticing pain, like any other sensory issue. With autism & ADHD, I take in far more sensory information than a neurotypical, *and* I have less capacity to regulate those signals in my brain

I think a fair few ADHD/autistic folks cope w pain the same way I do- dissociation. There isn't much else I can do. I exercise regularly (or too much sometimes), breathing exercises are about as ingrained in me as breathing itself, so all I can do is go somewhere else in my mind

CW: suicide

But if you tell a doctor that you manage your untreated pain (and associated sensory overload) by dissociating, that's considered a red flag for potential substance use disorder. Like, no buddy, if I had drugs I wouldn't have to rely on dissociation to avoid suicide

It's despicable that anyone with a mental health diagnosis is considered impervious to physical pain. We cannot have pain, it has to be our hysterical lady brains (this dismissal often happens to women & people perceived as women in medical settings)

It's funny bc certain "therapies" for autism emphasize awareness of the body, but when autistic people are aware of our bodies, aware of our pain, we are taught to minimize & ignore what our bodies are telling us. I guess body awareness is just "don't make the NTs nervous"

I have to be constantly aware of my body in public, so I can minimize behaviors that lead NTs to mistreat me, but I also have to somehow shut that awareness down when it comes to intense physical pain. I can't even rock or verbally stim to introduce other sensations to focus on

The most frustrating thing is that doctors and researchers are already trying to position pain as a sensory issue, but their takeaway isn't "we need to treat the pain," it's "we need to treat pain the same way we treat other sensory issues- by gaslighting the patient into denial"

Or worse, "desensitization" where chronic pain patients (even teenagers!) are coerced into extreme exercise programs while being mentally abused by trusted authority figures until they learn to dissociate from their own reality. That's pain management post "opioid crisis"

It circles back around to the inherent violence of places like the Judge Rotenberg Center, which tortures autistic people in an attempt to abuse the autism out of them. Aversives don't treat or cure anything, they simply abuse vulnerable people into shutting up about their needs

It's the height of cruelty for doctors and researchers to suggest that ADHD/autistic people need to build a better connection between our minds & bodies, & then tell us that the things our bodies are saying are not "real" (meaning considered real in the way a NT person's pain is)

With nearly any mental health dx (esp if you're poor, a woman, Black, Indigenous, &/or Latinx), Drs often refuse to do testing, put it off, send you to physical therapy, send you to CBT, outright tell you it's not real w zero proof, anything to avoid the liability of treatment

So you've got this constant pain alarm going off in your head, forcing you into rest and missing crucial life experiences, impairing your ability to work or to even finish household tasks, and when you ask for help you're told that this intense experience is essentially fiction