chronicbitchsyndrome - Tumblr blog

[chronicbitchsyndrome]

[chronicbitchsyndrome]

late diagnoses are also literally The Only Option if you happened to be raised by a family whose approach to medical care was lacking, at best.

i was diagnosed with autism and in middlingly-intensive at-home therapy for about ten years of my life, and in that time, i pushed for an adhd diagnosis over and over again. i failed multiple years of school, was grounded for multiple years at a time (this was abuse yeah but it was directly related to my "lack of motivation"), spent like six months without brushing my teeth at one point--it was fucking BAD. my at-home therapist repeatedly pushed for an adhd diagnosis during sessions, and i was amenable, but my mom refused.

i never got diagnosed because my mom "didn't believe i had adhd" (based on nothing but general vibes) and refused to allow me to get tested to begin with. so now my only option is to try to go through the adult testing process.

there's a ton of people who've been suffering our whole lives and know damn well why, but can't do anything about it til adulthood. (and ofc our place in the culture war is being rhetorically painted over as malingerers, because we dare to know what would help us before a psychiatrist bestows their wisdom lol.)

I fucking knew it, I SAID it: they're making ADHD people the next culture war targets. They will 'just ask questions' until we lose every scrap of ground we've gained in the last decade and more. We may not quite inspire the same level of hatred as a sexual minority, but we can very easily be made to inspire disdain and that also works.

They will strip us of our accomodations and our medications and try to stifle any sense of shared identity, and if that kills some of us, oh well. So long as it fuels another outrage cycle, fine.

So many of the tropes they've been using on trans people work extremely well on ADHD people too! "There are too many of these people suddenly! It must be a fad! It spreads through friend groups! And online! People are going private for diagnoses and that's bad! They are using pOwERfUl medical interventions and we think it's freaky!"

I saw the first ripples of this in terf circles about two years ago. And of course it's spread.

6% of British ADHD people lost their jobs in the last year thanks to the meds shortage. SIX PER CENT! And that just made these ghouls go "ooh, tasty, what else can we do?"

Recently an 'expert' was on the BBC saying people see ADHD diagnosis as a "golden ticket." Laurence Fox has been ranting that the condition doesn't exist and threatening "'you won't poison my child's body [with ADHD meds] against my consent"

People need to be aware this is going to get worse. Maybe, if we're lucky, it won't get really bad. But it's going to get worse than it is now.

[chronicbitchsyndrome]

wondering whether i should fill my prednisone prescription or not

last time i went on prednisone to shrink my tonsils (last month), i got an ear infection at the end of the taper. i talked to the prescribing doc and he said it shouldn't fuck with my immune system, but he also said that's because i'm "young and healthy," and like. i sure am not healthy. i am in this clinic because i have tonsilitis to the point that i can barely breathe for the third time since february. but okay.

[chronicbitchsyndrome]

yep.

you'll get different answers from different people on that, and many of them will be extremely vitriolic and even actively bigoted toward mentally disabled people. there's a lot of emotional manipulation and lateral ableism happening in this discourse, and if you're going to wade into it, you should be on watch for these things and prepared to emotionally handle the experience of encountering them.

you can check under the cripplepunk tag on my blog for some arguments i've made on the topic. you can also read opposing arguments from under bloggers on this site, and i'd encourage you to--don't just take my word as gospel.

disabled people who are lifelong, permanent dependents, i love you. you are my friends and my lovers and my siblings and you are me and i am you and i love you.

i'm really despondent sometimes over the ways society sees us. how conservatives see us as burdens and drains on society, yes, and also how liberals mock our lives, how the idea of being an adult dependent is seen solely as the result of poor life choices, how everyone all across the political spectrum sees things like "getting an allowance from your spouse" and "relying on one person for housing" as cause for mockery, jokes to make, nothing but a conceptual stick with which to beat people into performing well in work and school. still others see us as childish, as pitiable, perhaps not as worthy of mockery but definitely not as worthy of being treated as a social equal, never someone you could invite into your social spheres and make an effort to include--they're just not independent, no offense to them, it just makes them so childish, i can't have an adult friendship with them.

but we persist anyway. we're here. i'm lucky to love the people i'm dependent on, i'm lucky that they respect me as a person and would never leverage their power over me, i'm lucky that they're willing to constantly self-check to make sure they're not accidentally using that power. i hope to g-d you're lucky in the same ways, because i love you. and if you're not, i love you. i'm holding your hand and i'm standing with you and i'm going to try to make a better world for both of us.

[chronicbitchsyndrome]

speaking of your intro post (differant anon tho) what does self induced visions mean? haven't heard that term before

i'm in favor of being psychotic if you wanna be and i'm in favor of doing drugs if you wanna and im in favor of doing anything else you wanna do to yourself forever

[chronicbitchsyndrome]

hi what does the cockroach part of your intro post mean?? sorry

it means i won't fucking die and if you try to kill me i'll get into your pantry and make all your rice unusable

[chronicbitchsyndrome]

[chronicbitchsyndrome]

[chronicbitchsyndrome]

disabled people who are lifelong, permanent dependents, i love you. you are my friends and my lovers and my siblings and you are me and i am you and i love you.

i'm really despondent sometimes over the ways society sees us. how conservatives see us as burdens and drains on society, yes, and also how liberals mock our lives, how the idea of being an adult dependent is seen solely as the result of poor life choices, how everyone all across the political spectrum sees things like "getting an allowance from your spouse" and "relying on one person for housing" as cause for mockery, jokes to make, nothing but a conceptual stick with which to beat people into performing well in work and school. still others see us as childish, as pitiable, perhaps not as worthy of mockery but definitely not as worthy of being treated as a social equal, never someone you could invite into your social spheres and make an effort to include--they're just not independent, no offense to them, it just makes them so childish, i can't have an adult friendship with them.

but we persist anyway. we're here. i'm lucky to love the people i'm dependent on, i'm lucky that they respect me as a person and would never leverage their power over me, i'm lucky that they're willing to constantly self-check to make sure they're not accidentally using that power. i hope to g-d you're lucky in the same ways, because i love you. and if you're not, i love you. i'm holding your hand and i'm standing with you and i'm going to try to make a better world for both of us.

[chronicbitchsyndrome]

I'm writing a research paper on how having a feeding tube impacts a person's social life, but most of the research that's already out there focuses on how a person's feeding tube impacts their family's/caretaker's life. If you:

have ever used a feeding tube,

are 18 or older,

are an american,

would like to share your experience of having a feeding tube, and

have half an hour or so free before April 27,

please dm me so we can chat! quick preemptive faq:

I do not need to know your name, I would be using a pseudonym for the paper

I do need to know your age, or at least an age range

I'm probably only going to talk to a couple people

Our conversation would be typed, not oral

I know "research paper" makes it sound high stakes but it would really be just a chill casual conversation

[chronicbitchsyndrome]

sometimes, when someone is criticizing the stay-at-home-wife movement being sold to young women by conservatives, it loses focus on the "selling you a repressive and authoritarian worldview" point and slides into... well... implicitly leaving disabled people to die.

and what i mean by that is, it's all well and good to say you should do everything in your power to make sure you're not financially dependent on another person... but what if "everything in your power" is "nothing?"

what if how society is structured means you have absolutely no choice but to be financially dependent on another person? what if it's that, or simply die? this is the choice disabled people are faced with. not even uncommonly... frequently. people who need full-time carers, or who have very expensive medication and assistive tech needs, or people who simply can't work in the current job structure, often have the choice of... well... find someone to be financially dependent on, or face a slow, painful death, usually without housing. even if you're lucky enough to get on a fixed income, it's never enough to even make monthly rent, and that's not counting the extra costs of food, toiletries, medicine...

in fact, a lot of disabled people (certainly notably women, but absolutely not limited to, and in fact i see this happen to trans men over and over again, and i've lost a dear transmasc friend because of this) are funneled into being stay-at-home parents and homemakers, forced to do all of the domestic labor and childcare in exchange for a roof over their head and access to their medications/assistive tech, and isolated in all the same ways tradwives are isolated. in fact, this even happens with leftist partners/parents. all the time, i see disabled people disappear from public life entirely, lose contact with all their friends, and consign themselves to a life of cleaning up after someone while struggling to handle their own health needs, even having their disabilities exacerbated and their lifespans shortened by the amount of domestic labor they're required to do.

but it isn't a choice... it can't be fixed by focusing on academia or work... and it's not due to buying into conservative propaganda. all i ask is, please remember this, and please never leave us out of these discussions.

[chronicbitchsyndrome]

i wrote this in the notes of another post originally and am copy + pasting it here because im right but "tell the cops nothing, tell the doctors everything" is such a stupid ass fucking abled take. doctors engage in policing idk how to explain to yall that some people cannot in fact just tell doctors everything without it putting them at risk

like im not gonna go into the myriad of ways this is bs but like a quick example is i cant tell my doctors about my substance use issues because if i get that listed on my medical records it will actively endanger me. It will impact how I'm treated in emergency situations and will get me labeled as "drug seeking" when i try to get other issues dealt with.

i dont say this to scare people but because this is actually important information for people to have. if a medical professional claims this isnt an issue, they are NOT "one of the good ones". they are either straight up lying or theyre utterly unaware, which is frankly not better. doctors are cops. never forget it

like YES tell ur doctor abt being sexually active but stop saying "tell the cops nothing and the doctor everything" before i start killing in cold blood

[chronicbitchsyndrome]

It's so tempting when doctors are like "actually, [outdated and flat out wrong misinfo]" to pull out a six inch thick stack of scientific studies and be like "ah, so you disagree with the findings of Dr Hurglerboburgler et al of the Institute of They Know Everything About This Diagnosis?"

Alas, if I were to do that, I'd get "patient capable of advocating for themself that knows doctors are full of bullshit - kill on sight" put in my chart. Sad!

[chronicbitchsyndrome]

a little diary about trying to find a middle ground between being spiritual and being a schizophrenic

[chronicbitchsyndrome]

I don't think I've ever met a disabled person who didn't have the idea of themselves as an abled person haunting them. That is the yardstick by which our many of our successes are measured, and our failures pitied.

It's great that you achieved that! If only you didn't have your disability holding you back, imagine what you could do!

It's too bad that you weren't able to do it. If you didn't have your disability, you may have been able to.

You start doing it yourself, too, comparing everything that you can do to what you could have done if you just didn't weren't disabled. Seeing yourself as an inferior version of yourself.

But we aren't inferior versions of ourselves. We are the only us who exists. There is not an abled version of us waiting to outshine us. We should not have to live in the shadow of someone who doesn't exist.

[chronicbitchsyndrome]

a bottom-tier autistic experience is being told throughout your entire childhood that you are just an overthinker when it comes to social situations and later finding out that your friends did, in fact, hate being around you and tried to communicate that through weird little hints

[chronicbitchsyndrome]

yeah i just wanna explicitly acknowledge this on the post tbh, normally i'm a bit more careful about avoiding us-centric language and core assumptions when i'm writing for a larger audience outside of just my followers, but i genuinely did not expect this post to leave a small circle of like 500 people that already follow my blog, as i'm used to anything i write about disease safety & public life not really getting any attention. my bad on this one, but yeah this post is by a usamerican writing about usamerican policy and shouldn't leave that implied.

so: masking: good, unequivocally. please mask and please educate others on why they should mask to make the world safer for immune compromised people to participate in.

however: masking is not my policy focus and it shouldn't be yours, either. masking is a very good mitigation against droplet-born illnesses and a slightly less effective (but still very good) mitigation against airborne illnesses, but its place in the pyramid of mitigation demands is pretty low, for several reasons:

it's an individual mitigation, not a systemic one. the best mitigations to make public life more accessible affect everyone without distributing the majority of the effort among individuals (who may not be able to comply, may not have access to education on how to comply, or may be actively malicious).

it's a post-hoc mitigation, or to put it another way, it's a band-aid over the underlying problem. even if it was possible to enforce, universal masking still wouldn't address the underlying problem that it is dangerous for sick people and immune compromised people to be in the same public locations to begin with. this is a solvable problem! we have created the societal conditions for this problem!

here are my policy focuses:

upgraded air filtration and ventilation systems for all public buildings. appropriate ventilation should be just as bog-standard as appropriately clean running water. an indoor venue without a ventilation system capable of performing 5 complete air changes per hour should be like encountering a public restroom without any sinks or hand sanitizer stations whatsoever.

enforced paid sick leave for all employees until 3-5 days without symptoms. the vast majority of respiratory and food-borne illnesses circulate through industry sectors where employees come into work while experiencing symptoms. a taco bell worker should never be making food while experiencing strep throat symptoms, even without a strep diagnosis.

enforced virtual schooling options for sick students. the other vast majority of respiratory and food-borne illnesses circulate through schools. the proximity of so many kids and teenagers together indoors (with little to no proper ventilation and high levels of physical activity) means that if even one person comes to school sick, hundreds will be infected in the following few days. those students will most likely infect their parents as well. allowing students to complete all readings and coursework through sites like blackboard or compass while sick will cut down massively on disease transmission.

accessible testing for everyone. not just for COVID; if there's a test for any contagious illness capable of being performed outside of lab conditions, there should be a regulated option for performing that test at home (similar to COVID rapid tests). if a test can only be performed under lab conditions, there should be a government-subsidized program to provide free of charge testing to anyone who needs it, through urgent cares and pharmacies.

the last thing to note is that these things stack; upgraded ventilation systems in all public buildings mean that students and employees get sick less often to begin with, making it less burdensome for students and employees to be absent due to sickness, and making it more likely that sick individuals will choose to stay home themselves (since it's not so costly for them).

masking is great! keep masking! please use masking as a rhetorical "this is what we can do as individuals to make public life safer while we're pushing for drastic policy changes," and don't get complacent in either direction--don't assume that masking is all you need to do or an acceptable forever-solution, and equally, don't fall prey to thinking that pushing for policy change "makes up" for not masking in public. it's not a game with scores and sides; masking is a material thing you can do to help the individual people you interact with one by one, and policy changes are what's going to make the entirety of public life safer for all immune compromised people.