My therapist told me to apply for disability

[u/Longjumping_Buy_9026]

i struggle with nervous system burnout. basically every symptom you would think comes from something deadly, but it’s actually my nervous system going “HEY, we’re on high alert. we’re traumatized”. tremors, extreme fatigue, memory loss, brain fog, dizziness, racing heart, POTS, joint pain, muscle weakness, IBS, TMJ. I know there is a side of reddit prone to telling people they are faking it, but that side of reddit is unfamiliar with the neuroscience of chronic illness. if you’re one of them, just be grateful you have a brain and nervous system that knows how to alchemize sensory input and stress appropriately. seriously.

I’ve had a really hard time working this year. the job market sucks and I keep having to quit because my job is putting me on bed rest.

October was the worst month of my adult life. I had head-to-toe pain so severe, I started thinking about Jesus and the meaning of death. I struggled with basic tasks. I basically gave up.

I fear the future. I can’t work enough to achieve my goals. I’m currently on my dad’s insurance for another year and a half. I live with my mom but we’re losing the house in the divorce and I know she wants to live with her new boyfriend, not with my ass.

so my therapist said disability could help me get on my feet, live independently, which might actually increase my recovery. less childhood trauma coming up, and more control over my environment.

but
1. I don’t want to take those resources from someone who needs them
and
2. the system seems too difficult to navigate. I have to cap off my income from my part time job, they might say I make too much at 20/hrs a week
and
3. I’m afraid it will keep me stuck. stuck in a label, stuck dependent on the government, stuck in poverty

[u/swiftangel13]

Best of luck. It’s the worst humiliation ritual I’ve ever been apart of. Come with all your medical documentation

[u/dazzleunexpired → u/swiftangel13]

I was recently denied myself.

You know why this is INSANE?

I AM ON LIFE SUPPORT. Let me just fucking work while on the goddamn ventilator. 🫪 No. I'm not kidding. At all.

[u/swiftangel13 → u/dazzleunexpired]

Oh, wow. I am sorry sorry. That’s so wrong. I would say the system is broken but it works just as intended. Built on cruelty. There is no shame about asking for help to survive a disability. The govt exists to provide for people by the people and it’s just been so twisted esp in the US

[u/dazzleunexpired → u/swiftangel13]

I legitimately think that denials are actually automated at this point and that a human being does not look until you appeal unless you apply with a Blue book condition.

My condition should be Blue book, in general. Muscular dystrophies are considered a Blue book, but my exact condition is so rare that it's not listed in the Blue book 🙃🙃🙃🙃

We are now going to argue with the compassionate allowance team to approve me through compassion program, it's the program that's used to accept someone automatically that should be accepted automatically (like in my case where muscular dystrophies are always disabling but some are too rare to be listed).

Legally I should qualify because I can't do ADLs, I use a feeding tube and a ventilator and a cough machine and I have a central line etc, but the government makes it disproportionately difficult. Just really really difficult because they would prefer that disabled people don't survive as we all know. Getting disability isn't easy for any class of person except for a person already in an institution or group home, but those people don't usually get to keep their social security. It usually is given to the group home for their keep.

It puts you into central nervous system disarray for sure. We may try to get you to argue for why you deserve to survive. " Please explain why we should care about the fact that you cannot breathe? Are you beneficial to us in any way? Is your family beneficial to us in any way? Are you sure you don't have enough money to need help? Because you can't have more than $2,000! You don't need help if you have more than $2,000! Never mind that that's only one month of life!"

[u/cherrylimebongwatr → u/swiftangel13]

I think people in this comment section misunderstand what SSDI actually is. It’s money taken from our pay checks that turn into work credits which determine how much your monthly award is. For example, I’m at the last stage in the process but had maxed out my work credits by the age of 30 and based on how much I’ve paid into it, my award will be $3500 a month if I’m approved. That’s money I EARNED working 70 hour work weeks for almost a decade, no one will make me feel bad about taking it back.

[u/Pr1nc3ssButtercup → u/cherrylimebongwatr]

THIS!

[u/swiftangel13 → u/cherrylimebongwatr]

YES that’s right 👏

[u/MyCozySlowLife → u/dazzleunexpired]

The system is so fuking broken! I'm so sorry. I hope you have a good lawyer! Mine was great and made everything so easy and smooth for me, he got me approved very quickly after my denial.

[u/dazzleunexpired → u/MyCozySlowLife]

So the fun thing is that one of the things that my disability makes very difficult for me is organizing contacting other people, keeping emails together, remembering dates remembering to fucking finish the paperwork... I have neurological conditions that cause my brain fog to be just so fucking bad. I literally have the paperwork next to me that needs to be posted to my government portal and have not finished the last few things on it that I need to do to post it. Hopefully my husband and I are going to finish that today. It's just really stressful 🫪 And when I get stressed I have seizures and vomit and when I vomit I am at risk of aspirating which puts me at major risk of needing to go back to the ICU I got out like I don't know almost 2 months ago at this point from the ICU and I don't want to go back yet lmao

I need to reach back out to A disability advocate to help probably but ahhhHHH why can't it be like Europe?

[u/EngineIntelligent394 → u/dazzleunexpired]

They automatically deny 99.99% of applications multiple times until a lawyer is needed. 

[u/dainty_ape → u/swiftangel13]

Same, I had an awful experience with it - drained my health further having to jump through all their hoops, and ultimately was denied after 4 years of going through all the layers of the process.

Then again, since I was out of work and had no insurance, I wasn’t able to see specialists or therapists to explore every possible angle. I had the recommendations of two primary care doctors, and a physical therapist’s physical capacity testing data. That wasn’t enough though apparently.

I think a lot of it also does just come down to luck with who your case ends up in front of. The appeals judge who got mine only approves 30% of their cases, which to me seems super disingenuous 🤷🏼‍♀️

[u/ConsistentHunt1804 → u/swiftangel13]

Now I’m nervous. I’m on board with our girl too