#like…im not a doctor…but a diagnoses might be there for something
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nico-di-genova · 5 months ago
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I have more Rossi lore :)
Lost to James at a cornhole game one time, and proceeded to order professional cornhole gear with the correct dimensions and everything so he could practice properly, and thus ensure he would remain the number one victor at all times for the rest of time. Joked about going pro, but I don’t think it was fully a joke tbh, he probably fully thinks he could.
Was once denied entry to a steakhouse in Detroit, despite the fact he had reservations. Says he “pulled up in an Audi (weird flex but okay) in dark wash jeans and a sweater” and was told he couldn’t come in because he didn’t have a collared shirt. Later, three of his friends sent him photos eating at this same steakhouse. They were t-shirts and sneakers.
Alex “loves to sleep in” according to James. Didn’t want to wake up early to care for his plants so he spent a (assumedly substantial) undisclosed amount of money on an electric controller that takes care of his plants and comes on at 5:30 in the morning. You will not catch him missing out on his beauty sleep apparently.
Doesn’t like when people are bubbly and talkative at restaurants, hostesses and waiters specifically. Being social stresses him out, he doesn’t like it, don’t try to talk to James about ketchup while Alex is trying to order a Diet Coke, he will become annoyed and stressed because he “waited his turn” to speak and things aren’t going right. Clearly he prescribes to rigid social cues and structures and is thus annoyed when these are not followed. Don’t piss him off, don’t be nice apparently, this is a serious problem for him. (He’s so real for this tbh. I too become stressed annoyed and overwhelmed when waiters are overly talkative and I no longer have an established script to follow. Not their fault to be clear, I just don’t know how to process that.)
Went nonverbal once at the start of a podcast episode and was asked by James “is this a no talking day”. Alex was too involved in eating his gold fish to give more than one word answers. (Also relatable.)
Also, this whole interaction between him and Tim:
Tim: I’m over at Alex’s and he’s struggling to open this one package. He stops in the middle of opening the box, and he just looks out the window and goes, “I need to trim my roses”. And then he just- he returns to the- he gets the box open and then doesn’t even take time to put shoes on, goes out in his socks and trims his roses. Like, we were in the middle of a conversation…
Alex: the reason why- I was using my rose scissors to open the package, so it reminded me.
He’s too relatable I fear. Antisocial, frequently nonverbal, easily sidetracked king.
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sollucets · 6 months ago
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hi everyone :’) i havent been on tumblr much lately because i am 1) not watching anything and 2) still dealing with the effects of a bunch of fun medical stuff! i am doing ok but my body hates me so so so much lately. i have the energy and ability(?) to do only a few very specific things right now (play elden ring, let youtube forcefeed me kpop videos, languish) and that does not include watch show or make gif or even write no matter how much i might want to. so. this is how it is haha. miss u guys
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xoshepard · 6 months ago
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i've been walking on the treadmill every day this week thanks to my brain currently doesn't hate me and being remote makes it much easier to do shit that's not working and commuting, and i actually jogged last night and it felt good and i wasn't forcing myself i just wanted to... finally back to 2016-2017 tahirah who was motivated enough to get up and jog every morning
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letthebookbegin · 2 years ago
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#nothing like being in varying states of pain for a few years - sometimes less#sometimes more but always there - and being too exhausted to go to a doctor about it bc everyone around you says you just need to do yoga &#the only way ur job will accommodate is by giving u the less staffed late shift so u can go in the morning and ur so exhausted youd rather#just deal eith the pain like u already have been doing for years#to moving to a job that actually allows u to leave early for medical reasons if you can get the essentials done#then phoning the gp with hope & motivation for the first time in a long time#and being told lol no appointments left until july#i had hope for once i really did 🥲 my friend is a pt & said i might have fibromyalgia and i really really dont want it to be that bc that#means i have a chronic illness with no cure but i looked it up and just. every single symptom was a check for me#and i started thinking if i do have it ill have it whether im diagnosed or not & if i dont then thats good to know too? & psyched myself up#for the phone call and. ugh it really hit me#she said to do their online service. tried and it said no appointments available. tried nhs online. it said make an appointment with ur gp#within the next few days 🥲 back to giving up and just bearing the pain and never mentioning it bc i'll just get told it's my own fault bc#i didnt go yoga ig#just needed to rant into the void for a bit sigh#time to go back into work i guess#*#UGH I JUST GOT MY PERIOD TOO#also like. this isn't to say i do have chronic pain it could be something easily solved#and id be delighted if it was#but i hate how the people around me trivialise it like. it's not normal to have intense pain and stiffness from sitting down/standing for#the duration of one train stop ok it's not. it's not normal to feel sharp jolts of pain through my body every time i cough or sneeze.#every part of my body aches! literally from my head to my toes! they dont do toe yoga!#okay enough back into the fray
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girl-bateman · 5 months ago
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Blood-work came back fine which either means I really do have a mysterious deadly illness OR its my mental health that's fucking up my physical health. Now my dilemma for my upcoming appointment .. do I mention how neurotically devastated I've been feeling these last months, knowing the doctor might be relieved to blame it all on hysteria instead of doing more testing ? Or do I just... not say anything about that.. lol
#i feel very very uncomfortable referring to diagnoses or specific mental health conditions that i cannot confirm i have (!)#but if this is indeed all linked to that stuff that happened 4months ago#which hypothetically would be linked to some unpleasantness that idk about from the past#then yes. my physical symptoms could technically be explained by a triggered trauma response#made worse by anxiety stress hightened cortisol levels etc etc#HOWEVER lots of doctors tend to dismiss women abt physical symptoms in favour of blaming mental health issues#and i dont want to give them any reason to do that in case i really am sick fr (as in dying lol)#bit then again i kinda am hysterical 👍#im relieved my friends have been so gentle with me abt this but it kinda makes it harder to have a reference point for how insane/normal#my thoughts and reflections are. bc they're just doing that empathetic listening thing. not rly saying what THEY think u know#and dont get me wrong! thats prob the right call! but for once id just like for someone to be like#'obviously u were xx' ??? bc they just keep saying they dont wanna speculate. and i dont either! but im going mad trying to find anwsers#and ig i just want someone to tell me what i should think and do and whats normal and whats not#like??? is it rational for me to think something bad happened or am i being delusional. evil and paranoid ???#am i in denial for believing that nothing might have happened at all and that there might be other things to explain whats going on ??#i just want to know what the normal ppl think bc i feel very far from normal rn#and i can tell my friends are having so many opinions that they are leaving unsaid#which low key is not helping the paranoia BUT once again i know that they are doing it out of kindness and sensitivity 🙏💓#i love my friends and this is not a diss to them !!! i just have a lot of conflicting thoughts and feelings abt it looool#sorry these tags always turn into a rant#diary entries
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catmask · 2 months ago
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if it's not too intrusive, would you be comfortable talking about your experiences with OCD and maybe what made you seek a diagnosis?
idm it might help other people. i mean disclaimer not to use this as a diagnostic tool but if this sounds like u and u got a doc to talk to its worth bringing up
i think an important place to start and why i didnt think i had ocd is i am 1) autistic 2) a csa victim. this is pertinent because all of the things that actually lead me to get diagnosed with ocd i just kept dismissing as parts of those two other things. thinking 'surely this is all thats up there cant be anything else wrong with me' (<- thoughts of a clown)
the trouble with this is that coping skills id found for parts of both autism and csa trauma weren't working with things i later found out were related to ocd. so like, for example. frequently having intrusive thoughts about csa/sex trauma, i was told that if im experiencing a flashback the best thing i can do is try to ground myself and comfort myself. and yeah this is true, it would work if a flashback is all it was. but what it DIDNT account for is the guilt/dirty feeling id get after having them and the obsessive need to be 'clean' after.
and this trickled into hundreds of aspects of my life. 'cleaness' has always been such a vague unattainable concept unmedicated for ocd. if some things touch other things theyd become 'unclean'. if a person i felt uncomfortable around touched me or something it became 'unclean'. there were 'good' and 'bad' thoughts to have. i was constantly existing as if my presence was being monitored 24/7.
i could not fucking relax because every action i took, regardless of whether or not i was in private, i was constantly thinkin 'am i doing something wrong? am i hurting someone by doing this? am i breaking any rules?' and the 'bad thing' i was doing was like. i missed my boyfriend while he was at work. or i was going over former scenarios in which i was socially awkward in my head and wondering if i should be dead for doing that.
part of why i dismissed this as autism ofc too is yknow. being autistic i often missed social queues as a kid and was pretty brutally punished for it (physically by my parents, emotionally and socially by peers) so i was like yeah its Normal and Realsitic id have super intense fear about 'am i secretly doing something bad and dont realzie it because no one will fucking tell me until ive already done it and its too late and then i deserve all the punishment i get' but where my loved ones stepped in and were like Hey thats Not really normal. is where it waslike. other autistic people going 'brother i dont do that'
so yeah. it was like. kind of rule of elimination? the problems that wrrent getting solved by coping skills for the Other problems i Knew i had, i isolated those leftover things and my doctor was like 'this sounds like you have ocd. do you do this too' and listed out like 60 other things i didnt consider symptoms i just considered 'funny quirks' i had, like crying so hard id throw up if i couldnt get a blanket to lie perfectly flat during a picnic when i was 8 or thinking i was going to hell and my stuffed animals could feel pain so i would apologize to them iver and over while crying when they fell off the bed
you know. 'quirks'
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copperbadge · 4 months ago
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How did you find the doctor(s) who assessed you for ADHD? Im looking into the process of getting diagnosed because (although ive suspected I might have adhd for years now) I've been struggling a lot more lately and i want to try medication to see if it helps at all. Im trying to search for psychiatrists through my health insurance portal but the the results im getting are all for child/adolescent psychiatry specialists, and I dont think that'll be much help for an adult adhd assessment? Did you have an established therapist to refer you for your assessment or were you able to find a psychiatrist independently?
I actually just kind of had to freeform it, but that does mean I have some tips to share!
I will say, I have never once used a health insurance portal to find someone to treat me for anything. Often their search engine is fucked up and the information is sometimes out of date. I almost always either ask someone who I know has had similar issues if they have a recommendation, ask my treating physician if I have one, or just google until I find someone reputable-looking; any qualified medical center or professional will list what insurance they take anyway, and you can always ask when you make the appointment.
So here's the process for how to do that!
When I was first considering it, I asked a friend who'd had an evaluation that came back not-ADHD, which I liked because it meant we knew it wasn't like, a weird Adderall pill mill or something. I really wanted to have a professional and thorough evaluation because I knew myself and knew I was capable of gaming a questionnaire. The place she had her evaluation was unfortunately having some staffing issues; part of the reason it took me so long is that I played phone tag with them for ages -- I'd call, and regardless of what time of day I called, their scheduler would be "out", so I'd leave a message and never get a call back. Ultimately I said "I really need to talk to a human, because your scheduler has not returned any of my numerous calls" and they said they could transfer me to another office outside of Chicago (in the burbs). That was not going to be accessible to me, so I told them thanks but I'll go somewhere else. Then COVID hit and I was not going to go anywhere near a medical center unless I had to for about two years.
So, when I was making my second serious run at getting evaluated, I did what might be expected of me by longtime readers of this blog: I made a spreadsheet.
I want to caveat this up top with REALLY IMPORTANT CONTEXT: I did not do all of this in a single day. The process from starting research to making an evaluation appointment took about a month, and probably would have taken longer if I wasn't getting somewhat desperate. Do not push yourself to do this as a single act. Research alone is a multi-day process; some days I looked at the open tabs and only entered one tab's worth of information. It took me quite a bit of time to write the form email I sent inquiring about an assessment. It took me time to call the clinic back when they asked me to call to book the appointment. This is a series of steps, not a single leap.
So!
I was looking for a clinic rather than an individual, in part because I'd heard a couple of horror stories about people who went to a psychiatrist and just got argued with for an hour instead of actually getting evaluated. So I googled, and here are some key terms for you, chicago adult adhd assessment. Chicago obviously for the region, but "adult adhd" (putting it in quotes will help) is the important term that will help you filter out a lot of child psych stuff. A lot of what I looked at did included family or child assessment/therapy but were clear that they also evaluated adults.
Then I went through every legit-looking search result and noted down, in my spreadsheet, the name of the clinic/company, the contact phone and email, the URL, the physical location (I needed to be able to get to it fairly easily) and whether they took my insurance. Even if they didn't take my insurance (all but one did) I still put them into the spreadsheet so that if I found them again I could check the sheet and know I didn't need to investigate further. I also tended to bump more legitimate and friendly-looking places to the top of the sheet. And if I were going to do it again I would also look for one specific thing, which is an assessment guide of some kind.
The assessment guide may be something they only give you after you speak with them, so it's not a no-go if they don't have one on their website, but it basically tells you what generally will go on during the assessment, how long it will take, and what you should bring. A full assessment like I had is estimated to take 4-6 hours and they recommended I wear layers so I wouldn't be overly cold/warm in their office, and to bring a snack. That's the kind of information you want, duration of the assessment and what they recommend for you, to ensure that you're working with people who are thorough and care about your comfort.
So, I have this spreadsheet now of places to reach out to, which I know take my insurance and do adult assessment. In the spreadsheet I also had columns for what date I contacted them and whether they'd responded. I started reaching out via email, one per day, with the form email I'd written.
The form email basically said "I'm 42 with no previous diagnosis but I have a family history of autism and dyslexia. I've been told I should get assessed for ADHD, so I'm looking for a clinic that will do the assessment and takes (my insurance). I prefer to be contacted by email but if need be, my phone number is (phone number). Please let me know if you have any open appointments and what information you will need from me to book an evaluation with you." (You can always ask for more information about the actual evaluation process once they respond.)
If I didn't get a response within 24 hours, I moved on to the next, but I only greyed out the text in that line of the spreadsheet; I didn't disqualify/remove the nonresponsive ones because again, I wanted to make sure I kept that information in case they eventually did respond. I did this with about ten clinics, because I figured I must be able to find at least one in ten who could do the eval, and I could go back and research more if necessary.
I think the third or fourth one I reached out to was the first to respond, and I ended up going with them; I had a very positive experience in the assessment itself but it was a real pain in the ass getting the documentation from them -- they took about a month to go through the evaluation data (this is not abnormal but is rather longer than usual according to my psychiatrist) and they gave me an in-person-by-zoom report once it was ready. That said, it took another four months and the threat of reporting them to the state to get them to send me the text of the eval (in part because the evaluator left the clinic unexpectedly with my formal report not yet written). But that's something that's truly impossible to know until you're working with them, and highly unusual, so don't let concerns about that deter you. If you end up in that situation come hit me up and I'll tell you how I dealt with that.
My eval recommended an executive function coach, but if I haven't been able to func it by now I never will, so I thanked them for the recommendation and went looking for a psychiatrist unaffiliated with the clinic to prescribe me meds. There, the key words you're going to be looking for are again "adult adhd" but also "adult disability" and if you want medication that's less likely to be a huge fucking hassle, "medication management". My psychiatrist and I meet every two months to reup my prescription, but he doesn't require me to take a regular drug test or meet him in person in order to get a new scrip, as some people have encountered. We meet in person once or twice a year (I can't remember, it's due to a legal requirement in Illinois) but otherwise it's over zoom.
So yeah -- it's a process, but there are ways to streamline and manage it, and a few tripwires in place to make sure you don't end up screwed by the system. Definitely feel free to ask if you have questions, either here or if you want a more indepth conversation you can email me at [email protected]. GOOD LUCK!
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certifiedsexed · 1 month ago
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Im a trans woman, im 18. I get periods.
Ive been on estrogen since I was 16, 2 years and three months... and my cramps are debilitating. I turn suicidal for a week every month and i sometimes throw up from the stinging/dull pain combo. there is bloating, severe depression, mood swings and extreme dysphoria.
My endocrinologist said that i should beware because my brain is decepting me and that can hinder meaningful conversation in my last meetup a month ago. i swear that im not making this up.
painkillers dont even work on my third/fourth day (i start counting the first day from when i get depressed, the other symptoms start the next day, and there is alot of sharp, radiating cramps, headache and other shittery the third day)
what should i do? am i really such a fraudster? i cant keep going on like this. its reducing my quality of life. is it really possible for me to have this much pain at a 26-27 day cycle??
So, I don't say this lightly: your endocrinologist should go to to hell! You're not a fraud and your brain isn't "deceiving" you. Those are literal textbook symptoms of something like PMDD and it's actually vile of him to straight-up diminish your symptoms and do nothing about it.
My first suggestion is get a different endocrinologist, if you can. That person is committing medical neglect against you and its loaded with medical trans/misogyny. If you can, you do not want to have to continue dealing with that.
Secondly, I want to suggest you try to find an OB/GYN. You have a few choices for dealing with it. If your AGAB is on file, it might be hard to find one that will take you, especially depending on where you live.
If you AGAB is not on file, it'll be easier to get in but medical misogyny, coupled with medical transmisogyny/transphobia is going to make getting help harder.
This does not mean you're faking it or that it's not worth trying [speaking as someone who cannot get diagnosed partially because of bigotry!], it just means people are bigoted assholes sometimes.
You might have to try numerous doctors. I cannot emphasis this enough: if you can, take someone with you! Doctors WILL treat you better.
Sometimes even going to the ER when you're experiencing these symptoms to have them run tests to narrow-down what disability you're dealing with can help. But do not let your endocrinologist force you into believing that the pain you're living with is normal or okay.
I'm not sure if this helps but I hope so, Anon! Let me know if you have any other questions or need anything else, fr. <3333
If anyone else has info that might help Anon, please add on in comments, reblogs and/or asks. Thank you.
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olderthannetfic · 3 months ago
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Oh great, everyone is all in on the ~all the kids who think they have DID are wrroooong~ thing.
Im sorry but none of you saying that are helping the community or plural folks as a whole. Even if you are also a system or have a CDD.
For DID *alone* the barrier to diagnosis is very high- arguably as high as Autism and according to one study it takes an average of 10 years in therapy to be diagnosed because so many doctors are ill-informed or refuse to diagnose it/believe it exists despite all the evidence due to the shadow of the satanic panic. The goddamn REASON people are diagnosed in their 30s and 40s isnt because you *need* to wait that long its because they look for horses before zebras and refuse to do anything else most of the time and fuck us over!!! Many of us report symptoms -the same fucking symptoms- since teen&young adult age or earlier!!!
The diagnosis has many of the same drawbacks of any other major diagnosis like autism and schizospec stuff where you can lose custody of children or the ability to adopt, face unofficial discrimination from doctors or employers or people you try to get accommodations from with it, and could even have your drivers license taken away or have to jump through hoops to keep it- and more issues!
Pursuing a paper diagnosis is not for everyone and the plural community for decades has been built on this- even before the exclusion criteria were added to the DSM and ICD that kicked a huge chunk of us of us off even getting one despite being systems (which is a good thing to be clear! If its not impairing or distressing it shouldnt be pathologized!). We have folk therapy and dyi resources and we have a lot of them for a reason.
And thats not even getting into how therapy has historically severely abused our community and how the only accepted treatment path is pursuing the fusion into one person (which has a hilariously low success rate that for anything else wouldnt be accepted as a vaild treatment) and not everyone wants that or is helped by that.
Most of us are never going to be ABLE see useful therapy or a paper dx, so we use the community to find resources and community and it FUCKING WORKS. We built our community with our own blood, sweat, and tears because no one else could or would fucking help us. And it WORKS.
Attacking these people who self-dx ONLY ever causes splash damage on the very people this kind of behavior claims to protect.
And like. If someone reports an autonomous entity that talks in their mind and takes over their body sometimes its... rather obvious they belong in the 'having an autonomous entity that talks in your mind and takes over your body sometimes' community regardless of anything else. NB4 people say psychosis; Schneiderian First-Rank symptoms are actually more indicative of DID than schizophrenia in this manner according to studies- but schizospec people with persistent personlike voices are known to benefit from the same exercises you'd do if they were ''''real'''' alters and are included in the plural community anyway (which btw doesnt require a dx- calling yourself plural or a system is not self diagnosing its an identity label the community created OUTSIDE of diagnosis criteria FOR this very purpose of self-ID).
While yes, we would agree many people say DID For Sure when they might want to hesitate there- we do NOT doubt they are plural. We just wonder if they were told the ONLY way they could be plural/a system is through DID and that is why they are saying they have it. Which... yeah thats not so great. HOWEVER informed self-dx is fine provided they havent been fed that kind of misinformation.
The solution there though is to just spread the real information about the breadth of plural experiences and people will feel less pressured. Simple as that.
Never EVER telling them its really just something else, you dont know yourself- you cant know something that extreme when something that extreme is EASIER to tell tbh because its such a unique and intense experience.
--
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intersex-support · 3 months ago
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hi! Im uhm kinda questioning if I might be intersex? I have hyperandrogenism and clitoromegaly as diagnosed conditions, but my doctors say they come from a genetic complication from my diabetes. I have a rare genetic mutation, which means I don't have type 1 or 2 type diabetes, but rather type A insulin resistant diabetes. Im not sure if that would mean I can't be intersex because I've only seen things about PCOS so far, but the term intersex comes up when ever i search up my conditions. I was assigned afab and seemed totally normal until puberty and started growing facial hair. It's not a lot but its noticeable. I just wanted to see if the term intersex may applie to me? Sorry if this seems like a dumb question.
Hi anon! It's not a dumb question.
So, I wasn't familiar with Type A insulin resistance before this question, but I did some research to become more familiar with it. And based on everything I learned, I do think that this is a diagnosis that could be considered an intersex variation. Like you shared, it causes hyperandrogenism and clitoromegaly, which are often intersex traits.
I like InterACT's definition of intersex: "a variation that:
shows up in a person’s chromosomes, genitals, gonads or other internal reproductive organs, or how their body produces or responds to hormones;
Differs from what society or medicine considers to be “typical” or “standard” for the development, appearance, or function of female bodies or male bodies; and
Is present from birth or develops spontaneously later in life."
I think that insulin resistance A would meet all those criteria: it's a variation in how your body produces or responds to hormones that differs from what society considers "standard" sex traits for those assigned female at birth, in a way that might bring stigma or discrimination, and it is a lifelong variation, not something temporarily caused by medication or something like a tumor. Insulin resistance A isn't usually listed on intersex variation lists, but I honestly think that's because it's rare enough that orgs just aren't aware of it, and hadn't thought to research it because diabetes in general isn't an intersex variation.
Ultimately, I think it's up to you--if you don't feel comfortable identifying as intersex you don't have to, but in my opinion, you're welcome to identify as intersex, and I think you'd find a lot of shared community with other intersex people who might experience similar symptoms or life experiences. If you wanted to start exploring intersex community spaces, I think you'd find a lot of people who would accept you. Your journey is your own journey and there's no timeline or pressure to do anything, but you absolutely would count as intersex from my perspective.
Please feel free to reach out if you have any other questions, and wishing you the best of luck, anon!
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cripplecharacters · 3 months ago
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im not physically disabled, but i want to write disabled characters in my story i have a character who use wheelchair, and i like to ask should i provide a reason why the character use wheelchair since from what i hear many characters using wheelchair doesnt have their condition specified and often referred as "legs dont work syndrome" so i want to avoid the "legs dont work syndrome" by specifying the character's condition.
Hi
I think it's always good to establish a character's disability (assuming they're not like a one-off NPC or something). Depending on whether they're the POV character or someone that the MC talks to once in a while or someone in between the two, you will probably want to provide a different amount of detail.
If you have access to the character's thoughts, they might simply think about their disability when they Experience a Symptom or think of something in the past that was related to it, and you can drop the name in there (e.g., “that was right after the doctor diagnosed me with spastic hereditary paraplegia”, or whatever). But if it's some side character, they might just make a single remark about what their exact disability is - maybe they're going through some rough terrain in an all-terrain wheelchair and mention that when they were born with spina bifida in the 60s, they didn't think technology like this would come along. You have a lot of options that don't necessarily have to end up being a detailed explanation of the disability.
What I think is more important, though, is that you know what their disability is and actually understand how it works. Because that's really where the “leg don't work” syndrome comes from - writers who think they know what paraplegia is while never having read a single thing on it. There's magically no pain, no bladder problems, no physical therapy, no spasms, no autonomic dysreflexia, no temperature regulation problems, their Legs Just Don't Work! How convenient.
If you manage to show how their disability affects them and have it make sense for what their disability is, you will avoid the “leg don't work” trope regardless if you name-drop the specifics. (Though I still think it's good to drop it in-writing!) So do your research, establish symptoms, how they deal with them, what aids they use to do that, and make sure it's based on facts rather than what you think is correct - because this thinking is the culprit behind the trope in the first place. You can also take a look at this post.
Hope this helps
mod Sasza
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etherealspacejelly · 4 months ago
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ok really hoping someone can help me out with this because its a bit weird. first of all, important data:
ok heres the deal. for most of my life, every time i have walked or stood up for more than 20-30 minutes, my feet hurt. not uncomfortable, PAINFUL. like pressing on a bruise painful. if i walk/stand for more than 3-4 hours its a SHARP pain like blisters, except there are no blisters and none form later (unless my shoes were rubbing or something, which if im wearing my usual trainers they dont)
I always thought this was normal and that everyone just grits their teeth through pain to do fun stuff like go to a zoo or a museum or a theme park. but i told my dad about it recently after a day out and he was like "what the fuck go to a doctor thats not normal my feet only feel uncomfortable right now they dont Hurt"
so i want to know how common this is. does anyone else get this? and what might be causing it?
information that may or may not be significant, just including it in case any of it is relevant to a condition i havent heard of:
i am diagnosed with adhd and working on an autism diagnosis
i am hypermobile (not diagnosed yet but. my neck and arms definitely hyper extend, and ive been able to touch the floor without bending my knees my whole life without stretching regularly, so i know i am)
my hands swell up in extreme temperatures. expecially if im exercising at the same time. i used to have to get other people to do up my shirt buttons after PE in school because i couldnt bend my fingers enough to do them myself
i bruise very easily. my brother likes to poke and prod me to get on my nerves and if he pokes just a little too hard, i bruise. also scratching my leg through my trousers causes me to bruise
i get friction pains on my hands if im doing something like carrying a heavy bag with a cloth handle or opening a tight jar
i have very dry skin and suffered from excema as a child/teenager
i have been looking into EDS and i think i might have hEDS, so idk if any of this is related to that. my dad also thought the foot pain might be an autism sensory issues thing?
if anyone can relate to any of this please tell me about your experiences and what causes it because that would be super helpful
thank you
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wishful-seeker · 3 months ago
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Being disabled means speaking to doctors and nurses like you are defending yourself against a crime in a courtroom
Im seeing an old rheumatologist tomorrow about me having possibly having behcets, a disease my mom has and we have the same symptoms.
But his nurse called and said he "already tested for that" which is a lie!
There is no test for behcets, like crps its diagnosed through symptoms, not tests. What he's talking about is before my crps was diagnosed with thought it might be behcets so he did a blood test called HLA-B51 testing for something in the blood that may suggest behcets but that shows up even if you don't have behcets and people with behcets can still not have it, so not a definitive test.
I said this to the nurse and she very passively aggressively said "where did you get that information? :)" i said "my mother who has behcets and mayo clinic."
She put me on hold for a minute then came back "that is the teat he usually does for behcets and he did for you, but like i said you already discussed this issue with him about your disease." I said "NO, HE DID NOT. You are referring to my CRPS which i thought was behcets, im asking him to look at a COMPLETELY NEW illness with NEW SYMPTOMS." And again, with a passive aggressive attitude said "okay..."
So im seeing him tomorrow.
Why do i have to fucking fight for my life like this.
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spectrumgarden · 9 months ago
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I keep thinking about how no one seems to think about nuance when it comes to like, the concept of "autistic traits / symptoms" and discussing them, and how that is intertwined with the push to not consider it a disability. And its complex to discuss, but here's my convoluted thoughts. I know it's long but I hope people will take the time to read it.
There are in fact people who do fit some commonly associated with autism traits that are not impaired by them. Let's make up a guy, for a second:
They like routine and repetition a lot but easily handle change in them. For example they wear the same set of clothes for years with no desire to ever branch out, but if you made them wear something else they wouldnt really be bothered by it as long as they dont think it's super ugly, etc. They like to watch the same movies over and over but happily agree to watch other things with their friends when spending time together, and are engaged and interested in those movies. Etc. They speak very formally or choose "complicated" words for things that could be expressed easier. They however do not face problems with communication beyond annoyance of others because they're able to rephrase things easily to be understood, and they also have a normal back and forth in conversations and initiate conversations normally. They sometimes engage in subtle self stimulating behaviors and recognize the desire to do so during boring or stress inducing times (which pretty much everyone does, btw). They dislike loud environments but do not respond with melt- or shutdowns or any other "severe" reactions, and while for example preferring to go to a museum over a club, they easily go through their daily life in busy areas like city centers, shops or cultural events like parades without issues beyond like, mild annoyance and no desire to stay for longer than necessary. They have strong interests in seemingly random topics and spend quite some time researching or engaging with those, but they do not view the world through the lense of said interest, they do not neglect caring for themselves or fulfilling academic or professional responsibilities because they are so engrossed in their interests, they are easily able to hold conversations about other topics. I could go on.
This person would not be diagnosed with autism by any doctor who pays attention to the impairment clause of the diagnosis. They would probably be told "you're subclinical / you do not meet enough criteria / ..." While his person would probably relate quite a bit to (parts of) descriptions of (level 1 and / or low support needs and / or high masking) autism. And this is an imaginary person I made up, but these people obviously exist (and as a side note, are probably what people refer to when they talk about "everyone being a little autistic" etc)
And this person being told they're not autistic might be upset. Because clearly, they have so many autistic traits. They relate to so many videos! But the thing is! There is no impairment! The one thing that connects all of the symptoms related to autism to the actual diagnosis. This does not mean they do not in fact relate to the autistic experience. This does not mean these parts of their life or personality are fake / non existent / not important to who they are and how they experience things. But it is important to differentiate. If they consider themselves autistic, if the world considers them autistic, it waters down the definition to a point of being categorically useless from a medical standpoint, from a standpoint of figuring out who needs support and in what ways. Who needs (early) intervention, who needs extra support in school or at work or at home or in public.
And like. Humanity at large will probably always want to shove themselves into random categories. "Which character are you like?" "What is your personality style?" "What is your star sign?" or "which sports team do you support", and countless more come to mind. I dont think this imaginary person is wrong or silly for wanting to find a category of people they are like, or recognizing this similarity with some autistic people. I wouldnt even mind if they made up a non-clinical category / group of people who relate to autistic experiences without the impairment. It would get the point across that it is a group of people with shared experiences, but it is not the same as autism.
However autism is increasingly treated like something thats just a personality type without impairment, by people online and offline. And when they go "this is an autism symptom" without nuance, without looking at the need for impairment, or even differential diagnosis, it spreads that attitude. "Liking to eat the same foods is an autistic trait"... or is it normal to have food preferences to a degree if it does not cause you stress to eat new foods, if you are capable of eating other food if hungry and presented with them and not the food you prefer? Or is this person anorexic and their mind has created categories of "allowed to eat" and "not allowed to eat" based on arbitrary categories relating to their fear of weight gain? "Only eating with small spoons at home is a common autistic trait"... or is it a harmless preference as long as you are still able to eat food outside a strict routine set up with zero possible deviations? Or is it a person with OCD and eating with small spoons is a compulsive behavior for some sort of intrusive thoughts?
I could go on forever. But in the end, these short sentences are all the same. They are, at the same time: autistic experiences and allistic experiences, because they are so non specific. They are watered down and any additional information is removed.
autism is about a specific combination of experiences that impair you. That's literally all it is. It does not automatically turn us into a category of "other" that is fully not possible to relate to, because we are human too. And some of it will be relatable to people that are not autistic!
And there is value in discussions of experiences of autistic people that go beyond the impairment, as long as we do not forget about it, or treat it as secondary instead of the defining factor. I dont mind if autistic people bond over something they're not impaired by, that they see as a common experience, for example not easily going along with authority. Being creative. Preferring the small spoon (without being impaired by it while having other impairments), whatever, and call those common autistic experiences. But those are not the pillars of what make up autism and solely relating to them should not be your reason for calling yourself autistic. Neither should relating to commonly impairing symptoms without being impaired by your version of them. The impairments resulting from abnormal development are what makes someone autistic.
There needs to be more nuance, detail, when discussing autism symptoms. And the push to, at the very least, expand autism into an area of experiences that do not cause impairment of any kind, or worse claim it never caused impairment, need to stop. It does not help anyone.
I genuinely think part of the whole "everyone is autistic these days" crowd who likes to go after people and invalidate them has picked up on some of this, but they lack the skills to criticize it for what it actually is and / or they want there to be a simple solution, which is that everyone who calls themselves autistic online who does not fit their very stereotypical view is faking. They are wrong of course. But I dont think this comes out of nowhere. There is something to criticize about how autism is treated in many circles, especially among younger people.
I'm really not sure how to end this post because I like to come to some conclusions on my long posts but just. Uhm. The way some people treat "autistic traits" as completely unrelated to the impairment they cause while staying exclusively autistic traits is wrong. The way people try to redefine autism is harmful and in the end not needed because they could simply invent other words for that experience.
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ganondoodle · 3 days ago
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Have you been assesed for adhd?
nope, though im pretty sure i got it ... or its something similar bc although also not officially diagnosed there is no way im not autistic OTL
the only things i have been .. 'diagnosed' with is anxiety and chronic depression, though both of which by a therapist that got arrested for fraud and harassment (hahaha .. ._.) and im not sure how much weight that can hold both bc of .. THAT and bc i honestly have no idea how much a therapist can do (its been many years since then too) and the only meds he ever offered me where like .. drugs ('herbs')
i have been thinking of asking our family doctor about it but im rather afraid of whatever process i gotta go through to get anything that might help since im sure its also not JUST adhd that causing all this (and ... im afraid it could impact how i am treated ... like if they know im autistic are they not gonna take me seriously anymore or stop me from making choices about myself.. welp theres the anxiety ndfjkgndfknvgfdk)
(and a new therapist is pretty impossible bc theres a really big problem of not enough therapists around ESPECIALLY where i live ... also fear bc of the previous one .. haha ._, )
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auschizm · 4 months ago
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this is an offensive symptom to have but its real and i promise it isnt a troll, just hear me out: i haven't had a chance to talk to a doctor about this because of our economic situation, but i have a symptom where the n word plays in my head whenever i see a human or animal with dark pigmentation, not just black people but also dogs at the dog park for example
for context im a 19F afab european-american woman. and i don't know what to do about this because a few weeks ago on my birthday i was just sitting there at a restaurant on a busy day, and i was sitting by the entrance to charge my phone while a lot of mostly black people walked in and out, and i received the n word playing in my head a few hundred times and there was nothing i could do about it. I'm not racist i just have this recurring involuntary duosyllabic thought that i can't control.
this could be related to ocd or it could be some other type of coprolalia thoughts. but i also have thoughts multiple times a day saying "i am going to k*** m*s***", which i know I'm not going to do, it just gets really annoying and recently I interrupt those thoughts by thinking SHUT UP SHUT UP DON'T SAY THAT or something which certainly feels like I'm "going crazy" or something but i don't know what's wrong with me. (both of these have happened since around autumn/winter of 2023.)
i told my mom about this and she knows, we just haven't had a chance to talk to a doctor because we are moving to a different house. I've been diagnosed with autism and ADHD, and i was given a GAD diagnosis in January 2023 with the doctor saying i had some ocdspec traits of obsessive compulsiveness, tics, dissociation, and i forgot what else he mentioned but maybe the fact that i stutter? (i dont know what he meant by tics, back then i just made noises when lost in thought or typing things, and i used to have echolalia when i was 5 or something, this was before the current symptoms) i have no way of knowing right now if this is my Super Mega Autism (autism/adhd/anxiety + ocdspec traits) or if it's an ocdspec disorder if i am developing schizophrenia or schizotypal or something. and I'm not asking for a diagnosis or anything i just want to know what your thoughts are on the symptom situation because it's weird and i don't want to publicly post about it.
(and another thing, sometimes when I'm alone i stim by saying "vinegar vinegar vinegar" or Something Else if you know what i mean, and it might be controversial to have coprolalia-related stims, but my head/face feels warm and electric and i say it to calm down and feel normal again which is not something i feel comfortable telling a doctor about. I have a stutter affecting my speech, but i don't completely "involuntarily speak" offensive things, i just involuntarily think KMS and the N word on a consistent basis without variation in the symptoms besides them getting worse, and sometimes get a strong urge to say "vinegar" or just the last 2 syllables of vinegar, which sounds terrible but i think it's similar to coprolalia and i only do it when alone where nobody can hear me.) again this might sound fake or like a troll ask but i promise it isn't. what are your thoughts on this? again im not asking for a diagnosis i just need somewhere to anonymously talk about this.
1) Obsessive compulsive thinking is not fully within your control and does not reflect your actual desires or character. The best way to manage it is actually to stop moralizing it and to focus your attention on what actually leaves your head. 2) Of course no mental disorder excuses acting in racist and otherwise bigoted ways, but things happening exclusively inside your head can't hurt anyone but yourself
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