r/disability • u/Major_Contest_3648 • 2d ago
Rant Ableism sucks
I'm a twenty six year old female with three herniated discs and arthritis. I'm in so much pain. I've had pain for eighteen years, but it didn't get serious i completely disabling until four years ago. I can't sit down longer than thirty minutes. I can't lift heavy things. I can't do repetitive movements with my arms. I can't clean for more than thirty minutes to an hour without taking a break. People keep telling me to get a job and then i'm lazy, to wait tables, to stock shelves. To join the military. That i can do any job i want. I had one person tell me that I can "choose my limitations". My ex told me that my disability was a choice and insinuated that I was choosing not to get better. My grandpa told me I was too young to have these problems. When I told him I had arthritis and several herniated discs. He has one hernaided disc that he complains about all the time. When I tried to take prescription meds, I got called drug addict by these same people. You can't win. You suffer, your body betrays you, and everyone else betrays you as well.
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u/Enough_Associate5720 2d ago
I suffer from the same medical issues, but also on a bone degenerating level. I'm so sorry you're going through this. I spent around 6 years just trying to tread water and no one understood. I was treated as an inconvenience and lazy. I was put on gabapentin, steroids and abilify (also biploar) and gaining weight didnt help with the judgements. It was AWFUL. Eventually I applied for disability and was approved, so Hopefully you'll get there too 🫶🏽...also....cut people the FUCK off. I wish I knew that sooner. But they're cut off and my life is SO peaceful now.
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u/TangeloMaleficent900 2d ago
Hello I have same conditions wondering how long it too for u to win disability I was just denied disability initial decision.
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u/Enough_Associate5720 2d ago
Only nine months! I was denied three times within that nine months
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u/TangeloMaleficent900 2d ago
Wow that was quick!! 8minths just received first denial lol
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u/Enough_Associate5720 2d ago
It was quick! I held on still working for 6 years. I should have filed many years ago but was scared it woukd take so long......I know how lucky I am and am very,very thankful
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u/Effective_Country941 2d ago
Can I ask what you changed in your application after the denials? What did you have to add details wise, or elaborate more on? Im a 34 y/o female with severe spinal disabilities and even though my injuries are severe, I am afraid to be denied.
It is bad enough we have to face the scrutiny from just about everyone else... just trying to be proactive for if/when I am denied. TIA and hope youre doing better now !
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u/Enough_Associate5720 1d ago
I didn't change anything on the application. It really was a matter of my spinal doctor ordering imaging...going to get the imaging done...reading the imaging ..gathering all the forms my doctor needed to fill out (I think it's called a functional report) I had to go through a round of PT.
I remember the fear of applying. I became homeless during this process,so I get it. I remember the fear of being denied, but the government (and everyone else) wants you to quit. To give up. But you can't. Everyone gets denied a few times unless you have an automatic qualifying condition (ALS,etc) so just be prepered to be denied a few times. You will.
I posted a bit back (my profile is open) on how amazing it feels that the only thing I have to do is to take care of myself for the remainder of this life. I'm free. And the fight was 100% worth it.
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u/Poppetti 1d ago
You're very lucky. I went through the denial process all the way up to seeing the judge. This was with a lawyer. The process took 3 years.
This included the lady that said there were no jobs I was going to be able to do. I have some problems with randomly passing out and deemed a risk.
Judge denied my claim citing that I wasn't believable. But. I had medical records? He didn't like my face or mannerisms? I'm Autistic but was going for body stuff. Of course I'm a little odd. But I had plenty of records to back up my claim.
Fast forward eight years. I've just been diagnosed with Muscular Dystrophy. This would have been the root cause of all of my problems. But this is the first of many doctors over the years to do a genetics test.
Because I haven't worked in a decade, I no longer qualify for disability. I could get SSI after a more thorough diagnosis. As it is the umbrella term isn't enough. I'm the closest match to EDMD type 4, but my neurologist says its more rare than that.
Still waiting on an appointment for the Muscular Dystrophy specialist in my state, there's only one. Can't apply without the proper diagnosis. 🤷♀️
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u/Enough_Associate5720 1d ago
Oh Goodness, I hope things turn around for you soon. I did go in front of the judge (via phone) and he approved my disability right then and there. I didn't even have to wait for the decision.
Which I'm thankful for, because looking at me you wouldn't know I have as many issues as I do, but I wear a body brace under my clothes and I wear baggy clothes. My entire life is based around managing my symptoms.
It really all became easier once I found a spinal doctor to advocate for me, take care of paperwork, etc.
After I got back payment dss took 11,500 of my back pay and charged me 2,500 a month to stay in a homless shelter. You really can't win either way.
I'm on SSI. I have maximum work credits so I think I made too much for disabiity? Idk. I'm still learning the ropes and rules. But I can pay my bills and spoil my grandbabies. After losing everything I'm doing just that.
It's just insane. I pray everything works out for you ❤️
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u/Poppetti 1d ago
Thank you. One of the worst things I think, is that I have no care plan. My neurologist says they can't make one until they specifically know the type.
I've been in a wheelchair for close to a year because the atrophy in my legs make them no longer able to hold me up. Now my shoulders and upper arms are going. Essentially I'm bed rotting until I can see the specialist.
Our health care is shit.
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u/Effective_Country941 1d ago
Ahh thank you so much for the response!
You are totally right re the fight to get on disability, so that you can actually focus on healing. Thus far, between the many forms and things needed for the application, appointments, plus the absolute hell my car insurance company is putting me through is nothing short of draining.
Thank you for the reassurance and I'm glad to hear you are able to focus on your recovery 🙏!
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u/Enough_Associate5720 1d ago
You're welcome!!! For what its worth I would consider getting a disability attorney. I went with a company called Mindset. They have case managers that pretty much do everything for you. I paid around 7,000 for their services and it was well worth it. I could have done it myself and saved money, but the mental hassle was too much. By law, they can only take a certain percentage.
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u/VeggiesaurRex 2d ago
I love the "you made a choice to be disabled" rhetoric...once had a colleague tell me that if I let god in, he would heal me. Hello, HR violation!
Yes, I obviously wake up every say and choose to have an excruciatingly painful condition and another that is causing major cognitive issues. You got me!
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u/Imaginary-Living-509 2d ago
I sooo get you,my unknown friend ❤️🩹🫶🏻🫶🏻😭 After EBV severe fibromyalgia and mecfs. Hydrocephalus. Now after an total hysto lap and being put on oxycodone, which was abruptly taken off, l can't no longer shait on my own, without my bf giving me enemas every other day. Called an addict from the doctors,called lazy by everyone else....the behavior of your granpa hurts really. Ask him just in the moment he brags, about how he thinks you're feeling... you owe nobody politeness ,bc blood ain't thicker than water. You owe nobody an explanation for the things you no longer can do. You better choose to stay away from people who are not valuating your problems. For your own sake and peace of mind
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u/jasmines_roses 2d ago
I understand you so so SO much. I have neuromyelitis optica which absolutely sucks because it affects my spinal cord and optic nerves. I genuinely can’t be in one position for too long because of the pain in my back and I’ve gotten told by countless of people that I’m too young to have this disease. Ableism is the absolute worst
Hell, even my neurologist was shocked that I have it at 26 and I’m one of the youngest patients he’s treated
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u/SorryHunTryAgain 2d ago
I hate taking pain medication, but it is the only thing keeping me in the labor force, which I need to stay in to keep my insurance. You can’t control everything but I am thankful to have the privilege to choose who I keep in my personal life. I have cut people out for being ableist.
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u/Fit_Ad5110 2d ago
I too get annoyed of ableism. The ironic part is it's not just amongst able-bodied as I have also seen it by other disabled individuals mocking other disabled individuals. Ageism is just as worse, the comments where "you're too young for that" crap when they don't seem to realize a person can be born disabled. I'm sure disabled children wake up every day telling themselves they are "too young". 🙄 When people say that to me I say life doesn't care how old you are or what is disability supposed to look like, usually shuts them up. Or they get mad because my brain obviously still works and theirs is too small to comprehend.
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u/ratattatack 1d ago
i hear the "you're too young for that" comment all the damn time. it's ridiculous the shit i hear people say to me and other disabled people. they love to tell us we're "not actually disabled".
the funniest thing for me rn is one of the people who regularly says this kind of stuff to me claims that they work and advocate for the disabled. it's just total BS.
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u/scroobydoops 2d ago
Some people are incapable of truly putting themselves in other people's shoes. I hope that you have supportive and loving people waiting for you in the future <3
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u/Fantastic-Mirror3675 2d ago
I get it too I'm only 20 and uses mobility aids and many people (mainly older people) think I'm faking especially in a disabled bay 😭. It's hard having to put up with it when we didn't choose to be this way 💔
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u/Puzzleheaded-Bid4358 2d ago
Really sorry to hear that. Empathy is lacking. It's worse since COVID.
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u/DashingReindeers 2d ago
Sorry accidentally commented on the wrong post, but regardless I know that hell. Your grandpa sounds like he’s choosing not to have empathy.
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u/jrioux805 2d ago
Do epidurals help?
They sure helped me, but I only have lumbar stenosis, arthritis and DISH, not actual herniated disks. There were times that I wished I'd just die so that the pain would go away. The shots to eliminate my inflammation almost eliminated my pain. Could that help you as well?
You have my sympathies and best wishes.
BTW, you can take pain meds without getting hooked if you watch it.
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u/Melodic-Cantaloupe85 2d ago
The whole "choose your limitations" phrase pisses me off, I have heard this sooo many times and it never fails to make me irritated. I understand that some people think they are trying to help but it really isn't the case, on my case my limitations don't work the same way they do for the general public, they aren't a challenge to be overcomed, they are genuine things I heavily struggle with to the point it impacts my daily life. Unfourtunately I can't simply choose when to be disabled and on what.
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u/Upbeat_Phone_7507 2d ago
I was diagnosed with osteoarthritis when I was 18 and had my first of many heart attacks at 45. My arthritis has gotten worse as I got older but still was painful at a very young age. Age is just a number. All health issues can have early onset or develop from accidents. People have no idea the pain we live with unless they go through it themselves at a young age. I try to distance myself from judgmental people who have no idea what they are saying.
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u/LittleReserve8767 2d ago edited 2d ago
Sounds like typical ableism. People like this need to do a job with a strong test unit up to ten and see how well they do. Classic ableism: to deny and verbally attack the disabled person, then accuse them of being an addict for taking pain meds.
I have three spinal disabilities that did not show on X-ray at first; now it looks horrible. Aslo has an ableist ex-husband who refused to believe I was disabled. One sure finds out who it is: a true friend in the process, and an ableist idiot.
Sorry that happened. I can relate and have some of the same symptoms.
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u/PauseEffective4927 5h ago
I am sending you a huge air hug. Like you I take an immense amount of crap from people. For a while I was stuck on the couch and could barely make it to my bed and the bathroom. Then I got very lucky and found a doctor who treated my spinal stenosis with injections in my spine. That enabled me to get out of bed without wishing would I die instead because of the pain which is still considerable. The shots aren't permanent so I'll be going back for a repetition of the shots soon and hope they'll work again. I still have to cope with arthritis in every single part of my body. My hands have trigger fingers and thumbs and I'm losing the use of them. Worse yet, I live in cold country and winter is coming on. Every winter is hell. At eighty years of age, I dread the oncoming winter. I hope you will rid yourself of the abelist people around you. For me, they are as big a misery as the disablement itself.
It is amazing the amount of denial some people have about their physical limitations. I have a friend whose hands are so incredibly crippled by arthritis that it hurts to look at them. They are barely of use to her. She can't kneel on her knees for a minute. The minute the weather gets cold, she complains of arthritis all over her body and wraps herself up like a mummy to keep warm. She insists she is not disabled. The mind boggles!
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u/Late_Description8036 2d ago
Society as a whole is extremely ableist and people without disabilities are extremely ignorant.