r/disabled

For the past few months I’ve had lower back pain to the point I can’t move or hardly walk. I’ve seen the drs and they keep sending me to more drs and I can’t afford it anymore. If I walk or stand for more than 30 mins my back locks up and I cand move at all without dropping from the pain. My legs have also been incredibly weak since this all happened. I feel like I’m doing something wrong if I get a wheelchair without it being recommended to me but i can’t go out anymore I have to send my boyfriend everywhere. I guess I’m just looking for reassurance that I won’t be crucified if someone finds out I’m in a wheelchair or using a cane without it being prescribed.

I have lived in the UK for around 9 years and I feel like I'm experiencing some kind of strange burnout from all the anti disabled sentiment here.

My partner works but I don't, and I have always felt so anxious when people ask what I do for a living.

There is no good answer and I can immediately see their demeanour changing when I say I don't work.

I'm the worst kind of immigrant. The kind no one wants here. People automatically assume I claim benefits as well when I never have.

The worst part is that I have hated living here the whole time. My partner is British and I moved here to get away from family abuse, just before Brexit was finalised. We decided to stay because it just seemed like the safest, most sensible option at the time. My partner only speaks English and getting a work visa in the EU now would have been borderline impossible for her...and my country isn't that LGBTQ friendly ( we are a same sex couple).

But all throughout these 9 years we have been living in a social housing property that is truly hell on earth. Mould, leaks, horrific neighbours, weed and cigarette smell...all have made everyday life a misery.

I've developed MCAS and even pet allergies as a result of this and now I have to re-home the dog that I had even before moving here.

I have young onset osteoarthritis and now the pain relief that had helped me all these years isn't safe for me anymore due to MCAS. I'm 34 years old and waiting to die. I just feel so angry. And so stupid.

Before moving here, I knew the UK was LGBTQ friendly which was a big plus. I somehow thought that they would also be disabled friendly and I thought medicine would be more advanced here as well. But now every treatment that could help me isn't funded by the NHS and is absolutely, impossibly expensive.

We can't sue our housing association so we could get some help with the costs of these treatments either, since on paper, they have done nothing wrong.

Im not sure where this post is going. I suppose I was wondering how all of you UK based chronically ill/disabled people cope with it all.

I'm convinced that poor housing conditions actually heavily contribute to the high disability rates in the UK. But no one seems to actually acknowledge this, instead able bodied people insist that many of us are fakers and claim benefits fraudulently etc (and assume that every disabled person is on benefits).

I came across an old comment of mine in which I mentioned a program I found while looking to adopt a dog that would not allow people with disabilities to adopt. (Some people even agreed with the program's rules).

I used the saying that they would not let me adopt "special needs" dogs (i.e., meaning ones with disabilities like sight-impaired and ones with severe separation anxiety disorder that would need accommodations, such as needing to be with a person all the time). Everyone has their own soft spots on Reddit, but was it insensitive to call the group of dogs special needs dogs?

Edit: Thanks for the responses.

The happy story ending is that my best friend helped me get a pup that matched what I needed as a companion (cuddly, lapdog, silly at times, friendly to people and other pets), and my friend helps cover some of his medical costs.

Edit WARNING: i get really impassioned and rant a lot in this post. My apologies if i upset anyone. I am not trying to target anyone just express my frustrations with how my own desire for a cure is treated by both sighted and Disabled members of my own community.

I want to be Cured and i find it really annoying other disabled people don't. I am 21 (Male) and suffer from retinitis Pigmentosa. Yes. Suffer From. Not deal with. Not have. Not even struggle with. Suffer. From. It wants to Take from me. Some of my best times are reading, (which i lost around 13-14 and had to go with audio books) Playing video games and Watching Movies with my friends. I, for one, WANT TO BE CURED. Cure me. If there was anyway to cure me i'd take it in an instant. Im a pure Transhumanist. The human body sucks, hates you, Reject and fight against the Fading of the Light. And i get really really angry with how 'At Peace' everyone else in my community can be. They tell me to accept it or even that its not a bad thing. That im just 'different'. When im LOSING SOMETHING. Its being STOLEN from me by my Disease. I want. It gone. Im never having kids. Ever. I would never curse someone to live as i have Lived in a constant state of Fear and Terror as my Vision and favorite activities are Stripped from me. Dragged away. And everyone just acts like this makes me wiser. Or its just a quirk. Or god forbid a Superpower. Oh god i hate the Superpower metaphors. As if having superstrength is at all equatable to having something be STOLEN from you by genetics that just Hate you. I want to be cured. I want this gone. I want to see my nephew when hes an adult. I want to smile and play catch. I want to read small print. I want to watch Darker movies. Or navigate a theater without my cane. I hate this acceptance everyone in my community has of their disability. As of this Isnt a bad thing. It is. This is a Bad thing. Taking from you experiences. The world doesnt need to change if i can be Fixed. I dont want to fit in with normal people. I dont care about them. I want to be cured for my own reasons in order to Survive and keep doing the things i love. I want to be cured and im sick of pretending this is enlightening or Good or reflective or just different. Its BAD. Im losing something. Ive lost things i loved. Im sick of pretending that somehow disability is good to have or positive. Its not. Whats happening to me is a Bad thing. Its not a superpower. Its not a feel good moment. This is bad for me. Im born at a disadvantage. Id like to be on even footing. Id love robot eyes. Or an inhuman body. Their is nothing sacred about my disability. God didnt give.me a tough fight. Or want to use me as an example. This. Just. SUCKS. and im tired of pretending for the sake of others that it doesnt suck. That im okay with it. Sighted people and even fellow blind people Demand i just be okay with it. That i see it as a Good or unique quirk or interesting thing. No. Its a BAD THING. That i would vastly prefer Gone. Nature cursed me and my genetice hate me and i exist in Spite of those challenges. Im winning in spite of those things. I would love those issues to be gone. But their not. I lost my vision enough that by 13 i couldnt read a new book id bought in my favorite series. I remember it clearly. It was the latest read and it was so hard and i just couldnt do it. I remember at the age of 7 and 8. That i couldnt play dodgeball and just had to suffer trying anyway and being taken out immediatly or just give up and cry outside. I remember at 10 when i saw the Stars at my grandmas house. I remember by 12 when i couldnt anymore. I remember how at 17 i couldnt see the dark scenes in my first horror movie and it was just really boring and all my friends talked after about how scary it was and i realized descriptive audio was mandatory now. None of those things were Fun. Enlightening. Superheroic. They. Just. Sucked. And im sick of the romanticism around disability and how some Groups of disabled people fight against cures id kill for.

Another thing: physical disabilities and Mental disabilities are Factually extremely different and we need to stop lumping them in together. I dont want to cure Autism or anything. Thats not the same. It will never be the same. Physical disabilities and mental disabilities are very different. One is arguably just an entirely different set of tools in life. Where everyone else has power tools they have screwdrivers or Paint brushes or so on In physical disability: You are missing some of the Standard tools. Their gone. Anyway. Thats my complaint against the Disabled community. I. Want. A. Cure. I hope thats okay to want.

I’m going back into my deep depression because I’ve lost my ability to move a lot and for the past few weeks out of nowhere I’ve been in so much pain and it’s gotten to the point I’m spending most of my day either in bed struggling to move or doing nothing but laying on the floor, I’ve had enough going back and forth with the GPs and hospital visits apparently everything is normal despite over the past year and a half I’ve been more and more dependent on mobility aids, I’ve had to quit my job because it was becoming impossible for me to and now I’m on disability benefits and because I’m autistic aswell I struggle with looking after myself already. I’m 20 and I feel like such a failure and a disappointment my parents say I’m being lazy but I’m in constant pain and lose energy so fast I fall asleep during the day, oh and not to mention pain meds don’t even help or work. I’ve had enough I wanna throw in the towel I give up

Hi, r/disabled!

I’m Helen!

I was born profoundly deaf and I use sign language to communicate. I’m also passionate about all things disabled.

I only just found out about this subreddit. I’m curious what’s the difference between this subreddit and r/disability?

https://blogs.cuit.columbia.edu/rightsviews/2019/01/27/sterilization-of-people-with-disabilities-acknowledging-the-past-and-present-history-rhetoric-and-effects-of-a-harmful-practice/

https://theconversation.com/forced-sterilization-policies-in-the-us-targeted-minorities-and-those-with-disabilities-and-lasted-into-the-21st-century-143144

https://disabilityphilanthropy.org/resource/eugenics-and-disability/

I thought it would be good to add some articles for reference because I know not everyone is familiar with what went down. I keep seeing people say that there should be rules about who can reproduce, usually targeting the poor and mentally ill. Y’all, we already tried that and it was horrific.

Somehow everyone is surprised when you bring up what happened in America, I wish it was more common knowledge that disabled people genuinely did not have reproductive rights and it’s still an issue. Our bodily autonomy and agency is often forgotten.

Legs amputated above the knee

Have a big big big heart

I just tried to post on r/disability but apparently I don’t have enough karma so I’m trying here instead

I’m 18, turning 19 in 2 days, and I have yet to get my license. It’s not like I just don’t want to or I have “anxiety” around driving, it’s that I’m genuinely terrified I would be unsafe behind the wheel.

I have a few diagnosed conditions, and a whole lot of other issues that haven’t been diagnosed or examined by a doctor. I’m diagnosed with POTS, but my main concern is suspected narcolepsy (that cars are usually a trigger for, I tend to fall asleep like 75% of the time when I’m in a car), seizure-like episodes that are accompanied by loss of muscle control after (and sometimes at random), and dissociative amnesia (forgetting where I am, where I’m going, what I’m doing, and how to do something I’ve done dozens of times before, as well as just spacing out in the middle of activities).

I’m not looking for any armchair diagnosis, I just don’t know what the next steps I should take are. My family has been wanting me to get my license all year (i didn’t get my permit or license at 15-17 because I was barred because of how much I pass out, but syncope isn’t my main concern now because I can usually feel that coming, the other stuff I can’t most of the time). I’d like to be independent and be able to go where I want when I want instead of having to burden my family for a ride every time I want to go somewhere and not be stuck in my house 5-7 days a week anymore, but safety is my main priority. I don’t want to go get my license then end of hurting myself, or worse, hurting someone else in a car accident that could’ve been avoided.

Any advice would be appreciated. I’ve been thinking I need to talk to my PCP first and foremost but I don’t currently have one so it would be a completely new doctor and I’m so worried about not being taken seriously since I’m not diagnosed with anything that would prevent me from driving. I guess I’m mainly looking for advice on what to say to a doctor that would get them to look into it, or provide a referral to someone who can. Thank you in advance!

P.S. I’ve done a lot of research on what my symptoms could be but I know doctors tend to hate when you think you know what’s wrong with you, so i didn’t specify, and I’ll probably try not to name any specific conditions to a doctor so they don’t immediately write me off

I have multiple chronic conditions. The main one, Cystinosis, has resulted in my having to now (this is a new development) use AAC. I'm on SSI.

I used to go to bars, single mixers...but I don't think it's conducive to an AAC user. What do I even do now to meet people? I'm in a bunch of local Bumble BFF group but most of the events take place in a bar or club. Never mind flirting...

What do I even do? I only have one friend in this city and I'm mostly a homebody now and I'm trying to find way to meet people online but I can only use an iPhone. No computer. So the only thing I can really do is Discord and Sky: Children of the Light.

I'm so lonely. I can't even diamond paint anymore because of my shoulder (muscle wasting) and that was one of my favorite pastimes.

I just realized that I have been avoiding accepting how disabled I really am and have been for over 10+ years. It's severe and I have no help. I was brought up to ignore pain and illness and push through, but when you can't push through anymore. People like realtors and loan officers don't take you seriously when you are on SSDI no matter how intelligent or how many years you've owned a home, have high assets, 3 degrees, perfect credit, how successful you were being self-employed. I "look" perfectly healthy to many, but I am really jacked up and cannot even sit upright, am mostly too unwell to simply get to any doctors appts and try to do all virtual anything. I was used to "masking" due to narcissistic upbringing. I can't decide whether to try to continue keeping up appearances (well, I have lowered my standards clearly and now only get hair cut maybe once/year, and wash only once a week) to try to make new friends or to try to find disabled friends. I've even jacked up so many things (one legal) in the past few years due to uncontrolled pain level and not being able to care or be accurate. I've been renewing my LLC with the hopes of being able to work since 2022..................................when I have severe trouble doing online stuff and even holding a cell phone due to the weight of it. I stopped going to salon 10 years ago when I used to go every 2.5 weeks on the dot to hide my natural hair color. I have severe spinal stenosis and dysfunction in pretty much every organ, was a health and fitness addict for 25 years. Probably overdid it. I mean you can see that I am in chronic pain just by looking at my eyes. Main goal of each day is to bathe/get dressed, but I only put on clean pajamas and went without even a winter robe, have trouble shopping for basic necessities even online.

i’m in a flare and things like looking through the clothes on the floor to find my wallet, putting dishes in the dishwasher, anything with bending or standing - is triggering more symptoms than usual. more pain and more symptoms. i’m hoping this is just a summer flare but i’m worried i won’t be able to live independently if it isn’t. i use a power wheelchair out of the house but not inside and i live with my parents when not at school right now. what do you guys do for this? I don’t think a grabber tool will help but I might try one, even though my grip strength is quite poor. Any other ideas?

Hi there! Apologies if this isn’t appropriate.

I have a recollection of a page from my geometry textbook from high school (2002-ish) where one of the thought exercises showcased a an ice cube tray where each “cube” had a semicircle curve. In other words, each cube was basically shaped like a short cylinder cut in half into a semicircle.

The prompt in the text book was “can you think of why this shape of ice cube tray would be easier to use for someone who only has one arm?

In my head at the time I thought “well I guess because of the shape you can press on one side of the semicircle to pop the ice cube out instead of needing to twist the tray which requires 2 hands”

I guess my question is a) are these types of trays actually around? Have you seen them or tried them? My keyword searches aren’t turning up anything that looks similar, and b) now that so many more ice tray products are available ie silicone material etc, maybe they’re not necessary? I guess c) would be that they were never that practical of a design in the first place.

Just curious!

So I work at a movie theater and we have some seats that on the screen where you pick seats are labeled with the disability sign, these seats are empty spaces for a wheelchair user to be in their chair. Some wheelchair users prefer to transfer to our chairs while others prefer to stay in their wheelchair and I need to know which one in order to pick the correct seat for them. What I usually do right now is just ask the wheelchair user "are you planning to stay in your wheelchair or transfer to one of our seats?" Or if they seem to be leaving the talking to a person accompanying them I will ask that person "are they planning to stay in their wheelchair or transfer to one of our seats?" But I have seen online that a lot of wheelchair users feel dismissed when someone asks the person who is accompanying them instead of asking them directly but I am not sure what to do if the wheelchair user is halfway across the lobby leaving seat choosing to the person with them and I figure the best solution is asking the person with them rather than yelling across the lobby. Just want to make sure I don't make anyone uncomfortable or feel dismissed or anything like that, all advice is welcome.

I’m angry. I keep seeing things about people complaining about the bump things on sidewalks used by blind/low vision people to let them know they are going into the road. They say things like “they are so ugly” or “why are they even here?” And I just get so upset. Have we lost the art of researching things when we don’t understand them??? Instead of posting online about how ‘ugly’ or ‘pointless’ you think they are maybe take that time you used to post that video and instead use that to research what it is!!! People are so used to ignoring disabled people that they would rather think something is ugly and has no purpose than to think it might help someone else who isn’t like them.

I spent my day as a wheelchair user trying to find a pair of formal trousers that are loose fitting and not tight around the crotch. I was hoping that I would be able to scour the high street in search for something.

Unfortunatley I did not.

Sitting in the trousers I have already with immense discomfort. Every shop I went to, from M&S to Matalan to NEXT had nothing that I needed. The gentleman at M&S did his best to assist me and we had both come to a conclusion that I would have to look online instead. We both came to the conclusion that shops just don't stock these sorts of clothing in physical stores because they are pushing for tighter clothing that everyone else seems to be wearing.

I much prefer to purchase these things in person so that I can at least see what I am getting and try them on before I buy them to ensure that they do fit so that I do not need to deal with returns.

After all that it hit me that the fashion industry is just not accessible to disabled people. And what does exist in the way of acceisble clothing is hugley expensive. It would be great if there was more affordable, accesible clothing for disabled people.

I have found something online and I am just hoping it is what I am looking for and that I do not have to deal with the returns processes. Wish me luck.

Feel free to comment your experiences.

So I’ve had back issues for eight years now. Nothing ever showed up on any scans or any testing done by specialists. Everyone told me I was making it up and sent me home. As of the last four years, it has gotten exponentially worse. I now need a key in the wheelchair. My pain gets so bad that paralyzes me. I have seizures. I finally got the diagnosis of functional neurological disorder yesterday. I’m happy to have answers but at the same time the last few days I’ve been really upset. I took things for granted when I was able to walk normally. Yes I was an athletics, but there are other things I didn’t do that I wanted. Now I’m angry. I’m angry that I can’t do what I see others doing online, I’m angry that I can’t do things that I’ve always wanted to try, I’m angry that I can’t just get up and walk normally, I’m angry that i need help with simple tasks. I am so angry and frustrated and overwhelmed with all of it. It’s to the point that I can’t even be fully excited and happy about finally getting a diagnosis. Is this normal? Is it normal to think this way?

Just recently had a training for work that said most people find “disabled” offensive or derogatory, but I’ve always been “offended” (or I guess irritated) by the “person with a disability” description. lol, just wanted to hear from everyone, what do you prefer? Do you care? Lmk

As a high-level dyslexic with ADHD, reading long guidebooks, and such, to figure out how I can get my numbers up is insane. I can get about 2 lines in before I am out. I have been on this platform for over 7 years, and my numbers are still so low because I just get frustrated and stop using it for sometimes years at a time. Does anyone else have this issue?

I don’t know how to word this, but does anyone wish certain conditions were recognized as a disability? Like for example I was born a micro preemie which disables me, it affected my growth and overall development, I always get mistaken for a child and get treated like one even tho I’m supposed to be a older teen, I wish lots of things were considered disabilities so people can get the help they need without judgement, not trying to sound rude here