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Any Tildes users with small/not so small disabilities?
I've been pretty curious about this particular subject for a while. I have Tourette's Syndrome but I don't often meet people with Tourette's so there isn't a lot of room to get others' experiences. I didn't want to limit it to just small disabilities either because I see no reason to exclude bigger ones. I guess we can use this thread as a way to share experiences/commiserate
If there's a God, he deserves a cockpunch with brass knuckles for letting shit like this happen.
Oh Jeez. I dunno what to say so I guess I'll ask you this: With such a grave statement, what do you prefer people say in response? Do you care for "Sorry"s or do you prefer a "That sucks" and then moving on?
Yeah that power user tripe just seems like people being mad at people for being more active than themselves. Punishing users for making content is counterproductive and just fuckin' rude. Also fuck American insurance (I'm banking that statement on you being American lol)
Here's an "Oh fuck!" for you. :(
@Kat is a wonderful human being, and she's been open about the illnesses.
Sometimes, when I try to be more open with my mental health problems,1 I could feel a similar, less intense, moment of awkwardness. Like, "erh, it's obviously bad and I didn't expect this... I feel for you but... how should I go on... am I stigmatizing you...?"
Usually, I'd just like that I am welcomed as a person, according to our bond as humans, no more no less -- as I've been trying (but not always succeeding) to do to others. Accommodating the other's special needs according to my ability when such needs arise, in my view, is part of this bond.
1 The problems refer to depression and anxiety disorder that went untreated for years. I'd be reluctant to say it's a disability, although I can feel debilitated when the worse episodes hit. I can now take care of my special needs most of the time.
Out of all disabilities, I firmly believe that depression and anxiety are one of the most grave conditions one can have due to the way they are received and treated (or rather, not treated at all). Living with depression (and I think I may have been living with untreated GAD for years), it sucks that I can't really tell anybody I suspect I have it because they might think I'm a stupid, lazy millennial. Older people don't get it and others think you're a hypochondriac, but I can feel it. Everything gives me anxiety. Getting a new game makes me anxious when I start playing it and I have to put it down after an hour or so. TV shows make me anxious so I can never watch more than 2 episodes in a row. Hanging out with friends makes me nervous so I cancel plans. If I'm excited about something, I get more anxious by the day until the day comes and I'm no longer excited for it. Shit sucks, but nobody wants to believe it.
That really sucks. Hopefully, channels like this may allow you some headspace and self-expression, and let us listen to what you wouldn't have expressed otherwise. I hope you'll be feeling better!
I do believe there's a listening deficiency in our societies, and I'm grateful for this thread you brought up, where we can tune in to each other and listen.
Do you feel like seeking profession help for anxiety?
Oh for sure I've considered seeking help, it's just a matter of paying for it. I've been fighting health insurance for 5 months now and I finally verified my identity with them (being a clueless 20 year old, I don't have any credit whatsoever, so credit checks are a nightmare for me). I may be able to seek help soon, but the waiting absolutely kills me. Carve another tally into the wall for "American health insurance can bite my ass".
Good luck then! It's really unfair and unfortunate.
Wow, I have arthrtitis (hit me in me 20s) and spend every day in pain. But my pain is something I can learn to ignore and although it's tiring to be always in pain, it doesn't sound even close to what you're going through. I know what a burden pain is, but holy shit I'm thankful I only have what I have. Sorry dude/dudette.
PTSD, severe depression, bipolar, ADD anxiety and panic
Fibromyalgia.
Not a well known, or well known about, illness. (First official acceptance of it's existence in 1990). Everybody experiences it differently because of the large number of symptoms that you may, but not necessarily will, experience.
My list is:
And my meds handball me chronic fatigue, but keep the pain at a manageable level, except during a flare up.
My mom has fibromyalgia as well. Back when she was first diagnosed it was like a dumpster diagnosis with no real info available
Considering it still feels that way, I can't imagine.
Oof, I do not envy cluster headaches. That sucks, dude. But I do feel you on IBS. It makes customer service jobs kinda dicey when it hits
Had the need in the middle of an interview once. That was awkward.
Yeah I get cluster headaches and they are awful. People always think I'm exaggerating the pain. I used to get them all the time but luckily haven't really had too many lately. It comes and goes though.
Damn, that sucks. Super Narcolepsy or something? That's a super shitty ailment but you may very well lead the way to helping others with similar conditions as well. Don't give up, medicine gets more advanced every day and you never know what some scientists will actually discover
Damn, that's incredibly shitty in every way. Are you unable to get to sleep? Or do you feel like you sleep but don't feel rested afterwards?
Thanks for answering my question, I would like to get into sleep research in the future so I've read a quite a lot about the sleep disorders and it's very unsettling that nobody could help you. But thank you for sharing, your situation is something I'll probably keep in mind for a long time. I really hope you an get a good nights rest in the future.
I wonder if type 1 diabetes counts as a disability? Anyways, I got diagnosed with it last year at 17 y/o and it's been really hard trying to figure everything out and sort of change my whole life to cater towards this illness. Interestingly enough, the most surprising thing about this has been that I've eaten worse than pre-diabetes because all the unhealthy stuff has accurate carbohydrate counts as compared to healthy food which is often lacking any accurate nutritional information.
Represent! I got diagnosed two years ago, at 25. In the last year I got a lot better at judging things like rice, noodles and fries at a glance. Don't be afraid of the labeless stuff, start with a scale at home and after some time you'll get really accurate, even without the scale.
It's a really sucky disease by the way. Of course not as bad as some other stuff in the thread here, but it's up there and often it's suckiness is not very visible to others.
Oh, and also I'm an addict. Clean for over 6 years now. Another disability that's quite invisible and needs daily care, just like diabetes. Also a disease where some people think it's your own fault, like diabetes.
But I'm glad I've found tools to manage both.
Absolutely counts as a disability - it's a life-threatening chronic disease that requires a substantial amount of your time, attention, money, and energy to manage so that you don't suffer even worse disability or death.
My uncle died way too young from it, since there weren't good medical management protocols or the current variety of insulin versions. He didn't have to have his legs amputated, but it was a close call.
The good news is that the treatments have gotten much better and there are rumors of cures...
Meanwhile, take care of yourself and live as well as possible.
Hey Tourettes buddy! How bad is yours? Do you take medicine for it? I have tics on and off. Usually they are neck tics or I also have a coughing one.
Ayyyyy!!! I used to take Risperidone (Or was it Risperdal? It was the generic) but ultimately I found out that it was the cause of me sleeping away my Junior and Senior years of high school so I've been managing unmedicated (and experimenting with medical marijuana) since. I used to have only motor tics (Lots of eye tics, some neck tics, I had one where I bent over and practically bent myself in half standing up, I have some where I inflict kind of a small amount of pain to a certain area (hitting fingernails hard on a surface, occasionally punching above the knee), and the newcomers, breathing tics. I do a very forceful exhale for a tic (it's loud AND annoying!) and kinda constrictedly exhale through my nose. I have slight echolalia (saying words or the ends of my sentences over and over) and the copycat one (if someone coughs near me I must then also cough lol)
Damn. I use to have a similar one where I would continually bend over and grab my stomach and people would always ask if I had a stomach ache. I also had this one where I would blink a ton and sometimes and at night I could even hear myself blinking. It was a little disturbing but also sort of cool in a weird way.
Haha rad
Holy shit you guys just made me realize that all the other things I do are also ticks... Omfg... Is there treatment for this? Do you recommend I see a doctor? I have been living with this all my life and just realized if I could get rid of these ticks it would really be a nice qol change.
Definitely don't self-diagnose! Seeing a doctor would be a great way to clear things up and learn what is normal/not normal. It could be a form of OCD, or even just a bad habit.
I'd say to read doctor bios before you go in. Look for ones who list mental health as interests of theirs, because some GPs can be annoyingly dismissive of them (in my own, anecdotal experience.)
Oh no I have mild tourette's diagnosed by a doctor but I didn't realize that the squeaking noise I make, the itching of my palm, and the stretching of my wrist could also be symptoms. It was diagnosed by a doctor when I was young and my parents didn't pursue treatment.
You should see a doctor. Also 80% of people who have Tourettes have ADHD so if you don't know about that you might want to check that out too because most likely ADHD medicine could help you (or sometimes make it worse.) The short answer is there isn't really a treatment besides trying to relieve any stress you have because that makes it worse. Good luck!
Me. dysgraphia and mild tourette's.
Oh woah, I didn't know what dysgraphia was until today! Was one disability comorbid of the other, or was one caused by some kind of injury? I'm also very curious on how that plays out while typing. Is it difficult or is it specifically writing? Does the Swype thing on phone keyboards trip you up?
(Feel free to not answer any that you're uncomfortable with, I'm just very curious and I like discussing this stuff lol)
I'm just really bad at writing in general. Idk if thats due to slow learning because my handwriting is so bad and so slow or if it's part of the disability. My handwriting looks like a 3rd graders so it really sucks when I have to sign something because I always feel like I'm being judged 😋. It's weird because I'm supposed to be very uncoordinated but I played sports all my life so it's more in just the fine motor skills. For example I love music and always wanted to learn to play the piano or the guitar however I am really bad at moveing my fingers precisely so it's probably a skill I can never learn or it would take me a lot longer to learn.
The mild tourette's is something that I haven't really thought about to much. It's a facial tick and I always just tell people it's from allergies due to the stigma around tourette's. I also have never looked into treatment and it started in middle school. It might be related to stress because it picks up when I am stressed. If I focus on it I can not do it but it's like when you focus on your breathing, as soon as I forget about focusing on it, it returns to the standard tick.
Didn't get diagnosed with dysgraphia until after college. I remember being yelled at for being lazy or faking pain just to get out of schoolwork. Or being tutored just because they thought I was mildly retarded due to inability to write like the rest of the children.
However, playing guitar is not a problem at all, I highly recommend trying it again and practicing for a while. Took me a few years of leisurely playing, but it's highly enjoyable and you can do basic things without issue. I've even started to get back into handwriting and improving it steadily, 70% of the time I don't fall back to my 3rd grader scribble :D
Oh dope! I struggled with the piano and I know it wasn't lack of brain ability because I can play the trupet just fine. I guess I'll give it another try.
Pretty small I suppose, but I stutter and stumble all over my words whenever I try to speak in even a pretty standard, casual, stream-of-consciousness manner. That's caused me to become very quiet overall, extraordinarily deliberate when I speak aloud outside of close friends, and loathe & dread any type of public speaking.
I also suspect I have some degree of Temporal Lobe Epilepsy. But that doesn't affect my day-to-day too much these days; I've largely made peace with the symptoms I experience, and have even grown to enjoy the depersonalization/derealization over the years.
also I modified your tags per this post, which I think is a good idea
Thank you, I'll adhere to that in the future (please how do I make text small nothing's working)
Glad to see you've come to terms with the adversity you face! It's important to use what you can to your advantage imo. Whatever helps it hurt less!
That's superscript. It's created using HTML tags: you write "<sup>" at the beginning of the text you want to be displayed in superscript and "<\sup>" at the end.
So, for example,
"3<sup>2</sup> = 9"will display as "32 = 9".Its most usual use would be for things like mathematical equations, such as the example above, where the exponent "2" is written in superscript. However, because superscript is also smaller than regular text (as well as being raised up), people use it to write in tiny text.
Ahhh shoot, I hadn't considered that. I'm all mixed up about markdown and HTML. Thank you!
I have a stutter that I've largely worked through with many years of speech therapy. It used to be very severe. My way to deal with it is generally plan out what I'm going to say in my head before I say before I say it. It's not quite as straightforward as that though and took a ton of practice. Although a disadvantage of doing that is it's hard to jump into a gap in conversation so I often will give a response to a topic when people have already moved on to something else or accidentally interrupt people. Also certain things still set off my stutter such as being nervous, reading out loud or recalling something someone said, and if I've been interrupted or otherwise surprised/distracted.
You should check out reddit.com/r/stutter and also the very active Discord server that's linked in the subreddit sidebar.
Not sure if it’s a disability, but cluster headaches I guess. At least they present as such. I think that it is sinus related, but can’t convince any doc to investigate that line of thinking. It shuts one of my eyelids, and feels like someone is pushing out one eyeball. Probably the worst pain I’ve ever felt, including a broken arm.
Yeah, I've seen them called "Suicide Headaches," and I am totally not suicidal, but I get why they are called that.
Glad you got over it! I seem to get mine when my entire system is run-down. The one interesting thing that I've learned from experiencing pain like this is that as the pain goes away, it is almost like some endorphin release/pleasure. Really weird. I tend to take a nap right afterwards.
edit: just for clarity, when I get sick, or run-down it will start a month or two period where I get them daily around 6-8PM. They last 20-45 minutes.
Does colorblindness count? I realize it's nowhere near as grave as some of the others mentioned so far, but it's still a nuisance sometimes.
For sure! In a world that revolves around color, the inability to perceive even a fraction of that color can be an enormous roadblock.
Yes, and it's more common than we tend to estimate intuitively.
In our work we do a lot of graph visualization, and it's important for us to choose colour schemes and other visualization techniques wisely so as to minimize the inconvenience to colour-deficient readers.
oh hey, another Tourette's syndromer checking in.
Hi! This got rather long, but it was sort of cathartic to write it all out, so please forgive me.
I have chronic fatigue syndrome with secondary POTS (postural orthostatic tachycardia syndrome). I tend to say that I have "a chronic illness" when talking to strangers because some people still think CFS is fake, or just being a bit tired, or all in my head. (Mental illnesses and disabilities are totally valid, and if that were the cause I'd be all for treatment— but the research being done and some personal test results point to a systemic condition.)
When I first fell ill I had a ton of symptoms every day: brain fog/cognitive impairment, nausea, knees buckling when walking, heart pounding when standing, sleeping 12 hours but waking up exhausted, feeling vaguely feverish/like I was just getting the flu, sensitivity to light and sound, difficulty talking and eating when extra tired. Probably more, but it's hard to remember stuff from 13 years ago.
These days I deal with less symptoms day to day, but as soon as I extend beyond my activity limits current symptoms get worse and old ones return. For example, I started a job last week, and sleep has been much less refreshing than normal. I woke up this morning after maybe 8.5 hours and turning over in bed made my heart pound like I'd run a race. I'm also back to feeling low-grade nausea most of the time, which I'm hoping will subside.
It's significantly impacted many areas of my life, so I identify as disabled. My bachelor's took me 9 years part time, and even though this new job is online/remote (which means no commute and I can nap between meetings), my limit so far is 20 hr/week. I'm considering looking into SSDI (using credits from my previous part-time job) to help fill in the gaps, since if my parents weren't helping financially my health insurance premiums alone would be half my current earnings. But that's a long, stressful process, one that I am not very confident about "winning," so I have to balance the potential benefit against the damage that stress could do to my health.
I have to do a similar cost/benefit analysis with potential treatments. (There's no cure or even standardized treatment, but there are things you can try to regain a small portion of function.) I recently postponed one until I graduated because of the likelihood that even if it helped, I would feel worse at first. I'm glad I did, because it ended up making me feel so terrible I had to stop after 10 days. I'm supposed to try a lower dose now, but with a new job I can't afford to be out of commission for so long. I'm not sure when I'll be able to try again.
I don't explain any of this for pity— maybe this sounds depressing, but for me it's just life. This is just some of what I wish people (even doctors) understood about chronic illness. Yes, we want to get better. But especially with (currently) poorly understood and incurable illnesses, sometimes you just need to live your life as best you can instead of chasing a cure every minute of every day.
Man I hate it whent doctors do that. It's a major disservice to the folks for whom CFS is a misdisgnosis, plus it just furthers the misapprehension that CFS is a catch-all diagnosis and therefore maybe not "real." (I definitely think what we currently call CFS is likely a cluster of related diseases rather than one thing with a single cause, but that doesn't mean it encompasses things like sleep disorders or EDS, another thing that sometimes gets misdiagnosed as CFS at first.)
I feel like the idea that we have to get on with our lives is probably something that people without chronic illness/conditions have a hard time understanding. Other medical problems like cancer are assumed to be things you either "beat" or you don't. (That's a simplification since some later stage cancers can be chronic, but the cancer stereotype is a finite battle.)
I have Asperger's, I'm lucky to be very high functioning though. Depending on the day, it definitely impacts my life. If you have questions, feel free to ask.
I have it too. I spent years doing everything I could to hide and correct my behaviour, to normalise myself. I always wondered how others felt about that, is it wrong to try and change?
I never had a name for what was going on, and constantly tried to fit in. My experience is that there are hard limits on how much cognitive energy it's worth expending to act "normal".
Politeness and courtesy can be learned - there are reference books. You may seem stiff and formal, but you will avoid accidental unkindnesses, which are what most people really take offense at. I like to think I've improved formal (often gendered) courtesy by finding efficient ways to be more helpful. It's not the same thing as naturally falling in with people, but it gets you defenders.
There have been some very positive experiences with segmenting my excessive enthusiasms - for example, I don't have to be an etymology geek all the time, only among other people who love the origins of words.
I suppose it's very much a disability to have to think through everything that seems to come naturally to the vast majority of people, but knowing who I am now, I don't think I would have ordered things otherwise.
I'm guessing we're going to need a subgroup...
Very probably high-functioning ASD, just never diagnosed because when I was growing up, no one thought to look for it in girls. It was pretty much, "this is a weird kid". Even in middle age, I'm still awfully awkward at difficult tasks like appropriate eye contact, avoiding perseveration, and remembering the names of people I see every day.
There are specific terms for some of the other oddnesses now - mild dyscalculia (advanced math is beautiful, but arithmetic is jumbly), misophonia, perfect relative pitch, synaesthesia, extreme introversion.
Rhythms, patterns, and complex systems are fascinating; I'm a reliable troubleshooter because I'll spot an inconsistency or correlation that no one else perceived. So, in an economic sense, I'm not disabled, but it can be socially isolating and psychologically painful. Again, I'm not that badly disabled socially; I have a few deep friendships, a spouse I cherish, and a budding bad social media habit in Tildes, since for the most part, the community isn't discordant.
Huh. Any difficulties doing your hobbies? I play vidya and guitar quite often and that would throw a serious wrench in reading tablature for guitar playing
God dammit man I swear clamshell packaging should be outlawed everywhere. How are you supposed to open those without hurting something?
Maybe consider a less complicated instrument if you're not as dexterous? Drums could work I think, they're mostly muscle memory and knowing where your loud things are, or maybe something small like a Stylophone or Melodica? Not exactly well known or prestigious instruments, those two, but they're fun and improve hand eye coordination, no matter how slight.
Auditory Processing Disorder. My hearing is perfectly fine, mechanically speaking; above average in fact. Speech just comes through as a garbled incomprehensible mess because shit isn't wired correctly.
It's not incredibly debilitating, but it does kinda suck. Lots of asking people to repeat themselves, not being able to do much in online games, constant miscommunication issues at home/work, dealing with the terrible subtitles on Netflix, etc.
I have a debilitating panic disorder. It can manifest itself in many ways, but the worst days are when I'm on my couch stuck in fight-or-flight for hours at a time, thinking I'm going to have a heart attack or a stroke, afraid of moving - it's like night terrors except it's waking.
If I think about eating while I'm eating, I'll wind up choking or inhaling food wrong, so I'm stuck on eating the same foods daily - oatmeal for breakfast, turkey sandwich for lunch - every single day. Sometimes I explore with my food choices and wind up being unable to finish more than a few bites.
I also tend to have a really addictive personality when it comes to any drug that relieves anxiety - long history of drug abuse. Trying to stay clean now, to some success. Shrug.
I have a well paying job and people generally like me, but I convince myself that they hate me privately. The only person I can speak to about this is my therapist - I realize that I'm lucky to be capable of affording one. Most people with this disorder aren't as privileged as myself.
This somehow makes it worse, knowing that there are people out there who can't leave their homes without feeling like dying, with no access to help.
I was born with necrotizing endocolitus, so I am missing about 75% of my gut (in actuality it's almost the entire large intestine including the ileum). I was extremely lucky, considering that the small intestine is the one that does the most important part.
It's hampered me in a myriad of minor ways, for example, at the moment I'm following the FODMAP diet because I had a couple of years of constant discomfort and socially embarrassing flatulence (which lasted, coincidentally, through the mid to the late teens >.>), it hit a point where I thought I was overweight, simply because of the sheer amount of wind in my stomach.
It also means regular (yearly) blood tests to make sure that my gut isn't rejecting any vitamins or minerals. I tend to take a multivitamin now and then as a 'just in case'. Previously I've been found to be deficient in the most interesting minerals, such as copper (which makes your hair go weird!), selenium (you should eat fish once a week), and zinc (of which the amount was so slight, my specialist at the time recommended the best source was to partake in dropped food off a (clean but dusty) floor).
I was also diagnosed with celiac disease (with wheat intolerance!) when I was an infant [although there is new and current war between the dieticians and the gastroenterologists (who are... surprisingly less informed as you would expect them to be) as to the exact diagnosis!], which has led me to be really subtly excluded from many places purely through having no place to eat. This really isn't a problem at this stage, it's not something I really notice any-more (The FODMAP diet has been far more irritating to keep to!). The main impact this has had to me is that eating out is extremely irritating, and more trouble than it's worth (Cross-contamination, and 'gluten-free' things that include either wheat, barley, or oats, are a big problem for me).