For context I'm disabled from birth. Transformed into an invisible disability.

I have been literally verbally assaulted by freshly diagnosed people who never lived disabled (never had symptoms as kids etc, could go unseen and unbothered) who tried to teach me about how to handle my disability, tried to teach me what was I doing wrong about MY disability, that I was ableist while literally trying to teach me instead of considering my own experience (which literally is around 25 years longer than theirs) is the ableist move. I'm sorry but I can't take it. I use mobility aids, I can barely function. And these people act like I'm new to this. Met around 4 of these people.

I recently passed 1,000 subscribers and I'm planning to upload weekly, at least until the end of this year. I make semi-amateur videos about everything related to wheelchair travel, including hotels, attractions, general travel tips, and sometimes parkrun courses. I know there are already a few channels out there, but I wanted to see if anyone here hasn't discovered my channel yet and would like to subscribe!

URL https://youtube.com/@wheelchairtravelworld?si=UM6S6o1twhn3XVEf

Basically as the title says, am I wrong for wanting to have a disability?

A little context, I struggle with walking a lot from time to time. My feet, knees and hips hurt so much it's hard to bear and sometimes I can't walk because of the pain (my wrists and back hurt to but that's oftentimes way more bearable)

I have talked to a doctor (obviously) and he said I have hypermobile joints and that it can have a lot of different causes including puberty, and I would have to wait until I'm 24-25 Years old until I can either get a diagnosis if the symptoms don't disappear until then.

Now don't get me wrong, if I could pick I would choose to be without pain (again, obviously) but it's there and I kind of wish I could get a diagnosis for something, anything so I can get help.

I have entire weeks were I read up on different mobility aids (mostly platform crutches and wheelchairs) and wish I could have them.

I feel extremely guilty for wanting them because I know I don't need them but I always imagine them taking away the pain (I know that's not how they work.)

But even if I would have them, I'm not allowed to use them. I own a pair of standard forearm crunches (from my mom, who used to need them) and the orthopedist said I shouldn't walk with them or use them.

TL;DR I have pain in most of my joints and I want a diagnosis, but I won't get it for about 6 more years, is it wrong to want a diagnosis for a disability to get help with this problem?

BTW. I'm not asking for medical advice here but on a moral level because I feel like I'm an a-hole for wanting to have a disability, because disabilitys are, well… disabilng and oftentimes connected to a bunch of problems and doctors and all of that fun. (I know that from close family/friends)

What the title says. I'm at a really low point but honestly it feels like my body and brain are just done with living like I'm not disabled. I wasn't doing better before, I could just pretend. I can't pretend anymore. I know what's wrong with me now so I feel the chronic pain a lot more. I just can't function. Can't even sit. And all I want to do is work. I just want to work guys. I'm not even asking to be rich. I just don't wanna fall in the trap of living solely on benefits. But genuinely it feels like that's my only option because I can't sit for 20 minutes without being in excruciating pain. I don't wanna share my diagnoses because it's too real. But honestly I have tried everything and I just feel like I'm going insane. No space is safe. Nothing is safe except bed. Not even bed, I am in pain there too. Living with family is really bad for mental health. But where can I go if I have no money? I hate this I feel like I'm going insane. I can't participate in society in any way.

Okay so, I've been kinda struggling with my stability. Anytime I stand or walk I need to lean against something to make sure i don't end up stumbling or even falling (there are cases where i have fallen). Anything requiring me on my feet takes A LOT of energy which I already lack and im not really sure whats been happening. I want to get a diagnoses or a reason why this been but since i know that's going to take a while, i want to get a cane or some form of walking aid to help. However, i dont want to come off as disrespectful or rude in any way so i just want to come on here to get other peoples opinion before I do, just to make sure im not doing something wrong. I am willing to answer any questions if anyone has, i just wanted to make sure its okay for me to have one or not.

Hallo Ihr lieben, ich weiß nicht mehr weiter deswegen versuche ich es hier.

Mir fehlen so langsam die Kräfte. Und ich schäme mich zutiefst das hier überhaupt machen zu müssen 🥺

Aber wir sind ganz dringend auf ein Barrierefreies Badezimmer angewiesen.

Ich würde mich freuen wenn der eine oder andere sich unsere Geschichte auf GoFundMe anschauen würde.

Vielleicht könnt ihr mich unterstützen und den link teilen?

Jeder kleine Beitrag würde uns unfassbar helfen.

Ich danke euch alle schon einmal von ganzem Herzen

Bei Fragen bitte fragen

https://gofund.me/0166e6794

Hello, this might seem like a silly question but I've had people straight up tell me that I'm not disabled, despite what I have being legally and medically classified as a disability. I have fairly severe epilepsy (around one seizure every three months with medication) and fairly high functioning autism. My seizures aren't "bad," since I have focal seizures, and they aren't really noticeable; but they still impact me and make my life much harder. I understand why people wouldn't classify either of these as disabilities, since they don't actually impact my life all that much, at least in comparison to other disabilities, which is why I was wondering if I actually count as being disabled? Like I said, epilepsy and autism still impact my life severely, and I have many needs that others don't but if I even allude to the fact that these are disabilities people often look at me strange, or even tell me that I'm not disabled for having them. Oftentimes when people minimize the impact that they have on my life and they insinuate that it's my fault for having special needs that others don't; that I could be "normal" if I just tried hard enough. This is epically frustrating coming from people who are disabled, it often feels like, since my disabilities aren't as obvious or as impactful as theirs they don't count and my suffering is invalid. I know that this probably isn't true, but at the same time when you have basically everyone in your life telling you something, it starts to become true... at least in your head.

I’m disabled and have clear delivery notes on my account asking for orders to be brought to my door on the 3rd floor. Lately, with Walmart's new updates, it feels like drivers just don't care. They dropped my entire order right by the gate and ran off without reaching out, completely ignoring accessibility needs just because of a tip.

​Walmart even tells customers we don’t have to tip if we pay for the subscription, but drivers take it out on us by refusing to do their jobs properly. I couldn't carry a 40-pack of water up three flights of stairs myself, and when I tried to ask people nearby for help, no one wanted to. It’s so frustrating that delivery drivers treat accessibility instructions like optional suggestions.

Hello!

My name is Jacob. Last year, my sister Aubrey was diagnosed with Multiple Sclerosis at the age of 26. Her and I are big fans of Love on the Spectrum and we thought “why doesn’t this exist for chronic illnesses?” So we made it exist!

We just completed our film festival circuit where we picked up several awards and today we’ve released the doc to the public. It’s 22 minutes and our ultimate goal is to make more episodes that feature other chronic illnesses.

Please enjoy, please feel free to offer feedback, especially if you are part of a community represented on screen, and please share with someone you feel should watch it.

XOXO

https://www.youtube.com/watch?v=EBdXc0y09eU&t=1s

Honestly how does everyone get about jobs at the moment, i have crohns with an ileostomy, sarcoidosis and crohnic pain, im also on medical cannabis, i put myself out there for jobs but can only limit myself to part time office work.

It seems like there is a massive lack of job opportunities and career progression anyone.

I’m disabled and have clear delivery notes on my account asking for orders to be brought to my door on the 3rd floor. Lately, with Walmart's new updates, it feels like drivers just don't care. They dropped my entire order right by the gate and ran off without reaching out, completely ignoring accessibility needs just because of a tip.

​Walmart even tells customers we don’t have to tip if we pay for the subscription, but drivers take it out on us by refusing to do their jobs properly. I couldn't carry a 40-pack of water up three flights of stairs myself, and when I tried to ask people nearby for help, no one wanted to. It’s so frustrating that delivery drivers treat accessibility instructions like optional suggestions.

why does everyone hate disabled people so much !??? i had to get off tiktok because they just straight up bully people with disabilities who are unable to work it’s so sick.

It’s my dad’s birthday next week! He’s one of my favorite people in the world. He is in his early 70s but has been paralyzed since his 50s with a high level spinal cord injury. He’s now developed Parkinson’s and visual impairment. He’s a gifted writer with significant barriers to writing that my mom and I keep trying to build solutions around. He also loved to play music/still loves to listen to music. I care so much for my father and since I was little, always strived to gift him creative things outside of the classic “dad gifts” (ties, shirts, socks, tools, grilling stuff) which are lovely for many people but, even before his SCI, the man was not super macho 😂.

Some gifts he’s gotten over the years that he’s loved:
- Bird feeder with camera and app
- A stamp of his old signature that he can use to sign cards.
- an Alexa (he didn’t use it - not entirely sure why but we do have general concerns about surveillance)
- a WiFi picture frame so when he is in bed, he has nice images to look at
- Roku with voice control for the TV
- High quality speakers for listening to music
- iPad
- Dragon computer software

Seeking any ideas for creative gifts that other dads with similar disabilities might be stoked to receive! Have you gotten a gift that felt both thoughtful and useful?

Why do so many non-disabled people who work in disability support programs hate disabled people?

I think everyone should have the right to die. Disabled or nondisabled.

People are often against it on the principle that it devalues disabled people lives but that's gaslighting.

Disabled people lives are already devalued. They make health insurance complicated, they isolate us and restrict our access to individualized Healthcare.

There is nothing left to do but die. Some disabled people have great lives and they should have the right to everything they desire.

But for those of us with no support system, we should have a choice.

If you have been disabled for a long time or are chronically online like I am, you've probably heard of the maid program(medical assistance in death ). Obviously this is still very new type of thing. And I don't even live anywhere close to where it's being enacted. I live in the Southeast United States. However, as I get older, I'm 21 now, I start to see the reasoning behind it more and more.​ I have spinal muscular atrophy type 2 and Between being in constant pain, low self-esteem and complete social/ romantic isolation, it starts to feel like you are already dead so why not just make it official. I've already tried to end my life three times and as I get older and I lose more strength it starts becoming less and less of a possibility which is a good thing I guess. Having something like the maid program would give me an opportunity to have a legal and less traumatic experience for my family and give me the autonomy over my body and what I want to do with my life. I see a lot of negative thoughts about this program which are completely valid, but has anyone else given it a thought on whether maybe it's a good idea or not?

I have a super pubic catheter that’s mostly healed but it continuously smells bad and I was wondering if anyone had any advice on how to stop that or manage it I’ve already talk to my doctors and there’s nothing really wrong with it, It just smells

Three months ago, I hit my head and got a TBI. Life has been pretty rough ever since. I can’t drive, I use a cane (temporarily I think), and I have appointments on what is nearly a weekly basis.

To top it off, I have ongoing psych issues due to the nature of my injury. They leave me disoriented and unable to function safely when they are at their worst. 75% of the time I’m fine, just needing the cane for mobility issues. But the 25% is the trickiest part.

I don’t have a good handle on my triggers, which is why driving is out of the question. (I could have an episode during driving that leaves me not knowing who or where I am.)

My wife has mentioned a couple of times that she wants me to return to work. I also want to return but I don’t have the feeling of being ready.

Has anyone been through something similar, particularly with psych issues? What sort of jobs were the best for you?

I am 22f with my fiancé 24f. We’ve been together 3 years now. She came into the relationship knowing I had chronic conditions, but it wasn’t until January of this year that I became too ill to work. I now rely on a foldable electric wheelchair 80% of the time due to fatigue and have daily seizures. I recently because legally disabled and have qualified for an in home paid caregiver. I need to decide if I want my fiance to become my pain caregiver or request for an outside carer to take on the role. My PT is evaluating me to see if I need a full powerchair.

Some factors:
My fiancé is disabled (back surgery/ongoing chronic pain) and is unable to do a full unassisted transfer. I rarely need a full transfer. Maybe have needed it once or twice in the past 9 months. She can do assisted transfers where I have some capacity to help.
I have concerns about caregiver burn out affecting our relationship in a negative way. Especially with us both being young.
We live in a studio apartment and my fiance currently works nights. Having in home care would wake her up.
I am nervous of receiving care in my home from a stranger as my needs are slightly complex/abnormal (ie my seizure protocol is not the typical protocol due to their frequency, states of confusion etc.).

Some of my needs:
Most hygiene other than toileting
Meal prep
Seizure protocol
Mobility support (fall risk)
Dressing
Set up for hobbies
Driving
Safety supports and supervision (states of confusion and post ictal states)

I am super conflicted on what would be best. My fiance has assured me she could be my caregiver as long as it was her job and not in addition to her job. She says it would not cause burnout or resentment. She caregives for me anyways right now and we have gotten on just fine. The only times I feel a lack of support is when she hurts her back at work and it triggers a high pain day for her. But she may be getting surgery in the next year or two due to her back issues. As much as I want her and am more comfortable with her, I worry about the longevity.

What has your experience been when choosing in home care? Is it easy to change carers if needed? Do you recommend using family if it’s available?

Happy to add additional info if requested or answer questions for clarifications

UPDATE: Talked with my fiancé and she and I both agree an outside paid caregiver is the best way to go :). Thanks everyone!!

Can someone with a one-sided disability still build up the weaker side?

Hey everyone, I'm 16 and I've recently started going to the gym. I have a disability that mainly affects my right hand/forearm, and my right side is noticeably weaker than my left.

Some of the problems I have when training are:

• My right forearm has limited outward rotation. I can rotate it inward normally, but I can only rotate it outward to around 45 degrees.
• Because of this, biceps exercises are especially difficult/awkward for me since I can't rotate my forearm into the same position as my left.
• When I try to push with my right hand, my wrist tends to go into outward flexion instead of staying in a stronger position. I can move my wrist up and down, although not very well, so I'm wondering if training my wrist could help me make it more resistant/stable when pushing.
• My right hand isn't as stable when holding dumbbells, so sometimes the dumbbell feels awkward and my hand/wrist gets held in a weird position. I actually find the barbell easier because my hand is kind of forced to hold it in a somewhat stable position.
• My right side is weaker overall, so with unilateral exercises I sometimes reach my limit much sooner on the right even when the left could keep going.
• Some cable weights are awkward because one setting can be too light while the next one is too heavy for my right side to get the full range of motion.
• So it's mostly my forearm that has the problem but gernerally it affects the rest of my work out, I found work arounds, mostly to most of the exercises. except the biceps. I do the 45 degree ish curl but I don't think that's good enough.

I'm still very new to lifting, but I really want to build muscle and eventually have a bigger, more balanced upper body.

Right now I'm trying to train both sides fairly. For unilateral exercises, if my right side can only do 8 clean reps while my left can do 10, I'd rather have both sides do 8 instead of letting my left side keep getting more work.

My biggest worry is that I'll keep training and my left arm/shoulder will grow normally while my right side stays significantly smaller, making the imbalance even more noticeable.

For anyone with a similar one-sided disability, nerve injury, limb difference, etc.:

• Were you able to build noticeable muscle on your weaker/affected side?
• Did the difference between your sides become smaller with training?
• How did you train the weaker side?
• Did you find certain exercises worked much better than others?
• Were there movements you had to completely modify or avoid?
• Did you have any similar problems with wrist positioning, grip, or forearm rotation?
• If you've been lifting for a while, what did your progress look like over the first 6–12 months?

I'm not expecting perfect symmetry. I mainly want to know whether it's realistic for my weaker side to become visibly muscular too.

I'd especially appreciate hearing from people who actually have a one-sided condition themselves, rather than just general gym advice.

Thanks!

For context: my boyfriend has mixed connective tissue disease that causes a lot of pain and does not have a cure, which I’ve known since before we started dating, which was a couple months ago. I have chronic pain in my pelvis and lower back that I am actively healing and it’s able to go away in time with physical therapy and chiropractic care. My boyfriend recently got prescribed crutches to relieve a lot of his pain due to the progression of the disease. I’m so happy that he went along and got them because he was initially afraid of how other people would think of it, but I encouraged him to think of how much it would help him instead of what other people would think, since it’s no one’s business.
The thing that’s bothering me: I know he’s struggling more than I am with getting used to the crutches, but I’ve kind of had to adjust my daily habits because of the fact that he sometimes needs extra help with holding things. Obviously, it wasn’t like this before when he didn’t have crutches. I’m gonna help him as much as I can since I love and care about him a lot. But I have found that there have been some moments where he will ask me to do something while I’m doing something, in the middle of a conversation with someone else, or it’s something he asks for that would cause pelvic and lower back pain for myself. I’ll tell him to give me a second, and he’s fine with waiting, but I haven’t not done something if it causes myself pain because I usually suck it up to begin with, and also don’t wanna disappoint him. I know my life will be a bit different than another person’s life who doesn’t have a partner with physical limitations, but there are moments where I feel like I’m expected to help him and I feel like I’m giving up my own time or physical energy. Another part of it is the fact that he just recently asked to slow things down in regards to activity level. Which I can do, but I’m typically one to be a very outdoorsy person with camping, kayaking, short hikes, and a bunch of adventures. I sometimes feel like a bad person for thinking I’m tied down or don’t wanna help every time, especially since it’s not all the time, and I usually only need to carry something small for him, which I’m completely fine with doing. My intrusive thoughts and anxiety are telling me that I’m being ableist because of some of my thoughts. Some of it is thinking “why can’t he do it himself?” or “why is this on me?” when I know he physically can’t without pain and it’s stupid to think that. I know I would never intentionally act on any of my thoughts as I know they’re wrong and they’re typically intrusive. I guess a big part of this is feeling like I’m losing a bit of my independence. I’m mainly just nervous to communicate all this with him because I know how his brain works with potentially thinking that all this means I don’t want to help him and am gonna break up with him over it. Which is far from the truth, I wanna marry this man, spend the rest of my life with him, and help him in every and any way possible. I want a healthy and happy relationship and life for the both of us. I just personally have a hard time communicating and sometimes talk in a way that he sometimes misinterprets.
Any advice on what to do, not to do, or say to him?

I will forever hate the medical industry for how many times they essentially groomed my family into mutilating and altering my body to make things " easier" because I was born disabled that shit pisses me off, and I fucking hate it, and I hate the fact that I basically have no bodily on me solely because I was born disabled and was looked at as something that needed to be fixed from my limbs to my genitals, it always seems some part of my body needed to be altered or just straight or up destroyed for the convenience of others or some thinly veiled excuse that it would make things easier for me when in reality it's made nothing easier some of it makes things even harder.
Not to mention that surgeries to fix a disability that didn't need to be fixed in the first place didn't work so there was ultimately pointless I just fucking hate the medical industry so much for everything it's done to me that can't be reversed.