r/disabled

I tried posting this in a disability sub but they removed it so I'm sorry if this isn't the spot either

I'm 19f for context, I've been sick since the beginning and whats been labeled likely HEDS definitely hypermobility since I was 6, it's been progressing as time goes on and I gather more rough experiences.

But a year and a half ago I was working enough to completely support myself and save up to move out of my insane mother's house, I worked a physical job and I did it well enough to get in such good favor with my boss that he's still participating in my life, then a year ago I couldn't walk more than two miles and now I can't stand long enough to do the dishes, or shower, Im in medical limbo of trying to figure out why everything is what it is while everything is just finally seeming to stagnate some after careening violently downhill.

I've also moved around a lot, a lots happened but now I'm in a house, I'm safe, and I think I need to stop just hoping this is something that'll be over soon and I need to start accommodating myself. My PT and doctors agree.

I've been using a cane for a while but it's ruining my shoulder so I'm getting crutches as soon as I have the money, and if I happen upon a rollator I should get one too.

I'm getting a shower chair so I stop having falls and such random little things I can think of but I'm really so disoriented I'm sure I'm missing some obvious ways I could try and make it easier to care for myself.

Sooner or later I'll get a stool tall enough for my kitchen so I can try cooking or dishes that way but there's also things like my hands dislocate and hurt so bad and my neuro issues make it increasingly difficult to hold onto items and make my limbs do what I want so I run into things like dropping the curling iron on my lap because I was trying to sit while doing my hair for an appointment and burning myself and sometimes I'm not able to make my body respond to the danger properly like a hot curling iron or when I'm cooking so I get too anxious to do anything even remotely dangerous which is basically everything.

Yes I have my partner who takes care of me and will happily do all the things I need him to but I still need to function while he's at work and not have us both worried I'm going to fall or hurt myself and not be able to get help yk

Idk if any of that was super coherent so I'm sorry

How many are more hermits of their disability, or is it just me? Is it fear of judgment and scaring the public or something else, or do you get out and don't care what others think?

My mother hates that I'm a hermit and wants me to get out and make friends and socialize with everyone in the family the same way, but when I try to get out of my shell, I either get scared and run away, or they throw the r-word a million times, or they'll either laugh or whip out their phones and start recording. It's so annoying. 😐 It's even worse when riding in the passenger seat with others. Idk if anyone else has this issue with CP or some genetic disorders like me, but drivers would slow down and be out of whack more than usual compared to how my mom would drive by herself.

I don’t feel comfortable being out and about for more than an hour without my backpack, which has all my medical supplies/supports. I was turned away from a bar because of my bag last weekend and just now lost my bag because I was trying to carry it under my wheelchair to hide it/make it not look like a backpack at an event where the security guards at bag check yelled “if your bag has 2 straps like a backpack, you have to throw it away or leave!” I don’t know how I’m supposed to exist and take care of myself in an environment like that. I can try to tell security that it’s a medical supply bag, but sometimes when I’ve explained that I needed my water bottle for medical reasons (which I do! And I carry a doctor’s note to prove this to anyone willing to listen to me in a scenario like this) security or bouncers or whoever did not care and did not let me in with it. Maaaybe it would be different without the water bottle, but I might still have to get to the front of the line to find out, and then it’s up to the individual security guard and whether they’re in a good mood or will even let me talk to them to say “It’s my medical supplies.” Also not all my stuff looks clearly medical.

One of the important things I carry in my bag is my as-needed and evening medications in a prescription bottle, so security probably would understand that. But I also have:

*ice packs, a hand-held fan, a large water bottle, and electrolyte packets for my POTS with heat intolerance (I get that the water bottle can be a sticking point, but I’m willing to dump it out. That is not the issue here.)
*snacks because I have food sensitivities and often cannot eat the food for sale at events
*face masks, hand sanitizer, and wipes (an infection could make my chronic conditions worse, and tbh I also have contamination anxiety)
*earplugs
*pads, which I need to carry every day because I experience very unpredictable uterine bleeding due to medical issues
*sometimes a battery-powered wearable heating pad if I’m having pain that day
*tissues because my nose is always dripping
*sometimes a collapsible stool if I’m not using my wheelchair that day and anticipate that there won’t be places to sit

I don’t feel comfortable going to festivals etc. without these items, and I would need some of them still at a club or a bar. Some places have coat check, but others don’t and will straight up just send you home if you have a bag (especially a backpack, I guess maybe I could get a zippered tote bag if it would really make a difference? But I’m not confident it would).

What do I do??

Has anyone had success buying a bag that’s explicitly, visibly a medical supply bag for stuff like this or for their diabetes or pain relief supplies or whatever? Anyone have any other ideas?

I wanted to ask something that’s been on my mind.
Does anyone else feel like people with disabilities need a stronger voice when it comes to discrimination in employment, government programs, and Vocational Rehabilitation?

Too often, decisions are made by people who don’t seem to understand what many of us deal with every day. The public rarely hears about the barriers we face, and many success statistics don’t always reflect what individuals actually experience.

I sometimes wonder if the disability community should organize peaceful demonstrations or marches to demand better treatment, accountability, and equal opportunities. Instead of only hearing reports from government agencies, I want to hear directly from people with disabilities about their real experiences.

For example, my own experience has been incredibly frustrating. I’m deaf/hard of hearing and spent nearly three years trying to get approved for Social Security Disability. I was denied three times, including after doctors wrote reports that I believe did not accurately reflect my disability. During that time, I became homeless and had very little support.

I’ve also been working with Vocational Rehabilitation for about three years. During that time, I haven’t received a single job interview through the program. I’ve experienced months-long communication delays, changing requirements, and counselors adding requests that I later learned weren’t actually required. It often felt like my time wasn’t valued, and the lack of accountability has been discouraging.

I’m sharing my story because I want to know if others have experienced similar issues not just with VR, but with discrimination, job hunting, or disability benefits in general.

What has your experience been? Have these systems helped you, or have they made things more difficult?

My partner is autistic, trans, has POTS & I suspect has dyspraxia. I have a physical disability causing all over joint pain & mobility problems plus ADHD & PTSD. My partner bought a 4.5" pair of heels to wear to Pride. With the heels, she's just shy of 6'8". She was upset and angry when I said I didn't think they were a good idea to wear, because she's wobbly anyway and not used to heels and that if she falls into me I could break my leg (I have trauma from a previous leg break). She said I was carastrophising. This is even though she's fainted twice in the recent heat. We have had a huge argument about it and things aren't resolved, and she still thinks I'm catastrophising. The other issue is in heat and crowds, especially when standing for any length of time, I often need her support, and that will be much harder if she's wobbly herself and well over a foot taller than me.

Am I catastrophising?

Im level 2. I have a great relationship, a career and masters-level education, but I find myself unable to build social connections. Part of this is definitely due to being an introvert, but other part is definitely due to me having CP. I just find socialising stressful, I feel like i can't keep upp with others. Im bad at stairs and can't do escalators due to balance issues. I always feel awkward asking people to slow down or wait, makes me feel like a burden that is slowing everyone else down. When I was younger I had friends when my mobility was better, this was ok fun but I would always crash out later due to the tiredness. Im also quite anxious about going to new places as not everywhere is accessible for me and i may get stuck in places that are considered normal. In my youth many invites stopped coming after i fell down in public or was denied service due to ignorant bar staff thinking I'm drunk while sober.

I feel like lot of my life i used all my energy to fit in with others, adapting my personality or hiding my disability. Then i decided this is no way to live so i stopped. Now I'm alone.

I've tried disabled groups but didnt feel this was my jam. Disability is such a wide spectrum and I found that I need other shared interests apart from the disability. Im also into mental things such as reading, politics and philosophy amongst others. Many of these groups included everyone which is great but for example the book group books and discussions were at the level that people with learning disabilities can also contribute, which means that we wouldnt touch on any too complex topics. I know this is ableist of me but I'm someone who has rightly or wrongly coped by trying to compensate my slightly broken brain with academics.

I have a nice life and im quite happy in my own bubble and i may stay here forever. However sometimes I wonder if I'm missing out from something great in life.

I wonder if experience like mine is common in our community?

Hi there, mods please delete if not allowed.
So I’m an able bodied man who has recently started dating a man with arthrogryposis. We haven’t discussed it much but he is a double amputee with limited function in his hands, but says that his genitalia still works. We discussed sex and he wants me to take his virginity, but I have done research and can find nothing on best positions for his safety and comfort. I don’t want to bombard him with questions and overwhelm him about this, and while I know that each individual has a different experience, I was wondering if anyone had any advice on how to proceed with this?

I don’t post much, but after reading through a lot of these posts, I wanted to share my own experience. This isn’t meant to invalidate anyone else’s struggles. Every disability is different, every person’s circumstances are different, and I know not everyone has the same opportunities or support. This is simply my story.

I have a cereal palsy. I use a wheelchair, but I don’t have an intellectual disability.
When I was a kid, people often assumed otherwise. My parents had to fight for me to be placed in regular classes instead of special education simply because of my physical disability. Throughout middle school, I had someone assigned to follow me from class to class because staff believed I needed constant supervision, even though I didn’t. Those experiences affected me more than I realized at the time. They sent the message that I was different, that I needed to be watched, and that people expected less from me.

As I got older, I ran into more of those assumptions. I applied for around 100 jobs and only got a handful of interviews. I honestly don’t know whether my disability played a role in not getting hired, and I can’t say that it did. But after a while, it’s hard not to wonder. I’ve also struggled with dating and relationships. It often feels like people make up their minds about me before they ever get to know me. Whether that’s because of misconceptions about disability or something else, it still hurts.
I won’t pretend life is easy. I struggle too. There are days when I get frustrated, discouraged, or wonder why things have to be harder than they are.
At the same time, I’ve learned something important: other people’s expectations don’t have to become my own.

Instead of letting those experiences define me, I started looking for things I could build myself. I created an online game server that ended up making a few thousand dollars. More recently, I started a vending machine business, and now I have machines at multiple locations. I’m not wildly successful, and I’m still working toward my goals, but I’m proud that I built something despite being told directly and indirectly that I probably couldn’t.
I also want to acknowledge that I’ve had family support along the way, and I know not everyone has that. I know there are people facing challenges that are much harder than mine, and I’m not trying to compare struggles or say that hard work solves every problem.

What I do want to say is this: don’t let society decide what you’re capable of. People will underestimate you. They may assume you can’t do something before you’ve even had the chance to try. That says more about their expectations than it does about your potential.

Your disability may make some things harder. But it doesn’t automatically mean you can’t build something meaningful, create opportunities for yourself, or live a fulfilling life.

If you’re reading this and feeling like the world has already decided who you are, don’t let that become the voice in your own head. Keep proving people wrong most importantly, prove it to yourself.

I'm Josh, 22 and lost my arms recently. I've been through a lot of rehabilitation and occupational therapy so I hadn't had a chance to meet or chat to any girls to see what the game is like now. Is there anything I should be aware of, any heads up or things that I might not have considered myself. This process of dating makes me really anxious now especially as a guy, I feel like I should be the strong and chivalrous one.

I (16M) am the only sibling of a heavily disabled older brother. I know what my parents expect of me currently. To take care of him when he's gone. But I don't want to lose my life for him taking care of him. Is there an alternative. PS- please dont take any offence on this i still love him dearly.

I’m asking for my bf of 5 years. He cannot hold a job. It’s bad. He also has severe OCD (picking)
He can’t be in time for a job and has no concept of time. I want to help him help us.

I'm new to this group and have seen the word abelist used a lot. I googled it and saw what that told me. Is it that it means people without disabilities go out of their way to be jerks? Or could it be construed as They-don't-have-a-clue-ism? Or both? I just don't know. Any insights are appreciated. thanks!

Hi everyone! I've been through a few interviews for a new (remote) role, and it's very possible I could be receiving an offer. I'm curious about everyone's opinion on how to disclose that I have a disability and will need flexibility for my doctor's appointments, any potential hospital stays or surgeries, etc. With every application, I check the "I currently or have had a disability," but I'm not sure if the hiring manager actually sees that.

I know a lot of people say to never disclose anything until after you sign the paperwork, but it's important to me to know I will have the flexibility and compassion before I do that. I will be able to get any ADA accommodation form filled out, but again, it's also about the compassion from a potential manager and company.

I really have it made at my current job when it comes to this, but I am looking to leave for other reasons (including a nearly 45% pay increase, which would be life-changing). So because I am supported at my current job, I can be choosy as I look for my next.

If it matters, I've had two emergency hospital stays in just one year, a half-dozen ER visits, and two scheduled surgeries within the past year and a half. I have many specialists and, while most of my appointments are scheduled months out, there are times where if one has an open availability or something comes up, I also need that flexibility to do that, take time off, lie down during bad days, etc. I work in marketing, something I can easily do from home (and have for the past 7 years). This all sounds worse than it is. I'm not at the point of applying for disability (plus I make way more now than I would on disability, plus the healthcare benefits are typically better via private employers). Just wanted to put all of that out there.

I appreciate the advice!

​

He recently developed a neurological disorder of some kind. He went from being one of the fastest, wittiest, most fun people I know, to being barely coherent. He can only speak in a few words at a time now. If I ask him basic questions, he rarely knows the answer. Even stuff like, "Did you see that?" referring to a movie we are watching and he just stares at me. If I'm lucky I get a "no" or a "what?". The point of this post is that he can barely walk now. He falls over all the time and everyone is worried. He chooses to walk without a cane (very wobbly) most of the time. I try to get him to use it and he gets mad. Its his pride. I don't know what to do. He keeps falling down....

There seems to be questions about disABILITY. Perhaps this is a misunderstanding. For me being differently able to do things is better. I use small letters for dis; meaning not and capitalize ABILITY because I have abilities to do many things regardless of how people perceive me. Seeing the positives, not ignoring someone who dis not able as in handicapped, or crippled, or lame, or disfigured, or what ever label is or isn't appropriate to me is not positive. Minimizing "dis" and Maximizing the ABILITY seems more positive. It's ok if whoever does not agree. I'm all for discussing and finding understanding. So far though, my use of disABILITY has been accepted as positive rather than some convoluted underhanded title for porn or other unsavory stuff. As for AI, I use it for correcting spelling, punctuation sometimes, but I do not use it to write ideas because if I did and put my name to it claiming I wort this content I would be a lier, a cheat, and this is not my style or intent. AI is for me a tool and nothing else. My thoughts are not something I want AI to create for me. I have a brain I want to use, not be lazy and allow a machine to do my work for me. For me AI is a double edged sward. I mean no offense. Whatever is comfortable for one person may not be so for another person. Yes, I am legally blind, legally deaf, and use a wheelchair. Thank you for sharing your thoughts.

I am 28 and chronicly ill. In the last 2 years ive been really struggling with pain and energy levels. It seems to be getting worse over time.

When I go to the store it takes me couple days to recover.

I bought a cane about a year ago and its been helping a bit but still struggling.

I started struggling more and more with pain and energy. 

I ended up buying a cheap manual wheelchair, which will be here tomorrow.  (Im planing on getting a electric lightweight one in the future when I can afford it cause i know manual wheelchair be hard on my body)  

I know if I go out with it people i know will definitely going to annoy me about it

And if my friends mom finds out, she would definitely get up in my business like she does with my eating and medical stuff. (She seemed annoyed and confused at one point why i had fmla, when she knows im disabled)

I also have a friend that constantly bugs me saying I shouldn't be this tired and walking is good for me when I was struggling to walk around the store.

Knowing me ill end up putting it in my closet and not use it even when needed cause I am so embarrassed, ashamed, exposed and awkward.  And feel like im not disabled enough for one.  Plus its not like I can use it at work cause its a physical labor job. I am barely aloud to have my cane with me. (Planing to get new job but its hard to find something accommodating)

I have seen so many clips and stories of people harassing young disabled people.  Im not even 30 yet and needing medical devices. I am worried about encountering people like that. I also dont drive due to other disability, so I dont have disabled parking badge so I get to avoid that for now at least. 

I dont know how to deal with feeling like a burden. I will be talking to my therapist about it in out next session in 2 weeks. 

Kinda ranting, kinda wanting advice.

Thanks

Also Happy Disability Pride Month

I'm Jason a 37 yo male, I am disabled. I have 7 conditions causing me pain for various reasons so moving and literally just existing causes me pain. Now I have dated before I even have an 11 year old daughter but since I have been diagnosed and gotten significantly worse I have not dated because I don't view myself as someone that anyone would want. I can't drive because of the pain meds and can't work so I never thought anyone would date me. So, I'm curious would anyone date someone in this condition or even show interest once they find out?

Hey everyone! I'm u/Musical73band, a founding moderator of r/disABILITY_possible.

This is our new home for all things related to dysABILITY, finding equipment, service animals, environmental challenges-accessibility, finding groups related to disABILITY, just about anything challenging or fun, or what might be on your mind-not always disABILITY stuff. We're excited to have you join us!

What to Post
Post anything that you think the community would find interesting, helpful, or inspiring. Feel free to share your thoughts, photos, or questions about what to do when, how to find something, help needed, I'm struggling/challenged because, a good thing happened, this is fun, all kinds of stuff is welcome so we can enjoy life.

Community Vibe
We're all about being friendly, constructive, and inclusive. Let's build a space where everyone feels comfortable sharing and connecting. A family gathering of people who have something to say is awesome!

How to Get Started

1. Introduce yourself in the comments below.
2. Post something today! Even a simple question can spark a great conversation.
3. If you know someone who would love this community, invite them to join.
4. Interested in helping out? We're always looking for new moderators, so feel free to reach out to me to apply.
5. Say/write something funny, or share a challenge that was resolved by doing whatever worked.
6. What is your favorite hobby or passion?
7. If there were no restraints what do you hope for? What can assist you in reaching this goal?

Thanks for being part of the very first wave. Together, let's make r/disABILITY_possible amazing.

I (24M) have been with my partner (26F) for 5 years now, and we are going through the toughest rough patch our relationship has ever had.

First, let me give some context. We met when I was 17 and she was 19, and started dating when I was 19 and she was 21. I knew early on that she had chronic illness- she has a condition that gives her severe chronic pain and mobility issues to the point where there are times she struggles to get out of bed. There are times where I have had to wash her body/hair for her in the shower, help her up and down the stairs, make food for her, and many other basic care tasks. I did these things because I loved her, and I still do.

She has been there for me through my highest highs and lowest lows. I have been hospitalized due to SI 3 times, and each time she was there to visit me every single day. She cooks for me when I am too overwhelmed to do so myself, she helps me study, she helps me stay organized. She holds me when I cry. I will fully admit that she does a lot of emotional heavy lifting for me, which I have always tried to express my gratitude for.

Because of her disability, she is unable to work. It’s not that she can’t do anything for herself ever- it’s that her bad pain days are not predictable, and she would often have to call off work with little or no notice. Which, as you can imagine, employers are not exactly jazzed about. We have been trying to get her on disability/social security for years now. She has been denied twice. The third attempt is still pending, and has been for months.

For this reason, I have been the sole breadwinner of our little family (we have 2 cats and 2 dogs) since we moved in together- about 4 years ago. I pay for rent, groceries, medical bills, hobbies, etc. She has no income, and to my knowledge, has not attempted to find any kind of work in years. Granted, the kind of job she would need (remote and choose your own hours) are extremely difficult to come by. But I digress.

During the school year, I work full time as a CNA and am a part time student. I also suffer from major depression. Because of this, I am gone often, and am usually exhausted by the time I get home. However, I still help her with whatever care tasks she needs, because I do not want to see her go without.

Something we have argued and cried about for years now is that I am not spending enough quality time with her, and that her needs are not being met. She says she doesn’t feel like she is a priority to me. This is very hurtful, as from my perspective, I am doing the best I can to take care of her, and in response I am being told that I am not doing enough. I have literally been hospitalized due to overworking myself. I am so tired every single day. I want to be there for her, I do. These days, every interaction seems to end in an argument. I feel like a terrible partner for not taking her out on dates and planning activities more often. I just am so exhausted every day that it is a deep and profound struggle for me. I am so burnt out, in every aspect of my life. I’m tired of fighting all the time. I don’t want to leave her- she’s my best friend. But I don’t know how to take care of myself while also taking care of her.

I know this is kind of a novel. Thank you for taking the time to read this.