My Journey To Filing for Disability, Part 2
Last updated: December 2021
Filing for disability is a process that you truly can’t understand unless you've been there. It’s necessary, but it's a journey. When you are doing your research it doesn’t look like it would be that bad. You think, "It seems pretty straightforward. Surely it can’t be as bad as everyone says!" Well, let me be honest, for most, it is a process and a journey. So when you file you need to be ready to be on the journey that may take several years.
Filing for disability
In October 2016, I sent in my initial application for disability. Less than 2 weeks later, I got my denial letter. I knew there was no way they could have even looked at all my records before they denied me. I know they couldn’t have taken into account my lupus or fibro, my migraines, or my poorly functioning adrenal glands. As well as the laundry list of other conditions I have developed over the years. I was really bummed when I got that denial letter. But I was later told that virtually everyone who doesn’t have one of the conditions included in the compassionate allowance list, is denied. Which would have been nice to know ahead of time.
My first disability denial
Even though I was feeling totally defeated I decided it was time to get a lawyer. I took the time to find the top disability lawyers in my area and called several. Once I found the one I felt most comfortable with I set up an appointment. The appointment went well and I felt comfortable moving forward with this law office. I have to say it was a relief to know that I would not have to pay legal fees unless I won. Because at that time I had no real source of income and was living off my savings. At that first appointment, I signed all the papers that day to file my appeal.
I was given some very good advice during that appointment. Advice that I now give EVERY single person who asks for advice about filing. I was encouraged to journal daily and include how I was feeling, rating my pain and including where the pain was. As well as any symptoms I may have had that day. This was not just for lupus or migraine, this was for all the many conditions I had. By the time it was all said and done I journaled my daily symptoms and pain for almost 2 years. I originally filed in October 2016. My hearing was scheduled finally, in June of 2018.
My disability hearing
The hearing itself was pretty straightforward; my lawyer's office had sent the judge/court over 8,000 pages of my medical records. Beforehand I had been encouraged ahead of time to get up and move around because I said that I couldn't sit for more than a few minutes. If you are saying you can't sit for more than 30 min due to back pain, then you need to do that during your hearing. I was also encouraged to dress nice but simple with little makeup and a simple hairstyle. The judge was very straight to the point asking questions about what I could and couldn’t do. As well as how my many conditions hinder my ability to work.
There is a vocational expert in every trial. This person has been taking notes the whole time regarding what I could or couldn’t do. What position cause symptoms etc. At some point during the hearing, the judges will begin to ask the expert if I (or you) can do this job, and they reply yes or no. This goes on for a bit. In my hearing, the judge finally asked the expert if there was anything that I could do for work. She said there was nothing.
Waiting for the decision
Sadly, there was no decision from the judge the day of my hearing, I knew that would probably be the case. But my lawyer walked into the conference room where I was waiting to debrief. She came in all smiles and told me I won due to what the vocational expert said. I didn’t want to take her opinion for a sure thing so I waited, and waited. It was such a LONG journey during which I felt pretty hopeless and defeated. People often ask for advice going into their hearing and the only thing I can really say is, to be honest. Follow the recommendations and advice your attorney gives, and journal your daily symptoms. The journey of filing for disability is long and honestly a pain in the behind. But stick with it, it’s so worth it in the end.
Finally, 4 months after my hearing got my approval letter. I remember sitting and reading it and just bawling. Crying because I won. But also crying because it was the end of an era. An era that truthfully I was far from ready to give up. Leaving the career that I loved was the hardest decision I have ever made. But it was for the best in the long run. Now I share my story here in hopes that it might help someone else.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?