Disability visibility and self ableism
So, this might not be of much interest to those who are just here to read, but it’s something of importance to me because it relates to who I am as a writer. Especially during these last 6 years of illness.
I was recently diagnosed with ADHD and autism, but before that diagnosis was 6 years of torment, and before that a lifetime of PTSD. You’re only seeing this website because 6 years ago I became so sick and bedbound, I decided to start my own business and self publish. I have been ill this entire time — but my skills as a writer have fluctuated greatly, seeing these sharp declines and improvements. This, on learning about my autism, now makes sense.
It wasn’t brain damage and repair; instead these language fluctuations are associated with autistic burnout. Now, the allergies and dopamine drops I was experiencing aren’t necessarily autistic burnout, so much as because I’m autistic, stress on my body can lead to certain symptoms. So having a chronic illness such as being allergic to mold and unable to handle the scents of certain things can result in autistic burnout.
Why is this important? I have psychologically kicked my ass for years now, waiting for my ‘brain to come back’ so that I can allow myself to write. As a result, I internalized my ability to write as part of my self worth, internalizing this very normal part of my existence — the part where stress breaks me and my brain loses language skills for a period time — and saw it as a character flaw, a moral failing, failing at being a person, instead of part of who I am. This vicious, cruel, internal bullshit I spew at myself is ableism. Instead of accepting myself for who I am, I was being an asshole to myself — not making anything better, might I add — and just being miserable.
This is also connected to the perfectionist problem I have. Because I’m waiting to be ‘perfect’ before I allow myself to write. Aka, I am the biggest dick to myself for nonsensical reasons to protect myself from what I saw as inevitable failure. What failure? Who the fuck knows. I started a business sicker than I have been in my entire life; I have no clue why I thought I could fail when at this place. But I managed to get a little bit better, and I saw any return to ‘the worst’ as failure. Fun.
I am now aware of this, and working on it. Which is why I’m also writing again. And this will be a process, because I’m still angry with myself that my writing is not at a level or ease that I know it could be, and therefore my brain has decided it *should* be. But whatever, until I get a therapist, this is where I’m at on this topic. I need to write when my brain will let me write, even if it’s total shit, because if I don’t, I’m judging myself for this very normal autistic trait I have of losing language skills when I’m ill. I don’t get to do that to myself — I’m bad enough without being that level of hateful over something I have no actual control over. Autism is me. That’s it. Time to fucking love it instead of this knee jerk hate fest.
If I were a scientist–which I am not, but my brain would like to be one once it grows up >_> — I would love to point out all the correlations I have found with autistic burnout and low dopamine. These loss of language skills are also connected to low dopamine. Stress of any kind is connected to inflammation, and chronic stress lowers dopamine, leading to cognition, memory, motivation, emotional regulation and impulse control losses. My multiple chemical sensitivity could be just as easily explained as how my brain processes scent because of autism, leading to what feels like screaming in my head, and pain through my entire face over certain scents. The fact that I become more ‘neurotic’ — which is really hyper systematizing — when I am ill, is an autistic trait growing more extreme in correlation to inflammation. My agitated tics show up during sensory overload and illness — inflammation exacerbates autism, and potentially it is that drop in dopamine which is the trigger.
I have not found anything online on how to cure/treat autistic burnout outside of ‘give it time,’ but I suspect if they instead started helping to improve dopamine levels and support adrenals, autistic burnout would not disrupt the lives of so many autistics, disruptions that can last for years for some.
This shit needs to be studied, but I am not a scientist. I’m just someone trying to crawl back into my life after so many years of exhaustion and illness. I am also someone who is trying to come to terms with my disability instead of ignoring it, and only showing up on my ‘good’ days, which have been so damn few that I haven’t been showing up at all for months at a time. I need to deal with this and accept my situation. I designed and built a fucking clean room to overcome all these immune problems and multiple chemical sensitivity, and for some reason I thought I could just pretend none of it even happened; I’m living in a bubble pretending I’m not disabled, and no, that’s not dealing with anything.
I’m trying, babes. I am fallible and broken and I try every day with subpar results, but I’m still trying. I only like to be seen when I don’t have to struggle to do the most basic of things, but that just leads to complete isolation and this illusion of how life is for someone like me who is disabled. They talk about disability visibility, but honestly, if I keep hiding away, I become the reason I’m erased in this really fucked up, sociopathic world that only wants to show the most beautiful, idyllic, abled among us. I have never lived in that lie of a world — I have never wanted to — but for some reason I still managed to contribute to the illusion by not showing up when shit gets so damn difficult.
So here I am. Tired. All the time I am tired and I don’t like to talk about it. But I’m still here.