Disclaimer

Every journey towards getting disability income in the US looks different. This is just my experience and your experience may be vastly different. I am sharing this to help you feel more prepared for your own journey by giving you a glimpse into my own journey.

My journey to applying for Social Security Disability Income (SSDI) started in January of 2021. I was scheduled to get the Covid-19 vaccine but hadn’t received it yet. Working near the capitol of Utah (a very red state) with a first generation middle eastern immigrant child on January 6 and the days surrounding it had me on edge. I started getting arm tremors that I chalked up to stress and assumed would go away over the weekend as I got a chance to relax. 

Instead, my weekend started with a sleepless night as my neck and body started shaking and didn’t stop. I went to urgent care to get help and got a referral to a neurologist and a muscle relaxer. The muscle relaxer made me drowsy so I could finally sleep. But it turned into sleeping too much and the shaking didn’t stop.  I tried to go back to work on Monday and only made it through half the day by the skin of my teeth.  I got short term disability from my work and tried to focus on getting better and getting into my neurologist appointment.

In February, I met with the neurologist who  did a tremor entrainment test before diagnosing me with Functional Neurological Disorder (FND). I got off the muscle relaxer and onto a new medication. This medication triggered seizures and was quickly stopped, but I kept having seizures. 

I researched my condition to look for anything to help. I was having multiple seizures each day and searching for anything to reduce the frequency.

When my short term disability ran out, I applied for SSDI. It became clear that while I was getting better, it was going to be a long recovery journey if I ever fully recovered.

My First Denial

The first denial came after I filled out more paperwork about my symptoms and struggles. At that point, I had figured out I wanted to keep my writing business. My reasoning is that I could work to hit deadlines while working with my disability. My deadlines don’t tend to care if I write half an article, nap for four hours, and write the other half.

With that, I tried to fill out Plan to Achieve Self Support (PASS) documents to try to help my case. I had no idea what I was doing and just hoped it would help my case as I was still trying to be productive and contributing to society.

My Second Denial

When my second denial came, I started researching ways to increase the odds of getting my application approved. I looked for YouTube videos, blog posts, and even consulted with friends who had worked with SSDI before. I compiled medical records, made sure all my providers were able to provide information to my case, and wrote an appeal.

During the waiting period on the decision of the second appeal, I started looking for lawyers. I had been advised by a few friends who had SSDI that a lawyer can help format your documents in a way the agency prefers and even ask for things that you wouldn’t have thought of. I called several lawyers and started running into an issue with wanting to keep a business I had established a few years prior that wasn’t turning a profit yet. Most of the lawyers I talked to ended the conversation when the business came up even though it was operating within the SSDI limitations. I finally found a lawyer through Utah Disability Law. I personally recommend trying them if you are in Utah. The lawyer was willing to take on my case and I started filling out paperwork. My lawyer also warned me that because I was under the age of 55, I would likely be denied again.

My Third Denial

When my third denial happened, I was not surprised. I was in the process of filling out the paperwork with my lawyer and we started preparing for the trial. 

I put together more paperwork and worked on running a blog that I’ve since discontinued. It was during that time I wrote the blog post about building a business while applying to disability. I consolodated a lot of materials, kept working on my therapies, and waited for the trial.

I watched YouTube videos on how the trial would go and just tried to be as ready as I could be. Due to Covid restrictions, I had a virtual hearing scheduled. It may have allowed for me to get a faster timeline on my SSDI. About a week before my trial, I got incredibly nervous about the trial. I had finished preparing everything I could, the deadline to submit evidence had passed, and all I could do was worry about how it would go.

As a result, I immersed myself in Disney Dreamlight Valley. I was either sleeping or playing that game and my sleep at the time was abyssmal.

The Trial

My trial took place early in the morning in the middle of December 2022. I went to my lawyer’s office for the video call that would have a trial. On the call was the judge deciding on my case and a vocational specialist.

My nerves and lack of sleep increased my spasms to a point my lawyer was able to point to them happening. He presented all the evidience, included my need for naps after working for a few hours that tended to go on for a few hours and showed some other evidence I hardly remember at the time.

When we got to the end of the trial, the judge asked the vocational specialist some hypotheticals about jobs someone similar to me can do. Usually the hypotheticals zero in on your symptoms and start really broad. Most people will get through a few before they hit the answer, “There are no jobs”. I got that response on the very first hypothetical. I was in shock.

The judge then proceeded to talk about what the trial had found and included a bit about how some people are only temporarily on SSDI and how he hoped that might be the case for me. My lawyer and I talked about how it went and set up a follow up after the results should come through.

The Best Christmas Gift Ever

On December 24, 2022, I got a letter from the Social Security Administration (SSA) that I had a fully favorable decision. Before that the details were murky about exactly what the win might mean. When I got that letter I knew I had qualified for the full amount. I was told I would get a follow up letter to decide the amount and that I would be getting backpay up to 5 months after the onset of FND. There wasn’t a precise date on when that would happen and with Christmas and New Years right around the corner, it was hard to say how much it would be delayed from normal.

On January 5, 2023, I got my backpay and my first month’s payment. Due to my birthday, I was set to get my payment on the last Wednesday of the month for the month prior. This meant that my payment for the month of January would be deposited the last Wednesday of February. That detail threw me off at first as I expected I would get something the last Wednesday in January. That wasn’t the case unfortunately. But I did get a good payment for the year and a half that I was able to use to pay bills I had pretty much put on credit while I waited for a decision. I also rewarded myself with my rainbow light up cane from neo-walks.com

The Worth Of A Good Lawyer

I fully attribute my ability to have a strong case to my lawyer. But one of the biggest gems of my lawyer is that after my trial was over, his office helped me get extra payment to help cover the extra expenses of having a kid. This is not something that was even on my radar and I ended up getting a second back payment for this amount in April to cover my kid’s expenses. We’ve used this money to fund my kid doing chores that I can’t do due to my disability limitations. As a teenager, my kid is more than on board to earn money for doing things like laundry, dishes, and cleaning the bathroom. We also use these funds to replace her clear backpacks when they inevitably break. But none of it would have been possible without my lawyer.

Written by Missy O

A dedicated disability advocate who is a Certified ADHD Life Coach (CALC) through the International Coach Federation (ICF). Within Miss Geek Bunny, she acts as the Creative Director, non-fiction proposal coach and editor, developmental editor, accessibility reviewer, and designer. She also publishes her own work and shares her journey as a disabled writer.

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