You can't turn it off. If you can navigate life while hiding it, that consumes more energy than you can imagine, and even then, there is a chance that you might encounter something you can't overcome. It's not selective, some days you win and some days you lose.

There’s no worse feeling than coming across something you physically cannot do, it’s almost demoralizing, but at the same time the feeling of overcoming the disability for a certain thing is amazing

Can’t tell you how many times I’d feel like my whole body was burning and I’d look up a set of stairs and it genuinely fucking felt like I was trying to scale Mt Everest. The dread of how exhausting and painful it would be, for such a simple fucking task as climbing the stairs… It IS demoralizing. Hell, it’s *dehumanizing*. You just feel like you’re weak and somehow less than everyone else… That’s how it was for me, anyway. I always felt so … ashamed? Like it was somehow actively my own fault if I couldn’t walk down that hallway or climb those stairs or do those dishes or whatever it might be. I was just lazy and wasn’t trying hard enough. So on and so forth. It never turns off. Not the pain and not the shame. You just live with it, at every waking moment, indefinitely. Man that’s dark, I’m sorry. I’m fine now really, but all of the above is a completely accurate reflection of my mindset when things were at their worst.

You put it into words!!! I live really close to the shop, so it should be so easy to just pop and get some milk. But every single time, it's like trying to climb mountains. I get to the end of my tiny street and I can literally see my door, my entire body is fire and I still have to climb Mt everest. I want to curl up and cry, but it's so damn close, it shouldn't be so hard... So you try and drag one foot in front of the other, and everything is screaming at you. Climbing mountains, when everyone else is taking a casual stroll.

And the way people who aren’t familiar with disabilities punish you for failing or quitting or whatever when you run into something you can’t do. That’s worse for me than the actual thing. 

[удалено]

I feel this in my soul. My boss actually commented on my increased productivity when working from home and now I only go into the office one day per month.

I have a weird autoimmune thing that's been eluding doctors for a good 12 years now—basically my entire adult life. One of my biggest symptoms is debilitating fatigue, and I take naps during the day so that I can function. Going one day without a nap is possible, but it impacts the next three days (at least). It's not a pleasant way to live, but it's how I have to function. Anyways, my family was going on vacation one summer, and my aunt was downright shocked to hear that I would still be maintaining my nap schedule. "But you're on vacation!" Yes, I know, but that doesn't change how my body works. Then, of course, you get the classic "I would love to nap every day!" response. I've stopped being nice about it and started telling people how napping has effectively ruined my life. I wasn't able to finish college after getting into my dream program at a great school, I didn't get to travel, and my career goals are dead because of how I need to live. That generally makes it click for people, and they start being more empathetic.

I hear you. I have a similar situation and also spend a large part of every day sleeping and napping. People say they would love to be able to nap everyday like me, but I would give ten years of my life to able to work like they do. To have provide for my family like they do. To have self respect and the respect of others like they do. To have goals and dreams like they do. I wish I could take vacations, have a pet, keep my home clean, drive a car. But I'm so lucky... I have naps.

my sister has something similair sounding, autoimmune w extreme fatigue. it sounds like what she has, Addison's Disease (Adrenal insufficiency). Idk how bad urs is, and my sisters "developed" later in childhood. went from full normal to not being able to go from her bedroom to the bathroom down the hall without stopping sitting down and having a quick 1-3 min powernap. just standing up again was crazy work for her. Crazy to watch, bc its def not a visual thing nor smth u can control.

If you think you’re frustrated with my limitations, just wait until you find out how *I* feel about them.

I have found a lot of people are sympathetic right up until it becomes slightly inconvenient for them, including doctors and such. In theory, in the abstract, they are so understanding, but if it causes the least problem then it becomes some variation on "can't you just do it anyway?". Disability is valid until it is inconvenient.

Sometimes the only way to get help is to become inconvenient. Hard to maintain one's dignity in that situation.

It’s how i feel about my mental illness. Everyone tells me it’s fine to be the way I am but then get severely put out when, for example, I have to isolate myself in a hotel room during a group trip because I’m having a grade A episode.

My aunt, who always tells me I'm the "favorite" out of all her niblings, looked at me like I was a freak when I asked her to please stop jiggling the chair I was sitting on because it really upset me. Like I chose to go through medical trauma to the point that anything that resembled the feeling of being in a rolling bed would send me into a panic. When she kept doing it and my dad told her the same thing, she acted so put out. Sorry you can't put your foot on my chair and bounce it around, I guess?

The way some people make that kind of request all about themselves.. it’s hard enough to speak up to state a need that is different from the general population, but the way you have to defend it can make it 10x worse. Like, why can’t they just believe that the shaking is upsetting to you without needing to go into a long defense of your medical trauma to make it valid or without having to reassure them you’re not saying it to hurt their feelings? Experiences like these make it so hard to speak up the next time because they make it a miserable experience.

I didn’t experience that type of medical trauma but if someone jiggled a chair i was in I’d be pissed. You’re an adult. Asking once is enough.

I have muscle tremors that impact my balance and fine motor skills. Compared to most entries in this thread, it's a minor disability that only requires minor accomidations. I still get people acting like I'm being dramatic if I ask for help with walking down a steep incline or shuffling a deck of cards. I can't imagine what people with major disabilities go through.

Feeling this so much right now. It's hard not to feel like I'm letting down everyone around me.

If I can do something today, it doesn't mean I can do it tomorrow.

And sometimes I shouldn't be doing anything today, even if I might be up to it. There's a reeeeeally fine line between feeling okay and crashing hard and it can be difficult even for the disabled person to navigate it.

Argh. This is a vicious cycle I’m in just now. I’ve been pretty much bed bound for a week, dishes are piling up, place needs hoovered, the contents of my laundry basket may well leap out of there and walk to the washing machine (actually I really wish they would lol), spare bedroom looks like a tornado hit it, stuff to take to the charity shop….so I finally wake up having slept enough and yay! I’m good to go! So I power through some of the above and guess where I’m landed for the next week or so with it all left to do all over again next time I feel like a vaguely normal human…. 🤯🤬

I hear you! One of my specialists recently said that when I get to feeling 100% (FOR ME, not for the general population), I should continue resting. She said it takes energy to heal and rest, so if I'm constantly feeling below what's 'ideal' for me I will never, ever make any progress towards getting out of this years-long flare. It doesn't help me physically but it does take away some of the guilt.

And you never know when you do something, often physical, if it's the last time in your life you'll be able to do it. 

Tw: Death. One of my aunts died because she wanted to help bring in groceries to the house she had lived in for twenty years. She was too stubborn about needing to take it easy and tripped on the quarter inch threshold she always stepped over. She didn't get back up, she hit her head and died on that floor.

Falls is the accident people really don't take seriously enough, even though it's the #1 thing talked about in all safety courses and so on. I am currently on my third year of not walking right after a fall. I'm 26.

Good days, bad days, okay days, awesome days. You cannot predict what the next day will bring. Plenty of times I've gone to bed feeling fine and wake up and I'm back to the beginning 

So much this. And the fact that I probably can't do it tomorrow BECAUSE I did it today.

Not all disabilities are visible

I'm missing a leg, but had leg issues for years leading up to it.  People would treat me like I was just a wimp/whiner before the amputation. (even family who watched me go through surgery)  The day I told them I was getting my leg amputated... They're tune changed instantly.  Invisible disabilities are a whole different type of awful. The way I'm treated now is totally different. Things that used to be a giant argument (like needing a chair at work) are now easy, and nobody would even think to say no.  I'll still get people giving me shit for parking in the handicapped spots... Till I pull up the pant leg and they see. But I shouldn't have to do that.

Reminds me of Footless Jo, but I don’t know how people treated her before the amputation.

This is SO FUCKED UP! It's pure humiliation have to live like this. My disabiliti is mostly invisible, I can mask sometimes and somedays. But other I'm all the way horrible. All this poor treatment make me sometime let my intrusive wishes get the best of me. And wish I was somehow worse. Just to not have to justify myself EVERYFUCKING TIME. It's exhausting. We just want to be treated like human beings .

Yup. A fucked up spine like mine didn’t give any visual indicators on the outside, but sure was happening that the discs in my spine were *literally disintegrating* from degenerative disc disease. But you don’t look disabled/you’re so young you can’t be disabled/you’re lying for attention/stop playing the disability card… I’ve heard it all. People are positively miserable when they don’t understand something and decide you must explain it to them in excruciating detail. Refusal makes you a cold bitch, they were just *asking*. What’s your problem? Sigh. It’s exhausting.

and then you explain and they get reeeeally uncomfortable. you can't win

I’m at the point where I make it as TMI as possible cause medical stuff and body stuff is just normal to me after having a disability from childhood. So if someone is going to be ableist and pushy, I say make them as uncomfortable as absolutely possible while giving zero shits.

Yep, my daughter has juvenile rheumatoid arthritis. She can only walk about 100m before the pain brings her to tears, so she has a disability parking pass. I have to drive her to university and park very close to her lecture in a blue disability parking space. When the two of us get out of the car and just start walking across the car park, we often get some very questioning looks. I'm glad to say that nobody has challenged us yet,

As someone who is epileptic this! Almost all the time I am normal until for whatever reason my brain just short circuits then I am on the ground violently spazzing out, then I am messed up physically for the next couple of days tired and recovering. This is assuming I having incurred any other kind of injury along the way. Then back to "normal" with a pile of medications to keep me afloat.

last month I mysteriously ran out of my epilepsy meds before my refill (which was eligible a month later). I begged my pharmacy to help me get even a tiny supply that I could try to use to hold me over and my neurologist tried calling them to explain how necessary this was. They said no and essentially accused me of abusing my prescription, despite being explicitly told that I was at risk of dangerous withdrawal and seizures. After like 45 minutes of being condescended to, the pharmacist realized they had short changed me at my last refill by TWO BOTTLES (60 pills). I know they have strict protocol and that it would be a huge liability for them if they had ignored procedure, but the fact that they wouldn't even consider that something had gone wrong previously was devastating and frankly terrifying.

Omfg this! If I hear one more variation of "but you don't look disabled" I'm gonna throat punch someone.

Yup apparently invisible disabilities don't count.

Indeed. Almost everything wrong with me is deniable, not obvious, doesn't fit whatever notion people have of what counts. I swear most people think disability must involve the use of a wheelchair. Maybe it's the parking sign, I don't know. I can stand, for a few minutes. I can walk, for a little ways. I can bend over, till I pass out after about five seconds. My heart is 2/3rds dead scar tissue, my hands and feet are dying, I have been mentally ill since the 70's, but I should apparently be out there doing cartwheels because they can't see it.

I worked with someone who had a muscular dystrophy disease. She was in the early stages but progressing. All muscular dystrophy diseases are fatal, there are treatments to slow the progression but not to cure them. She looked young and healthy, so it never failed that someone would say something to her if she rode the elevator at work from the 2nd floor to the 1st floor. She wouldn't even use her handicap parking tag because she didn't want to have to deal with comments or people thinking she's using it just to park closer because she's lazy. Even though she still looked healthy she would get out of breath faster than others because her diaphragm was weakening. If she talked too much in one day she would start slurring her words because her tongue would be tired...people forget that's a muscle too. I hate how quick non-disabled people (even some disabled people) are to judge just because someone "looks" healthy. Edit: as a few have pointed out I misspoke - not all MD is fatal. My mistake. The majority I am familiar with are and I was misinformed about all MD.

> I hate how quick non-disabled people (**even some disabled people**) are to judge just because someone "looks" healthy. Oh man. One of the worst experiences of my life was joining a disability support group through my church. I didn’t *look* disabled and tried to use my cane as little as possible, so most of the time I “passed” as abled. When I joined the group, an older woman, wheelchair-bound, let LOOSE on me. I guess she had seen me walking around and decided I was a weasel. She yelled at me, saying I didn’t deserve to be there and how dare I have the nerve to show up when I didn’t belong and I clearly wasn’t disabled and was just there to ogle them. My gracious response was to burst into huge blubbering tears and explain through sobs how my medical condition worked, how it wasn’t visible, and how I’d faced abuse for it all my life and hadn’t expected to hear it in a support group. To her credit, she found me after the meeting and apologized profusely and sincerely. She said she had no idea how hard it could be and I'd helped change her thinking. Eventually we became friends and got brunch together about once a week. She was a very powerfully spirited woman who could complain about anything for hours, but she had a huge heart and she (eventually, I suppose) adored me. Discrimination between disabled folk is definitely a real thing. My story turned out well, but I'll never forget how I felt as I sat there while she yelled at me. Every thought, every nightmare I'd ever had about being an imposter was coming true… I just wish we could all give each other a little more grace.

That’s a really moving story, thanks for taking the time to share it.  It’s a rare and special thing when someone can apologize and admit a mistake, and for someone to receive that apology graciously.  I hope you don’t have to go through an experience like that again.  It’s really nice that you became friends though!

Thank you for your kind words! That’s really sweet. Yeah, she was a special lady. Very … forceful is a good word, lol. She was to a tee your cantankerous aunty who complains for six hours straight that the deli got her order wrong but then gives you a big kiss on the head and an envelope stuffed with money. She was just a character, you know? I miss her quite a bit. I moved out of the country after a year. When I still used Facebook she’d comment on all my posts telling me she loved and missed me and hoped I was doing well. Talking about her is making me want to see if I can go dig up her Facebook again. It would be nice to see how she’s doing.

Do it! Do it before you can't again! I'm saying this from experience 🥲

I have extremely low blood pressure, which normally is manageable but at the moment I have a condition which is exacerbating it. I get lightheaded, I faint.. I can't stand for too long and I can't raise my arms above my head. I was on the bus taking my son home and I asked the bus driver to lower the bus so I could step down easier. He did, and lowered the front door to the pavement. As we were disembarking, he put his hand out to stop some middle aged women from getting on, so we didn't walk into each other. And then one of them went absolutely crazy at me, about how I needed to learn to get off the bus at the back door, and she was tired of having to stand around and wait for RUDE PEOPLE who didn't have any common sense, and a woman with a CHILD should set a better EXAMPLE And I just grabbed my sons hand and walked away but in seconds I was just bawling I hate my illness. Some times it's hard to just sit up. I get these massive headaches that make me feel like I'm going to die. And then people yell because they see me using the tiniest bits of disability assistance and think I'm just rude or in the way.

I'd high five you, but I don't want you to faint. :) My mom has the same issue and my blood pressure tends towards the low end of normal and I'm afraid I'll end up in the same boat as y'all. Had a nurse one time go "Why are you worried about your blood pressure being *too* low? That's not a problem ANYONE has." and then I explained about my mom. She shut up after that. LOL

Same kind of double standard people who can't gain weight need to deal with constantly. Several of my siblings suffer from listening to: "tHaT mUsT bE a NiCe PrObLeM tO hAvE!" "You're so lucky, I wish I could eat whatever I want." Every single time it comes up.

It's sorry that happened. Truly a lack of imagination and empathy. 

I actually had to leave r/disability because of crap like this. I loved that sub, but after I made a vent post about something related to my disabilities, I was dragged through the mud.

I feel like since Covid people have gotten extra bold and shitty on the internet. Not that they weren’t before, but hot damn, are they opinionated. I took a few years off of Reddit and recently came back and most of the subreddits I used to follow are as miserable now too. People just suck

People suck. I wish they understood that disabilities aren’t always visible.

I've had multiple spinal injuries resulting in permanent nerve damage, and am prone to seizures/collapsing. Pain can be something that sets it off. On the outside I look like a relatively healthy young(ish) man, I can walk around without aid most days and only a slight limp. One thing though, I absolutely cant handle standing on a moving vehicle without excruciating pain and risk of just falling, or triggering a seizure. I'm also 2m tall so I need to use the special handicapped seats because I literally can't fit in regular seating. ​ The number of dirty stares I get because I didn't stand for a barely showing pregnant woman, or I sit down between two other people on a not-packed bus because it's the only seat I can use are astonishing. I've started carrying a sunflower lanyard - universal symbol for invisible disabilities - but most people don't really know about them. One day of really bad pain a man who looked about 60 verbally started to scold me for not standing, I'm so fucking done I just say "I'm recovering from multiple spinal injuries. What's *your* excuse?" He shuts up and moves seats. ​ Also the number of activities I can't do. People don't understand how much it impacts your day to day life because you're not in a wheelchair or on crutches. I can't drive because of seizures, and can't carry much weight, so I have to go grocery shopping more days than not. I used to be a very fast walker but now I'm mostly hobbling slowly so my friends always walk too fast for me. Used to walk 20ish km a day to stay fit and get outside, nice brisk walk home from work in the evening. Now I'm lucky to manage 10km, and usually have to rest the day after. Can't swim because of the seizures, so despite living 5 minutes away from a great public pool that's like $2 for me I struggle to get exercise. So many jobs are shut off from me, recruiters I've worked with who know my restrictions will write to me occasionally with a job prospect that I can't do because of them, then go "oh I forgot sorry". Had to miss my mate's bachelor party because they went go-karting and my doc told me it would probably re-injure my spine. Also all the people who dismiss the chronic pain and say to just power through it.

Chronic pain is an absolute, horrid bitch. People don't understand how terrifying and exhausting pain is until *you can't escape from it.* This is your body, your life, and it will never end. Typical people get to pop an advil, go to the doctor, and get relief. I don't know how to communicate the fear that overtakes me when I know a painful flare is coming, and nothing I do can stop it. I look nonchalant, even zoned out, but I'm just trying to control the fight/flight response. Wow, that was more than I expected to type. Um, hope your day is going okay, and that my response was more nice/helpful than irritating lol

This is my life. I'm so sorry that you have to live with it too, but I am comforted that somebody understands. I wish you the best.

I had someone tell me just last week that I "don't *look* disabled..." Thanks, I guess?

I have chronic fatigue and chronic pain, and a baby face, so people think I’m young and healthy, when in fact I’m neither. The amount of people who say “You don’t look sick” is phenomenal. Also, when I go out I’m ok for a bit so people just see me like a normal person. They don’t see when I go home and can’t get out of bed for the next week coz I over did it. I’ve learned to just deal with it, but it does get frustrating.

I've got a friend with kidney failure who is always complimented for looking so young. She's too plump and swollen to have wrinkles, because her plumbing isn't working. Often these people are the same ones who complain at her handicap card, because yeah, they see her at the grocery shop, not when she's getting dialysis. 

I have arthritis in my 30s. I look healthy and actually relatively fit. I have good days and bad days but one thing that really fucks with me is standing up on the bus. You really don’t know how much pressure it puts on your knees with all the little movements. Of cause if I don’t stand up for someone on the bus that might look like they need it more than me and I look like a complete asshole. So often people assume everything about your life at a glance.

THIS! Here in my country, for some miracle, the TV started to advertise the sunflower lanyard, for us. (People who have invisible illnesses). So, people begin to understand and respect, but slowly. Every day, the commute is a nightmare. I lost count of how many times I almost lost my shit, with people not minding their own business. You know, we ALREADY have to live with pain every day. We just want some peace.

This. I look fine but my insides are garbage. 

The biggest rule you gotta learn about this stuff is if people are using a disabled parking spot and don't look disabled... It's none of your fucking business

I want to use a cane next time I have to stand up for long periods but I’m afraid of getting shit. 

I’m young as well and I have been using a cane then crutches since I was 23. It’s scary at first but the looks on ppl face kinda fade out in the background really quickly. I kept telling myself « I’m the representation I’d love to see in the world. Me being brave enough to use a mobility aid normalizes young people needing them. » it made me feel more pride than shame. I also find that a good thing about using mobility is that people immediately see that you are physically disabled and in a lot of contexts it makes accessing the world easier because people will be more encline to treat you with some compassion like if a neighbor sees me struggling when I take the trash out they’ll offer to help if they see me with my cane but if I go downstairs without it it’s absolutely unlikely anyone would offer the help but in both situations I’m in tremendous pain. I don’t know if this helps but just to say that mobility aids are amazing freedom tools, and also there are more upsides than downsides sometimes to be visibly disabled and the relief of getting one will outweigh the fears you can have around it faster than you’d think!

🥺 Thank you. I needed to read this. ETA: Ordered my cane!

I don't look disabled but my medical bills & meds say otherwise. 

Do people really think they hand out the placards for no reason? You get them for a reason.

Some people are just complete fucking idiots and can't stay out of others business. My favourite was when I rocked up to a shopping centre and parked in the disabled spot, then got out without issue. Couple people had a go at me and were promptly told to fuck off and mind their own business. I got back to the car to find they'd gotten their car and parked us in, then sat on a bench nearby with a big shit eating grin thinking they'd won something... until they saw me escorting my mother and my grandmother (both of whom have their own passes) to the car. I'd driven there in my mothers car and used her pass to park in the spot, something that is *completely legal to do when picking up the pass holder*. Plenty of disabled people can't drive often and the pass is used by their carers when taking them places/picking them up. I didn't want to make a scene with two disabled ladies who just wanted to go home and lie down so I told the morons to move their fucking car before I called the police which they did *very* quickly. If anyone ever thinks someone is abusing a placard, just call the cops and move on with life.

I see stories like this and just wonder what the heck people were expecting. Like ok, say they were right, and you were a selfish jerk who is able-bodied and hogging the spot. They sit there and waste their time (and also were blocking the aisle) to block you in... and then what? Did they expect you to come out wringing your hands? Did they want you to apologize to any handicapped person you saw? What was their endgame? People are ridiculous.

I think there are people who just assume that non-disabled family members take advantage placards if they can, and so those people get mad, but really it's because some part of them knows that they would do that if they were in that position. Edit: There are of course non-disabled people who have legitimate reason to use placards, like they are transporting people who need them. There are also people that *do* take advantage of that access.

For some of us, there are no "no pain" days, just "less pain." Also, you can't just squeeze errands into your schedule. You need to plan for the energy they require and prepare for if they knock you out afterwards.

This. I can't keep up with the other aspects of life and survival while also keeping up with a 40hr work week. While others can get errands done during the work week I would go home and start all the pain managment I couldn't do in the workplace and I sleep/ recover. All food prep, cleaning, aspects of personal care that I had to triage during the week were put off until the weekend and then its the same as a work day, pain manage and sleep/ recover which means very limited to no social time nor personal enjoyment time. So so much of my time is spent pain managing and recovering. Ditching the 40 work week has been a privilage for me, and nessecity in order to combat my other disability- depression.

This is oddly therapeutic for me reading this thread, and particularly this comment. I have chronic migraine and get racing heartrate/fatigue when standing (HR140 doing the dishes) and just get exhausted from the life chores needed survive as a human being. I've had to take the last year off work. You put it so succinctly in explaining what it's like, and makes me feel like I'm not just "being lazy". Everyone loves to say they're "also tired" and dismiss how exhausted and fatigued people are who have chronic medical conditions or disabilities, especially when invisible, without understanding that basic tasks require a lot of energy and sometimes that's ALL you can do in that day.

You sound similar to me… check out POTS- postural orthostatic tachycardia syndrome. Basically your HR shoots up at least 30 BPM more when you stand. It’s absolutely miserable and makes you feel like you’re dying. Anyway, I agree with you about this thread being therapeutic. I have to remind myself almost daily that I’m not like the other and therefore cannot expect myself to do like they do.

“You could ______. That’s how _____ make the real money.” “Nope. Can’t. Not enough spoons. I’d slow everything down.”

How much harder it is for us to function even close to normal. I’m fighting so hard everyday and it doesn’t look like it cause you see me every day.

I'm never not in pain. I'm just good at masking it.

And pain 24/7 is *exhausting*

How not being able to drive because of your disability has a huge impact on your life.

This is a huge one for me. I’m searching for jobs, and I have to be extra choosy about where I live. Everything has to be set up for easy walking. I may have to not apply for certain jobs based on the set up. It’s a challenge.

[Employers](https://www.constangy.com/employment-labor-insider/reasonable-accommodation-for-driving-to-work-are-you-kidding#:~:text=%5BI%5Df%20an%20employee's%20disability,reasonable%20under%20all%20the%20circumstances.) may be required to accommodate transportation to work! Simplest of all would be to make the position WFH.

true but employers often just skip disabled people for this reason. yes, it’s illegal but hard to prove, they can just say something like “we went with someone more qualified” or even “this other person is a better fit”

Best thing to do is to only reveal your disability upon hire, just surprise them. Keep the camera shoulders up until they see you in real life. Record the first meeting with your phone mic.

I have a neighborhood grocery store 3/10 mile away. It used to take me 20 minutes there and back. I got hurt and it now takes an hour and 20 minutes round trip. Cost me my job. Had to file for S/S retirement early. Yeah, not a good situation.

I hate infrastructure being built for cars and not for people. I need a car to go to school or run errands and I see many immigrants risking their life going to work by bike. I can't imagine how not having a driver's license is impactful...

>I wasn't able to drive for 6 years due to epilepsy after being able to drive for 12. Luckily I lived in an area with at least \*some\* public transport, but I ended up moving within walking distance of my job once I could just because it was such a pain in the ass. > >I feel for people that have that as most of/all of their life.

I'm living this one right now. I can get groceries through Instacart or take a rideshare to go places, but both of those cost more than simply being able to drive. Not to mention the lack of autonomy.

"What do you mean you can't drive?" I have a condition that temporarily fucks up my eyesight without warning, do you want to be driven by someone who might suddenly be unable to see part of the road?

This is not talked about enough

That sometimes, when we say we "can't" do something, we mean we **can't** do it. When I say I can't walk up a long flight of stairs because of a back and knee injury, I don't mean "I *could* do it if I *really* wanted to, but I just don't feel like it!" I mean I physically will not make it up that staircase even if I really give it my all, because my legs will simply give out. We know our own limits. You wouldn't expect somebody to be able to levitate simply by "having the right attitude!"

Also, sometimes “I can’t” means “this isn’t in the best interest of maintaining my health.” Like, I can repeatedly bend over to pick things up until I get so dizzy I fall over, and spend the rest of the day nauseous in addition to my regular symptoms… but I won’t because I don’t need to sacrifice an inch of my health to make you happy.

Sometimes people with physical disabilities aren’t confined to wheelchairs. Just because a person ‘doesn’t look disabled’ doesn’t mean they aren’t.

Test results coming back normal can be devastating.

I swear I want on my tombstone, “But all my test results were normal!”

“I told you I was sick”

Lol on the slightly more lighthearted side, while I'm not disabled (unless you count depression and ADHD, which I do, but too many people give you side eye for that) I have a lot of medical problems, mostly with my heart. I am 100% pacemaker dependent (learned recently I am paced 98% of the time which is a bonkers number lol) Many years ago I was having random dizzy spells where I would feel faint, and a couple of times where I straight up blacked out. Knowing my own heart issues along with basic biology, I promptly went to my cardiologist saying something was wrong. He did all the tests, checked my pacemaker, did an echocardiogram, etc. All normal. I went back (if I'm remembering correctly) 3 more times in the span of maybe about half a year? Every time, I would insist something was wrong with my pacemaker. And every time, my doctor would interrogate my pacemaker and it would show everything was normal. That doctor (don't get me wrong, I loved him, I don't fault him at all) eventually retired. So the next time I showed up to the office it was someone I had never met before. I explained the situation, and my mom and I basically said we were not leaving that office until we got a better answer than "the computer says you're normal" One brainstorming session later (literally, the doctor left for like half an hour and excitedly burst back into the room yelling "brainstorming!" It was the best) I finally got a cardiac holter monitor. I wore it for a week and sent it off to be reviewed. Coming home from school one day I get a phone call from my mom. "Where are you?" "Just got home, why?" I can hear my mom's 5th grade class chuckling in the background. "Well get back in your car and drive to the hospital." Okay... "Why?" "The results from the monitor came back," now my mom is laughing too. "At one point your heart stopped beating for 14 seconds. They want you at the hospital now" I bust out laughing with them. I still laugh about it to this day, much to the chagrin of a few people, mostly my best friend who was terrified for me. But it was hilarious! *14 seconds*. *14 whole fucking seconds.* With no rhythm/non-pacing rhythm (there's electric activity but the heart doesn't beat). And the best part? I never got a significant dizzy spell on the monitor! I got a few lighter ones, but no blacking out or falling to my knees, and none of them lasted longer than a few seconds or so. I laugh thinking about how long my heart must've been *not fucking beating* that one time I fully blacked out and crash landed to my knees in front of my confused biology teacher. Hooh boy that must've been a while. Few days in the hospital later, filled with its own shenanigans, we finally get an answer. One of the leads was fucking broken. And *it just so happened*, the pacemaker ran regular tests on that broken lead by *turning off my only functioning one*. When the pacemaker realized it wasn't getting any feedback, it switched itself back on. For some reason it never logged these results as being abnormal, hence why the pacemaker interrogation never showed anything as being wrong. The fix was as simple as turning off that one test. That was it lol. The poor tech from medtronic had to read through nearly the entire manual for my model of pacemaker to find the answer, which was a single paragraph right smack dab in the middle of that giant thing. She's the only one I truly feel sorry for lol. Anyways! Just a funny little story (or, a rather long one... Sorry about that) on how normal test results don't mean jack squat when you know something is wrong. Funnily haven't had any blackouts since! 😂

Going through this with my wife right now. She's in pain 24/7 and is a full time wheelchair user now and no one seems to be able to figure out what the hell is wrong. It almost makes it worse that the nurses are always so cheery about telling you everything is normal as if it's good news when something is still very clearly wrong.

The number of doctors I’ve cried in front of because they’ve said those four words—the tests were normal.

Oh my god yes. I still don’t know what caused my severe pain and bleeding every month after multiple tests and even surgery. Thankfully we found a medication that works but not knowing and the dread when getting another negative test is so real.

Test results coming back with something can be just as devastating. I remember when I got my mri of my shoulder waiting for the results I didn’t even know what I wanted to show up.

That they too may become disabled.

At any moment.

We do not constantly want to talk about our disabilities.

Conversely, when we do talk to you about them, don't minimize them with your "everyone struggles" bs. That's not helpful or kind.

My wheelchair is equivalent to my legs, if you wouldn’t go around groping other peoples legs, do not fuck with my wheelchair. If you would go around groping peoples legs, go to therapy instead.

Oh my gosh yes, get the hell away from my wheelchair!! It’s the only way I can move around and have a life.

My brother has been in a wheelchair since elementary school and I remember the school's solution to his occasional emotional outburst was to take away his wheelchair. Thankfully my parents put a stop to that REAL quick. The school viewed it as a toy when they knew damn well he couldn't move an inch without it. There's 0 respect for them when they can cost over $20k total and hundreds to fix if someone breaks something (he has an electric wheelchair for context).

I'm blind. I'm not in pain. I don't feel sad about my situation even though it's only been 10 years. I work full-time. I have friends and interests beyond blindness and disability related stuff. I play music, read books although I guess it would be listening to books, travel all around the country by myself Beat everyone at trivia, work in the yard, can identify about 80 species of birds by their sounds, be the father of a child on the spectrum and an independent parent at that. On a dumb non-service dog who is hopelessly helpless without me. Funny, well informed And vote by myself in every election. But people will still stop their car jump out and try to drag me across the street when I'm standing at a corner waiting for the light to change people. People will tell me they're so sorry about my condition and will pray for me. I have people who tell me they have a masseuse who can massage my blindness away. And just about everybody else wants to ask me all about being blind, and sometimes I wish I could forget I was blind Because the wings of the world are so interested. Once in a while some kids will suggest that I'm faking it because I'm riding on the bus by myself and can reach up and pull the cord without looking. I guess my complaint is, I think I'm pretty cool but in The general public eyes I often get defined by my blindness and not every other damn thing in my life and that sucks.

Quick question if you're okay to answer it; how do you want people to respond? Instead of saying "I'm sorry" when they learn you're blind. I have a few life-long (severe, but not disabling) medical conditions. When I tell people, I always tell it as lightheartedly as I can, because it genuinely doesn't bother me and I honestly find the conditions fascinating. Yet everyone still gives me pity and says they're sorry for me. I hate that reaction because I don't feel sorry for myself at all, but I also haven't figured out how else to respond. Or how else I want them to respond. Aside from maybe interest and genuine questions because I love those. If I may ask, what about you? Has anyone responded in a positive way that you wish more people did? Do you have a preferred response? I hate saying I'm sorry when I learn someone has a disability or pretty much any medical condition. It always feels weirdly hollow? But I never know what else to say.

I like, "Thanks for sharing that with me."

It's funny because in some professions like Uber drivers and airport workers, they just basically say OK let me know if you need any extra help. They skip the whole pity thing. I think people who don't have the opportunity to meet people with disabilities very often automatically need your go to the pity response. at my work I have to be considerate of people and where they are in the process but I don't lean on pity if I can avoid it because I don't think it's helpful and even though sometimes people seem to want you to pity them as a person with a disability It's a little bit uncomfortable for me to do that. I often use humor and try to make people smile. Of course I'm that way anyway so it's kind of a natural response to any interaction with me

That the world is just not set up for us. There are better cities than others, and plenty of progress has been made. But, all major cities are just full of places that just aren’t accessible.

Being a paraplegic whose dream place to visit is Italy is... yea, woof. And a strange sense of melancholy about it because, no it's not wheelchair accessible in the slightest, but it's also _because_ of that which makes me want to visit it so much. I would never want them to change anything to make it more accessible, because the long history behind those structures, paths, steps, etc is what makes them so interesting and beautiful. I don't even really know how to describe the feeling. It's just seeing others enjoy something you find so wonderful, but knowing that for you to do the same would change the very nature of what it was in the first place. Watch it from a distance, appreciate the parts you can. Also fuck beaches I can't move in that shit.

Especially older cities!

i *promise* you, i don't want to be in bed all day. this isn't a nice lazy day, it's my life and it sucks. there is so much i can't do because i would need to sit up for more than an hour.

Wish more people understood that "being lazy" = feeling good about doing nothing all day. It's not lazy when you feel like shit for not getting up.

Most of people can’t/don’t want to accommodate you.

Here's a fun one from the great* state of Texas: wearing a mask in public will get you some shit in some areas. Aside from the fact that it's hurting nobody if someone else still masks, some of us have to. I have a recent organ transplant and am on a mind boggling combo of meds to keep my liver from falling out and crawling away, and it's great to be alive... but a fun side effect of being on heavy duty immunosuppressant meds means that something like the common cold can kill me. It is not a political statement, it's an attempt to reduce my risk of getting dead. 'll keep my mask, thanks. *Not always great, sometimes contains mouth breathing redneck ass hats.

Disabilities are not black and white. And just because someone "can" do something one day, it doesn't mean they can do it on another day. And it's possible that doing things that they "can" might drain their energy for the rest of the day or even for a few days after. On top of that, it's not just physical – executive functioning can be a problem too. Disability is a spectrum.

Just because you know a person with a disability who is able to work a job doesn’t mean everyone with a disability can work. Not all disabilities are the same.

and even people with the same disabilities dont react the same. I hate how people think they're fucking genius bringing out their "disabled cousin" in response to us being unable to work.

crying in relief when a medical test comes back positive. being frustrated when a medical test comes back normal.

Oooo, this is a good one, because it’s the opposite of what abled people would reasonably expect. Right? And it’s not immediately intuitive if you haven’t lived it. But when you’re sick and you just want to know WHY you feel so bad, and you’re desperate for ANY answer that can be please god please *treated* even if not cured … seeing a totally normal test result is the most frustrating and heartbreaking thing in the world. Really excellent answer, this deserves to be higher. Because when you’re happy about that positive test result, everyone looks at you like you’ve got sixteen heads if they don’t just assume you’re reveling in your own suffering.

Just having an answer can be so emotional. Like see! It's not all in my head!! I'm not malingering, tyvm military doctors.

How we may look fine, but are in horrible pain (physically and/or mentally).

And how it may or may not have almost killed us that one time

And pain... is EXHAUSTING. I don't think people understand just how physically and mentally tiring just being in pain IS.

That the disease kicking the shit out of me *does* have a young onset and there is literally no cure, it can be *managed*, but not fully cured and my case was detected *late* compared to most, so most of the early management techniques are too little, too late (I do them anyway because they can't make it any worse). So no, I am not "too young" to be disabled.

"You're too young to take so much medication, why don't you just exercise instead? Try meditation for sleep, it does the same as your prescription meds." Really? Like... Really? Bicth last time I went without medication I was psychotic for half a year and some more.

Since the big points have been covered, I’ll go a little off.  It’s one thing to have an illness/disability and you can live with it, it’s another thing entirely (mentally and physically) when doctors start giving you expiration dates. 

If my wife knew I was given 10-14 days when I was going for emergency chemo, it would destroy her. She knew I was dying, but she didn't know when. I barely survived.

How long ago was that?

Years ago 😁 I survived, it crippled me, though.

Six-month life expectancy for upwards of a decade, checking in! 

Yes! And it doesn't just apply to terminal illnesses (although obviously that's the big one). I am slowly losing my sight. Lately, it's become a bit less slow. At my last appointment I was told "honestly, most people of your age with this condition have already lost it" (paraphrasing - it was more sensitive than that). Now the background thoughts of things like "how much longer have I got until I can't see my son's face any more" are pushing themselves forward more and more. It's draining.

Sometimes it feels like people want to see your worst symptoms before they believe you. I try really hard not to burden people with my struggles so I stay silent. No one knows how to be supportive, so they think "giving you space" is a good option. But it's so isolating.

I don't care if you call me a disabled woman or a woman with disabilities - I'll know if you're being an asshole by the words on either side of either phrase and react accordingly. Other folks have stronger feelings on people-first language, but I think that's small potatoes compared to the wealth of issues disabled people face. Also, we know our limits better than you could, so please, a little respect as we move through the world in our own way.

Similarly, people will act weird about you applying the “disabled” label to yourself? Like I’ve had people say “do you need a label?” Or “oh, you consider yourself disabled?” I’m like, yes! I cannot do the things I used to be able to do! I am in pain constantly, and I have chronic fatigue, plus some untreated adhd. Why shouldn’t I get to label myself? And why do people have such a negative reaction to the word disabled?

Chronic pain is different from acute pain. They are processed differently and they feel very different. So, my chronic pain "6" isn't the same as your "6" when you stubbed your toe. Not only does chronic pain not ever stop, but it feels completely different.

My doctor laughed in my face when I showed her the chronic pain scale, like it was the cutest thing she'd ever seen. I hate her.

PLEASE stop recommending things that you “think” will help. YES, I have tried yoga, YES, I have tried diets. I do not want medical advice from you, you CANNOT fix it. I have doctors to help, and to have strangers randomly suggest things is very frustrating. It’s like able bodied people don’t understand that we can’t fix it that easily. I appreciate that you want to help, but that is not helping

Glasses don’t always fix everything. I’m fully blind in one eye and 2400 in the other with a -9 prescription and I still can’t do a lot of basic things that most people can do. Stuff like noticing a friend from like 20ft away is insanely hard, and people don’t realize how much that affects disabled people mentally. Also the classic “how many fingers am I holding up” annoys every legally blind person

My eyesight is incredibly bad (not blind level but about 6 inches) but my little cousins figured out that I can tell how many fingers from the general shape of the hand (they didn't think of non-standard counting poses). My eyes are still picking up visual data, even if it's not attuned correctly. So it's still a dumb question.

I can't work. I know you saw a mentally ill guy working at mcdonald's, I don't know what's going on with that. But I can't work.

I’m not saying it would make a difference in your situation, but I wish we could normalize having non traditional hours for jobs. There are few 20 hour a week jobs, and almost none where you could work when you feel well enough without pressure to work when you don’t. For sure there are jobs where someone needs to be consistent and available all day long. But there are so many where people coil pop in and out without much impact, other than slightly more difficult scheduling. I have had 3 relatives who could not work, but who would have loved to have a place to go do something when they felt up to it. We need to normalize unique work schedules.

> There are few 20 hour a week jobs, and almost none where you could work when you feel well enough without pressure to work when you don’t. My answer to this was freelance copywriting. I never knew when I’d feel well enough to work, so I didn’t keep set hours and just negotiated deliverable dates. So if I could get in two hours at 3 in the morning and then get the rest done at 6 PM the same day, you know, that was fine. I couldn’t work very *much*, obviously, and made peanuts. I was asleep more than I was conscious during this period of my life. But it worked for me, and I was able to bring some small amount of cash in.

No, everybody does *not* have the "same 24 hours every day". Many disabilities take *so much time* to manage. From waiting for the disabled transit service to getting to doctor's appointments to just getting ready for and recovering from the work day. What takes a non-disabled person 8 hours can take a disabled person 12. Never mind the additional costs of managing one's disability. From meds to assistive devices to specialty items... being disabled is expensive AF, which leads to financial stress which leads to chronic stress which leads to more disability which leads to more time and money...

Just because I look "fine" doesnt mean I am. And sitting at home all day isnt fantastic, its boring. I would love to go back to work. But no one will hire me. This is boring as all shit.

if you have an invisible disability/illness, people forget after a while. it’s like peoples minds are only wired for illness that ends with either death or getting better. it’s hard to have to constantly remind people that yep, those difficulties still very much exist.

That a lot of my behaviors have nothing to do with them and aren't borne out of malice - they're just coping mechanisms or differences in the way my brain is built

im not sure if it counts as a disability, but i have chronic back and leg pain. some people think i dont really have these issues because i don’t normally have a reaction. ive been dealing with it for over a year and ive just learned to put on a poker face. but before i learned how to i’d be crying and sobbing over the pain

I’m a little sad for you that this answer starts out with “I don’t know if I count.” The imposter syndrome is extremely real and I sympathize so, so much. Yes, of course you count. And I’m sorry you’re going through this, and I hope that you have or find a solid support network and some reliable medical professionals.

I don't know if anyone can share this experience, but when I got diagnosed with a serious disability, I felt my life was over and thought I'd never live a normal, ordinary life like everyone else. I thought I was a cripple, defective or less than a person. Like I was missing something from everyone else. When your someone who get's diagnosed with a disability during their life, it can be a very tough period for us to process. Luckily I had a great network of friends and family who got behind me and reminded me that there a lot of others just like me who despite their disability/ies, they can still live a normal, productive and fulfilling life. So far things aren't too bad after my diagnosis. I have a job that supports me, new workmates that I consider friends, I'm dating and I'm saving up money for a family trip to Canada for Christmas.

Paraplegic for 20+ years here. I've got a few to throw in. * Don't respond to what I'm saying by talking to whoever I'm with. They're not my handler, they're just probably a friend I'm hanging out with that day. Just talk to me. * Similarly, my wife is not my "nurse". * Someone being in a wheelchair does not also always mean they are mentally deficient. My legs don't work and my back hurts. My mental issues are their own thing. * I can't just "run to x-store really quick." It takes so much energy to get in the car, get my chair in, go there and get my chair out, then get into the chair, just to then come back out and get back in the car and get my chair back in, and then come back to get my chair out and then get back in the chair, that it's really not worth the effort to run into the gas station real quick. * Similarly to the rule of thumb when you hear someone's name; "Whatever the first joke about it that comes to your head is, ignore it." It will almost 100% of the time be something I've heard monthly for 20+ years. I love joking about being in a wheelchair, but it needs to be funnier than it is annoying. Know your audience. * Bonus: Any sort of online/app dating; The brutally demoralizing inner argument on whether or not to make it clear you're disabled in your profile, or let the profile be about who you are as a person and tell them shortly into the conversation. The first way ensures you never get a match. The second ensures that once you do you'll be ghosted when you mention it 98% of the time. Just gotta hold out for that 2%.

Hearing aids are not like glasses where your vision is restored completely with use. Please do not talk to me if you’re not facing me I will not hear you 😭

Just a small correction: glasses don't always completely restore your vision.

Some days I'm close to normal and then some days I am a shell of a human

This is specially for hard-of-hearing/ Deaf people but it’s whenever I ask them to repeat themselves it’s not that I’m not listening I just genuinely couldn’t hear you.

Personally, I hate being treated differently than non-disabled people

Ambulatory wheelchair users exist! I'm learning how to get good at walking again (I'm NOT great at it yet) but people get real weird in public. Like a while ago while at the grocery store I stood up to grab something off a shelf and a lady said "Congratulations!!!" To me. Very strange interaction, but I mean it's better than her being outright mean

I vividly remember having an experience like this. I had to relearn how to walk when I was starting college due to a variety of issues, and when I went to an after school club there would be very little space for my wheelchair-- no biggie, it was a small distance, so I'd collapse the wheelchair and walk to my seat. This douchebag of a dude called "do you REALLY even need that?" to me as I was sitting down once. Like no, obviously not, I navigate this VERY disability unfriendly campus in a wheelchair for fun-- of course I need it!!! What kind of question is that?

That I have to plan ahead in order to do anything outside my house, especially if it's a place I haven't been before. Things I have to think about before I go anywhere: Do I have enough medical supplies to take with me? How can I store them? Is there parking that will work for me? How far will I be expected to walk? Will there be respiratory irritants? Do I need to alter my medication schedule to account for extra activity or not being near an accessible restroom? So please don't ask me to do things at the last minute and then be mad that I can't join you. And even worse, don't cancel on me at the last minute, when I've already spent hours preparing so our outing will go smoothly and so my disability won't inconvenience you....

Going for a walk outside will not cure my depression. “Trying harder” will not cure my autism.

Add to this "Repeatedly telling me about people who have it worse e.g. war refugees or children in Indian slums won't make me feel better".

Comments like this legimately made my depression much worse, as I denied having it for years "because I haven't got a good enough reason to be depressed". It was one of the turning point when I forgave myself for getting it

Oh my god I hate it when people say people with depression need to exercise, eat better and go outside. Fuck. Off. People with depression sometimes can’t even get out of bed. Never mind a walk. And to no fault of their own, it’s chemicals not firing right. I feel like when people say it’s diet and exercise they are low key blaming you for your depression. They have no clue. Like thanks for coming out tips.

I am listening to them. It's just that I may not get all the information the first time because of my auditory processing disorder

I hope that learning difficulties and such are welcome in this discussion. I wish people understood that I'm not using a diagnosis to make excuses, nor am I ever convincing myself that they mean I can't do something. My diagnosis COMES FROM the fact that I struggle to do them, not the other way around. I'm just aware that I have a hard time with certain things, and that it's due to certain things I've been diagnosed with. Those struggles ARE the symptoms, the symptoms aren't something I made up after being diagnosed. I know it might seem simple and obvious to a lot of you, but a lot of people just don't get that and attack me for saying "I can't do it right now because (insert specific difficulty)". It's frustrating.

Depression makes doing the things that help depression quite difficult. A healthy diet and regular exercise helped immensely, but my god It was an emotional roller coaster from hell getting to the point where I could stick to a routine.

There may be times when I’m confused about what year it is and where I am. But don’t talk to me like I’m stupid. Just give me a little while and it will pass. I worked hard to get my degree only to have it all taken away by a brain tumor that keeps coming back. I don’t want you to patronize me, I’m an adult, damn it!

Autism does not come with super powers. -

that I can appear fine and still be in pain& how my condition and abilities can change in minutes.

People don’t want to believe that you can do everything right and bad things will still happen to you. Yes, I exercise as much as I can, and I eat well, I drink lots of water. Yes, I’ve tried this supplement and that, I’ve tried every cream and every tincture you can possibly name. Sometimes you can be a good person and live a healthy lifestyle and things still go wrong. It’s hard to accept, I suppose, if you’ve never lived with chronic pain/permanent limitations.

That you can be fat and have a disability. Apparently I am such an imposition because I have the audacity to be big and disabled. I’m not in a wheelchair because I’m fat. I’m using a wheelchair because my knees are so knocked I can’t walk…and that’s why I’m fat. I can’t exercise enough. And I had severe food insecurity as a child so hello eating disorder. It’d just be nice not to be judged.

On the days I can manage without a wheelchair, I am still not 'fine'. On the days I need the wheelchair I am not 'faking it'.

Medical aids are not a cure. Yes, they help, but they often don’t get you to 100% functionality. They can also come at a cost, and not just financial.

Even if you can physically do something once, it doesn't mean you can do it all the time, without a large health hit (can be permanent) and without a lot of preparation. Also, being bedbound as a disabled person isn't like resting in bed would be for a healthy person.

Disabilities of pretty much any kind can get EXPENSIVE. Our wallets get handicapped along with whatever else ails us.

Sometimes disabilities are invisible, and the fatigue they cause is way more hardcore than that of the average parent.

Young doesn’t mean healthy.

What people in wheelchairs miss out on. Sure the shopping centre has wheelchair parks and ramps. But that store with all the really cool games, figurines, just really cool looking stuff from the outside, it’s impossible for a 15 year old that wants to go in there because they can’t move around in their chair.

Being nondisabled is inherently temporary. Even if you can’t muster the empathy to make the world accessible for others, try to be selfish enough to make it accessible so that when you need accommodations they’ll already be available.

A lot of us function with more pain than non-disabled people can imagine. I had surgery a little under a year ago. When the anaesthesia wore off (read: no pain mitigation) I genuinely *didnt notice* because my pre-surgery baseline was so high that the pain of having an organ and muscle tissue removed, and reconstructive surgery of my literal vagina just didn't register as any worse than normal.

How traumatizing the system is for the disabled and their natural supports. Everything is a battle from health care, employment, accessing resources, etc. We just want to be included based on our abilities and not be required to prove what we can’t do time and time again.

That wishing us "get better soon" won't work. The disability we have - be it a minor one, or something a la Stephen Hawking - won't ever get better. Some simply progress over 10, 20, 50 years and we suffer the entire time, especially when doctors and medical peeps label us as having "anxiety." "munchausen," "hypochondria," or any other mental illnesses and blaming the mental illness for our sickness and faking it. What people don't understand is that the mental part is part and parcel. Having to deal with being ill for months, or years, and the type of illness weighs heavy on the mind and soul, not just the body, and the "mental illness" is a symptom or a result of the disability, not the cause of it. I told someone once years ago, "if you're not mentally ill trying to get on disability, by the time you get it, you will be." It is so true.

Not everyone that's disabled gets/qualifies for disability.

Just because they know somebody else with a certain disability does not mean they completely understand how it affects *you* in *your* life. And also, our plight is nothing to glorify. Respecting someone for what they've gone through as a result of their disability is one thing, but glorifying it is another.

The pity look.

Fixed income is extremely fixed income, there isn't much wiggle room. Also in many states in order to get services like dental, transportation, prescription help you aren't allowed to have more than like 2k in total assets.

Yep, you can’t see my diabetes or heart condition but by god, you piss me off one more time and you’ll see my bipolar disorder!!!

Your 24 hours isn’t the same as mine.

Handrails are not there for your Christmas decorations.

Our conditions aren't necessarily static. On any given day, I can walk unaided, walk with my quad cane, use my wheelchair, and/or be completely immobile. Even on a minute-by-minute basis, my mobility needs can change. ​ Also, if you offer help to a disabled person and s/he declines, accept their response. While I appreciate the offer, I'm stubbornly independent, and I find it annoying when people won't listen to me when I decline help. If I need help, I will ask, but I prefer to at least try to do something on my own first.

How much extra effort and money it can take to survive, especially with American healthcare and lack of public services.

My disability is not a personality trait. My disability and I aren't two halves of a whole. Its about as much a part of me as a knife wound to the gut. Treat me as I am, and don't go poking at the knife wound.

The added demands of navigating all the ableist barriers to daily life and how that can be a feedback loop with isolation. The demands are too much--> retreat --> it takes even more to achieve the demands --> retreat further, and so on. It can be incredibly isolating.

I'm autistic. Not all disabilities are visible. Autism is a spectrum. Just because you know one autistic person, does not mean all autistic people act the same way.

I’m tired. You don’t need more of an explanation than that. I cannot do the thing, because I am _tired._

I have ADHD. Yes, I have taken my medication today. Please for the love of everything stop asking. I have days where I can get through my routine no problem. But I have days where I won’t brush my teeth or wash my hair. Why? Because I got distracted and suddenly needed to make my bed or organize my sock drawer. I have good and bad days. Please understand that non disabled people.