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.
So weird. Today after not hearing from you in years I just felt like reading Bullying
Teacher. Looking to see if you had anything new I checked your Amazon page and saw the blog links. Read them and was like Bingo…..
The universe is a little freaky because I have been going through some very parallel stuff. Though blessedly no Autism nor PTSD to deal with.
Bottom line I am sorry for your hell, miss your writing, but get it and your struggles and your journey has born fruit in good information for myself.
I hope your are able to move forward. I will hope that for you.
*hug* Thank you, cat, it’s really nice to hear from you. I hope life is treating you kindly.
I’m doing better, I just haven’t felt like showing up just yet, if that makes sense. I started my ADHD treatment, and it has been transformative. But it’s only a month in, and they just raised my dose to being allowed 3 times a day, meaning I get 12 hours of functioning instead of 8. I’m starting to see the world as not complete overwhelm (did you know that most people do all their daily chores in a handful of hours instead of the full 24 hours it takes me? @[email protected]) Like, I had no clue how much time was really in a day until I started basic ADHD treatment, and I’m just trying to know myself all over again.
I’m actually working on a mini interactive novel based on a little Monster Bash madlibs I made, one with logic while I wait to see how these meds are going to give me back my life. I just want to have enough of it done before I share it with readers. I don’t want to jump into a novel right now, because I’m still wary that my language skills might be weird as I get used to the meds. But I think in a month or so, I should have a steady idea of my limits and abilities and be able to write, not just spend all my time doing basic household/life things, you know? It’s funny; we like to think that we can will our way through life, but when the chemistry isn’t there, isn’t sparking, nope. The body just doesn’t work. Learning to come to terms with that has been tough.
I just discovered your books having read the first in the Hellcat series and I am in love. I hope you are doing well and I do plan on devouring more of your tasty stories.
I’m in love with the Paranormal Academy for Troubled Boys, but I’ve got a couple of questions: I read the original version of Demon Arms, and read the two new updated (…episodes,, I think they’re called??). When is the next update/serial coming out, and where I might be able to read it? I’d absolutely love to become a member and be able to read them as they come out, but, unfortunately, therapy is f*cking expensive, as well as medicine. I can’t justify getting a membership to a favorite author, then worry later about paying for sh*t (even if it’s only $5). I’m really glad you’re doin’ better!
Therapy is fucking expensive and it’s been so difficult to get since covid; I feel ya.
Let’s see… updates: No clue. My brain is broken. My adrenals broke. Currently I can barely read a screen. I’m not giving up, things just don’t care about time though atm. As for where to read, when I do release it’ll be on the website first for subscribers, then when the book is ready — and I can handle the physical/emotional stress of the publishing process — it will become available in KU.
Hope you’re doing well and that you get the affordable healthcare you need — because healthcare is a human right, and anyone who claims otherwise is a fucking sociopath.