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#disability awareness month
kunaigirl · 10 months
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Happy Disability Pride and awareness month! Let's talk about Epilepsy!
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Hi there! I got tired of seeing my condition (that impacts my literal every day life) being left out or forgotten about during discussions about disabilities, so I made my own post about it! Let's go!
First Off! What the heck is epilepsy? Epilepsy is the fourth most common neurological disorder in the world, and it's a chronic medical condition. Epilepsy is a brain disorder that causes recurring, frequent, triggered, and unprovoked seizures to occur.
The official Epilepsy Foundation describes seizures as follows: "Seizures are sudden surges of abnormal and excessive electrical activity in your brain, and can affect how you appear or act. Where and how the seizure presents itself can have profound effects...Seizures involve sudden, temporary, bursts of electrical activity in the brain that change or disrupt the way messages are sent between brain cells. These electrical bursts can cause involuntary changes in body movement or function, sensation, behavior or awareness." (Source link)
Sounds like a lot of fun right? This is our life. Even with medication, we can be VERY limited to what can be safe for us. Seizure medications are NOT a cure, they only exist (at least as of now) as a tool to help have your seizures less often, or be triggered less intensely. Even on medication, seizures can still happen.
If you have epilepsy as a child like I did, it impacts your entire growing and developing experience. I spent MANY times as a child in and out of hospitals, neurologist and specialist offices, an getting so many EEG tests done. The pain of scrubbing the glue out of your hair for DAYS is horrible.
At a young age my seizures were so frequent and serious, it impacted my brain's ability to retain information. I had to re-learn the names of things at age 8 and 9. I had to re-learn HOW TO READ at age 10. I had to be home schooled because the public school system of my state at the time refused to work with me. I have VERY distinct and vivid memories of crying over my little baby ABC's book that I needed as a 4th and 5th grader. I knew I should've known this by this age. I knew that at one point I already did, and it was TAKEN FROM ME.
As an adult, I'M NOT ALLOWED TO DRIVE A CAR. And I can NEVER go to see a movie in theaters or go to see concerts or live music. There are entire TV shows I don't get to see. I can't go to clubs, arcades, dances, or raves. I miss out on A LOT of fun things. I always do, and I'm WELL AWARE of the fun I'm missing out on. The social, casual, and fun life experiences I'll never get to have. That WE'LL never get to have. And oh yeah! Seizures can KILL SOME OF US. Yep.
And the list goes on, and every person with epilepsy experiences it differently. There are multiple different types of seizures you can have, they're NOT always convulsing on the floor. For example, I have complex-partial-myoclonic-seizures. Meaning my muscles DO twitch when I have seizures, but I'm not always completely unconscious and sometimes I'm even able to stay sitting up. However, I'm still very "off" and can't focus or remember much for a good while after the fact. I can't talk or communicate during one, even with my slight bit of consciousness.
My experiences are not universal, I just wanted to talk about it and bring it up. It helps to talk about it even a little bit. Here's more about different kinds of seizures. Here's more about common seizure triggers. Here's more about CORRECT seizure first aid. And here's more general information/resources.
Please stop leaving us out of disability awareness. Please stop ignoring us or saying we're "not really disabled" or anything else like that. Please. Why does it always feel like the only people who care about epilepsy, are people WITH epilepsy? We're so tired of being ignored by others who don't have our condition.
If you're an epileptic person reading this, I see you. I love you. You're so strong, we all are. I believe in you, I believe in us. We're so much stronger than we get credit for, and it's going to be ok. Your anger and frustration are valid. Your emotions and struggles are real. You're valid, and I see you. Hang in there, we got this.
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crystem · 10 months
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I am once again begging several companies and important services (hospitals, GPs, etc.) to allow forms of contact other than verbally calling. Even with special numbers for that kind of thing, oftentimes the people running these services will still call back ignoring issues such as deafness or mutism, and then act as though you were in the wrong for lack of response - even if informing them of your condition beforehand.
I was fully mute for a few years, and the amount of times medical professionals ignored this and tried to call me for verbal discussions, or didn't provide another method of contact, was abysmal. They even demanded verbal calling by phone to be let into the building. So many services need to do better about this, and so do several companies. Not everyone can talk (even if they can hear), and not everyone can hear (even if they can talk). I am begging these services to do better.
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its-ticsticstics · 1 year
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People need to take the word "comorbid" out of their mouths until they learn what it means.
All it means is that two or more conditions are present at the same time.
And now I see people taking things like "Autism and ADHD can be comorbid" to being "ADHD is basically autism-lite" and finally "Autism and ADHD are basically the same thing"
and
NO ITS NOT. That's not how this shit works. Disorders aren't just a pick and chose of quirky traits that make you So Weird and Unrelatable.
Autism and ADHD are NOT THE SAME THING. I have both and while there is SOME overlap, its not to the extent that these disorders are not distinguishable from the other.
TDLR; someone with only ADHD wouldn't appear clinically autistic unless, well, they had comorbid autism and vice versa. Not saying the experiences don't overlap, but that people taking comorbidity to mean "basically the same disorder" is way too huge of a leap.
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sweaterkittensahoy · 10 months
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My chronic pain disabilities (hip fuckery; migraines) do not stop me from working. It doesn't mean I should treat my disabilities with less respect than disabilities that DO make it impossible to work.
When my endo pain was at its worse, I did all the things I was supposed to do--according to HR--to protect my job. I filed ADA paperwork. I communicated when I used it. I had the doctor's note. Etc.
Two days before my hysterectomy, I got a call from HR. "Oh, we're not sure we'll have work for you after you recover."
Which, first of all, is fucking illegal to say to someone who has ADA paperwork in place with you.
And, second of all, you're a fucking liar. I was the ONLY tech writer in a company of 500 people. Don't bullshit me.
I should have filed a complaint and sued the fuck out of them, but all I wanted to do was be able to possibly get out of pain and not have to worry about my paycheck after that. So, I called someone else in the company who I knew would lose his shit if I told him I'd basically just been told I had no work to do.
Two days after surgery, I had an email from HR to my personal account. Which, technically, they ALSO should not have used to contact me while on medical leave that was--like my disability paperwork--100% lined up and signed off on.
But the HR person wanted me to know that "Oh, looks like there IS work for you! Lol! Didn't know!"
This is bullshit. She was very aware.
Years later, I'm at a much better company. My supervisor, who is nothing but supportive, recently floated that it might be good to have ADA paperwork in place for my migraines because they flare during stress, which is the time I'm needed at work THE MOST.
No shit: I went into hard shutdown for about two minutes after he said it. It wasn't a threat or a dismissal of my migraines. It was him going, "Oh, hey, so no one can ever try to use them against you to say you're bad with stress, you might do this."
But all I felt was how I was absolutely fucked over by a bad company because they said, "You need to follow these legal steps," and I did, and they still tried to get around them.
So, no, I'm not dealing with getting punished if I have more than 2k in my bank account. I'm not dealing with people touching me, or my assistive devices (I don't currently use any). I can park anywhere in a lot and walk to the store entrance. But I was disabled, and I AM disabled, and I have had people try to punish me for existing in a body that just fucking HURTS because it HURTS.
It's Disability Awareness Month. I am disabled. Less so than I was ten years ago, which is a fucking stroke of luck. But also my right hip has started to go now, and who knows what the next 10 years will bring.
It's Disability Awareness Month. If someone says, "I'm disabled, and I want to talk about my experience," please pay attention and listen and learn and understand there's all sorts of ways disabled people are fighting to be treated with basic human dignity and under the basic rule of law.
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fantasy-frog · 10 months
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To anybody who might see this, July in the states is disability pride month. As someone who’s past decade plus has been a journey towards understanding, accepting, and advocating for my psychological and physical disabilities and my whole life, aiding disabled family members, I want make it known that: the way many of us feel you can help us the most, is not by “pretending” we’re abled, like we’re just like everyone else, because we’re *not*
When disabilities are ignored, or treated as just “uniquely abled”, it falls on the disabled to maintain abled people’s comfort; to make our disabilities small, to not advocate for equity and the bettering of our lives in a supposedly equal society.
Equality is not equity.
Differences must be acknowledged, understood, and worked around *by abled people* for any true progress to be made.
Most people think this is government related. I know abled people as individuals can’t change that there’s little to no wheel chair access in their bustling city, that the sidewalks are cracked and filled with lips. An abled person can’t make public schools treat autistic kids with humanity, or children with memory-relates disabilities able to always have notes for their exams. They can’t make the employers stop firing us, or the government give us our right to marriage when living under SSI.
What I’m asking for is Empathy. True empathy. The kind that informs your beliefs, and actions. Talk to disabled people. Get to know them. I promise you, you have a disabled person in your family or social circle. Really be inquisitive about their experiences, struggles, and frustrations.
Acknowledge your privilege. Your ease of access to the world. Really sit in it. Absorb it. Your empathy will only grow. And when enough abled people do even just this, the world for us becomes less hostile. It becomes more livable. We become no longer burdens, but cherished by our communities, our families and friends. And trust me, even though the world is not built for me, and I have to consistently jump through 10,000 hoops to achieve even the smallest of victories for an abled person, and my body hurts and breaks down, so I get in a chair on wheels, or get out my cane, or put on my noise cancelling headphones, and just come across obstacle after obstacle -
The majority of the pain comes from the stares. The glances. The questioning. The points when you see the patience leave the eyes of the one who you thought loved you unconditionally, and you remember your place in our collective culture. And fuck man. You recall how workable all the bureaucracy and hurdles felt, how manageable it was to push forward (it’s what you always do) … before you were reminded of where you sit on the totem poll, and how conditional worth is in our society.
Disabled people are worthy. We are valuable. But we need you to believe it, or nothing will ever change.
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Today's Disability Pride month post
Object permanence
I see this one misunderstood a lot because people think of it in the context of babies. But ADHD object permanence is different from baby object permanence.
What is it?
So remember yesterday when I said if I get a planner to manage my time blindness, I forget it exists? So in the context of babies it's "If you put the planner in the box, the baby thinks the planner is gone." But in the context of ADHD it's "I put my planner away in a drawer. My brain is actively thinking about something else. That planner is GONE to me. But if in 5 days my friend is "I'll write this in my planner." I'll be like "Shit. My planner is still in that drawer." It's not that I forget that the planner exists. The idea of planners ever existing at all completely escapes my mind. (Okay but if it's hidden in that drawer for 5 years I will probably forget that I even bought it).
How do you manage it?
Honestly. I really don't fucking know. I try to not keep things out of site. Out of site out of mind. If it's something like "I need my computer to work." Then it can be put away. Because the idea of needing a computer will remind me that I have one. But if it's "I bought this pretty necklace". I need to store it out in the open otherwise I'll forget I have it because I don't NEED it.
If you store everything out in the open, won't it collect dust...
Yeah... listen. I don't know what you want me to say here. If I don't see it I forget it exists. I just found a pair of headphones the other day that I didn't even know I had, which was really annoying because I really needed a pair of headphones. If you got any tips and tricks let me know.
I still have a whiteboard I need to put up because I keep forgetting I have it. I also have a binder I need to organize my important information in but I keep forgetting to do that because I keep forgetting I have it. And I have weights I keep stubbing my toe on because if they get put away I'll forget I have them and my doctor says I need to exercise more.
Wow this is the first time you've raised awareness for a thing and not had advice
Yeah. Because I don't understand how you have all of the things that can possibly exist perfectly organized in your minds. Like how the fuck are you like "Ah shit. I need to wrap this present. I'll use this wrapping paper I bought 3 years ago." It's weird. It's weird and it's creepy that you just remember shit like that.
I was like "I should do some exercises because the doctor said so". And I was doing the exercise like "this would be a better exercise if I had weights." I DID HAVE WEIGHTS. THE ONES I NEEDED WERE RIGHT BY MY FEET. HOW DID I FORGET I HAD THEM.
-fae
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doomsdayradio · 10 months
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this disability pride/awareness month remember that pwPDs are disabled and often face an extremely normalized form of ableism. i've literally been called a subhuman parasite for having NPD, ive been told i should kill myself for having HPD, and those are just some of the worse comments, i've gotten tons of other shit from ableist fuckers.
don't leave us out of the fight against ableism and the fight for disability rights, we don't always have the exact same struggles but our struggles still matter and deserve to be put into consideration.
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crayonurchin · 10 months
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It's very hard to not compare myself to others nearing their 27th birthday. But when I compare myself to myself, I can recognise that going out with friends for a nice evening of food, laughing and a film, is miles and miles away from the quivering mess of destroyed mental health I used to be. Someone who was trapped by a failed school system, multiple grooming incidents, a believe my neurodivergence was just personal failings and the totally unknown OCD.
I am the best 26, nearly 27 year old I could possibly be. And by 28, I will be better still, because I love every single version of myself I have ever been. Those girls deserve how I am, and how I will become.
So please, this disability awareness month. Look at yourself, and see the things you've grown in to. Look at how you've blossomed. It doesn't matter if you're still budding in a potted plant while others are huge rose bushes. Your roots are spreading, your petals are growing, and you are the best you can be right now. No matter where that is, THAT is a good thing. All your pain is valid and how you feel is real, but please don't give up. No matter how hopeless if feels, please stay alive another minute. An hour. A day. You really don't know when you'll suddenly stop wanting to die, because being alive got a bit better.
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Change your brain to stop reaching for ableist language to describe your world
D*mb, st*pid, cr*zy, ins*ne, and many many more ableist words and phrases still dot our daily conversation landscape. This Disability Pride Month, show you’re listening by doing the work to use language that doesn’t perpetuate ableist culture.
This is a non-exhaustive curated list of terms and suggestions for replacing them in your vocabulary, as well as accompanying notes.
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butchtheworld · 2 months
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egan's disability guide: being bedbound
people really liked my last post about crip tips, so here's more. what you're able to do while bedbound will really depend on where you're at physically - doing more, doing less, etc. will all be different. so, these are just what got me through ~a year of being stuck in bed for 18 hours of the day.
have a hobby that doesn't involve looking at a screen. i cannot overstate how important this is - if you're usually writing/gaming/watching shows/scrolling, you are going to get into a rut and probably also a migraine. i latched onto crocheting and reading.
lap desks are your savior. aside from the practical use of not having everything on your lap, i found that lap desks offer a sort of mental differentiation between 'work zone' and 'sleep zone' even if it's all your bed.
showering. this one depends a lot on your health and energy levels, but showering was always super helpful to me. at the end of the day, i would drag myself to the bathroom, sit on my shower stool, and wash everything off from the day. this was another thing that helped me differentiate from 'work' and 'sleep.'
stretching when you can. even if it's small (wiggling your toes, stretching your arms up, rolling your neck from side to side), moving in small ways will help you keep in touch with your body and keep moving forward.
mix in fresh food. lettuce, apples, oranges, cucumbers, peppers, whatever. it was always easier for me to eat processed foods, and those are definitely worthwhile. but, you need to mix in fresh foods too. even if you're not doing a whole gourmet salad, eating a fresh vegetable will feel good.
keep your usual things. i hated having my schedule out of normal, so i incorporated my schedule into what i needed then. i still had my morning coffee, still watched a movie most nights, still did my assignments for a few hours after school let out.
CHANGE YOUR SHEETS! i always needed help doing this (changing sheets is still a huge exertion of energy for me, months out of being bedbound), but having fresh sheets is crucial. your skin, body, and mind will thank you.
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ooppo · 1 year
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National Bipolar Awareness day - March 30th.
I remember the first time I had a auditory hallucination (that I was aware of) was when I was, like, 15~ years old and I was sitting in my bed reading fanfiction. It was 7 at night when I heard the sound of these musical instruments being knocked together at a steady beat:
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I started to look around really, really confused because like where the fuck is this sound even coming from? It sounded like it was being played right near me. So I was looking around until I found the source of the wooden knocking, which was from my stomach. Once I found the source the rhythmic knocking slowly faded until it was silent. Before this incident I had several visual hallucinations of spiders and bugs that weren't there but I attributed that to being tired (after a Google search of 'tired hallucinations') so when faced with this very loud new hallucination at 7PM when I was feeling awake, I told myself "oh. I must be tired." And went to sleep.
Moral of the story is that your brain will downplay the signs of serious mental disorders if you aren't educated in what they are. I think everyone should learn the signs of what mental illnesses look like just so they can help themselves or others. I went undiagnosed for seven years and my father went undiagnosed for nearly 50. The signs were there and obvious to both us and outsiders, but due to a lack of information that could have been cleared up by a simple search of 'bipolar symptoms' 'what are delusions' 'what kinds of hallucinations are there' these symptoms were overlooked.
Serious mental illnesses like bipolar/schizophrenia aren't as uncommon as you think. Here are some popular actors/celebrities who have been diagnosed with bipolar disorder (ones that are open about it):
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I don't want to post a ton of links here so you can Google "celebrity name bipolar disorder" if you'd like to. Historically influential people with a suspected bipolar disorder diagnosis are Virginia Woolf, Vincent Van Gogh, and Edgar Allen Poe.
With national bipolar awareness day coming up (March 30th which is also Van Gogh's birthday) I wanted to post something for it.
So please learn the signs of mental illness for your sake and others. Bipolar disorder is as common as autism. They are both 1 in 100. Schizophrenia is 1 in 300. Ocd is also 1 in 100. Here are some helpful articles about the signs of these illnesses:
Bipolar
Schizophrenia
Ocd
Schizoaffective
Your mentally ill siblings aren't scary boogyman, they are mothers, teachers, artists, lovers, poet's, garbage men, deli workers, etc. They are people.
I remember when my father was diagnosed after me, he told me: "All my life people would ask me, 'what the fuck is wrong with you?' and I would always say, 'I don't know'."
You could be the reason why someone gets help.
No one in my fathers or my life knew what bipolar disorder looked like, so we suffered with it for years unknowingly.
I remember when I was learning the signs when I was suspecting my diagnosis, I had learned the signs for schizophrenia as well (since psychosis is a shared symptom between the two illnesses) and when I saw the symptoms of schizophrenia I remembered my old highschool friend who I thought was weird because he talked about how he could get called into the matrix and would go still for long periods of time when he was "transferring" from this world to the matrix world. Now I see that as possible signs of delusions and catatonia. That weird and off putting kid in school could be suffering unknowingly. Your strange uncle who accuses people of stealing his shoes could be suffering. YOU could be suffering and asking yourself why you're so weird/don't fit in/can't keep up.
So please for national disability month and bipolar awareness day learn some of the symptoms for serious disorders because you or a loved one could be suffering from it without knowing. Thank you.
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planetbeanie · 10 months
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Tw: Self Harm
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Where do I even start with this this? It’s so horrible and I dare to say insulting. Company is Plushie Dreadful.
‘Insomnia due to compulsive thoughts.’ Actually no I don’t suffer in constant agony.
‘Skin picking and self harm.’ By skin picking you mean dermatillomania, which can be a co occurring disorder with ocd but is not a symptom itself.
‘Loss of fur due to repeated cleaning and scrubbing. Mask is evidence to contamination fixation.” UGH!!!! There are like 5 main sub types of ocd and contamination is just one of them! Why must this be the poster child of our entire disorder? Yes I have issues with contamination ocd but I also have issue with other sub types as well. Stop diminishing us like this!
‘Obsessive thoughts and a wish to remove those thoughts.’ Once again, no I don’t live in constant agony, I actually go to therapy and have learned how to stop my thoughts pretty well.
Now let’s get to why this feels even worse than everything I just said. Here are their plushies for various other types disabilities
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They’re so cute and have color pallets that tie into representing the disability. But when you come to the ocd mental health bunny there’s no references to anything actually supportive about ocd, or even including the color of our ribbon. Our ribbon is such a pretty teal and yet you went with such a drab and depressing design.
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0/10 stars you failed the assignment and I don’t even think showed up to class, smh
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leebrontide · 1 year
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Apparently It's Disability Awareness Month So Be Aware Of Me.
Hello, I'm Lee. I'm a bit deaf, have a few weird cognitive disabilities (short term memory, sequencing, that kind of thing), and a now-mostly-managed chronic pain issue that seems to be a result of garbage cartilage.
I wrote a book, and it's about superheroes, and family, and found family, and technology, and government corruption, and brain altering nanites, and several flavors of queerness, but mostly, it's about disability.
The next several books in the series will also be about all of these things. Book 2 is in edits now.
It's free as an ebook on Gumroad or you can pay money to get it as an audiobook on Audible, or in paper format from that river site, or your favorite local indie (mine is Moon Palace Books).
Please check it out
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its-ticsticstics · 2 years
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its disability awareness month so lets get fuckin real about tourettes and tic disorders bc some people STILL don’t get it 
Dispelling some myths
NO you can’t ‘catch tics’ from watching tiktok videos.
NO anxiety, OCD, ADHD, and Autism do not cause tics, HOWEVER, they are extremely common in people with TS/tic disorders and up to 90% have them as comorbidities.
NO ticcing in your sleep is not a sign of epilepsy.
NO CBD/THC are not magical cures.
NO not everyone with tics has tourettes. Tic disorders are there own seperate diagnoses from tourettes and many other neurologic disorders (and things like degenerative diseases, brain injuries, and enviromental toxin exposure) have tics or tic-like movements. 
and finally 
PEOPLE WITH TICS DO NOT TIC 24/7
FAQS
Do you tic during sex????!?!?!
First- stop asking strangers this, you’re CREEPY. Second, normally no, tics tend to lessen while ‘distracted’. 
Isn’t Tourettes just swearing? 
Nope! It includes motor movements, other vocalizations, many comorbid mental health disorders, and phenomenon like tic attacks and uncomfortable urges before tics. Coprolalia and copropraxia (the swearing and inappropriate gestures) actually only appear in ~10% of TS patients. 
Do tics hurt? 
Technically, the sensation of ticcing is just uncomfortable. However if the ticcing invovles self-hitting or anything that would normally be considered self-injurious, or the tic repeatedly happens and strains a muscle, then yes, it hurts.
Can I laugh?
This depends on the person. Some people are okay with it at anytime, others only if they’re laughing first, and for me- its okay as long as its not a tic where I’m hurting myself or something and othertimes, I want my tics ignored completely no matter how ‘funny’. 
Is there a cure?
No. There are therapies and medications to help manage symptoms but there is no one ‘cure’ for tic disorders or tourettes syndrome. 
And here are some of my other posts on Tics/TS terminology/Need-to-Knows:
Basic Terminology
What Are Motor Tics?
Phenomenon in TS
More Facts about Tics/TS
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lesenbyan · 10 months
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Alright y'all, I hate doing this but my finances are spectacularly fucked.
tl; dr: I am disabled, missing a ton of work, and now, between two accounts, have roughly 5,200 USD to pay back. This doesn't count medical bills. paypal, cashapp, venmo.
tw: mentions of disordered eating
For those who don't know me; hi, I'm Jayden, I have ADHD, Fibromyalgia, EDS, and Bipolar, among others. I'm also a nonbinary aro/ace lesbian in a QPR ( @sezja, gf of 5yrs) and I'm also also half black.
Over the last three or four years my fibro has slowly worsened and I use a crutch more days than I don't and when I'm home I'm about 70-80% bed bound with my roommate taking care of most of what I need whenever possible. I have intermittent absence at work and decreased hours which still leaves me mostly incapable of leaving my bed on my days off and laying down, if not micronapping, most of the day.
Due to this, obviously, I miss a lot of work which means significantly decreased income. I've been living off of store brand meal replacement shakes, pasta, and the generosity of my friends for so long I've been in and out of literally medically starving myself over the last year or so and my hunger signals are fucked which isn't great when I'm already recovering from an eating disorder and am already slightly underweight for my height and frame.
the credit limit on my card is 8k. I would love not to hit it because then I'll have no options left. Reblogs can go a long way even if you can't afford to send anything from your wallet. Help a disabled queer this disability awareness month.
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[ID: a credit card statement. The current balance is $320.88 with a minimum payment of $70 due July 11. /end ID]
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[ID: overview of my bank accounts. There's low balance alerts on both checking accounts, one with $19.45 the other with $5.16. My savings account has 21¢ and my credit card balance to pay off is $4,913.73. /end ID]
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disabled-dean · 10 months
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*going over mri results voice*: but they're sexy, right? They look sexy?
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