The nightmare of disability

I believe that I have made a ton of mistakes while applying for disability. There is so much that I wish I knew before starting the process. I knew that the first time I was going to be denied, I was prepared for that disappointment. I knew I didn’t have my doctors full support going in, she didn’t want me to really file and I do understand that, but sadly I didn’t have any other choice as I was unable to work and I wasn’t good at direct sales business being strictly online. I had so many questions and had no clue as to what I was doing.

I turned to google and chose the first lawyer I found that was reasonably close to my house, as I didn’t want to be traveling an hour to appointments as I no longer was able to drive myself. I had to start the process myself online. Then wait 3 months for the denial letter, to be able to set everything up with my lawyer. There’s is a lot of waiting in this process, waiting for files, and paperwork and waiting for the state or whoever to appoint a judge and hearing date. Then waiting for the judges decision.

My biggest mistake was not having my medical files so I could review them. The other mistake was not standing up for myself enough with the doctors I had seen. My primary care physician is amazing, but she can only do so much before the specialists have to step in. In my case these many specialists that I saw were not very keen on helping me. I totally understand that my challenges are confusing and hard to understand, but I can not get the right help or diagnosis without their help. I was past the small stuff of trying sleeping pills and physical therapy and they didn’t like that I wasn’t willing to try those anymore. I wanted more aggressive help, bigger than pt and sleeping pills.

For the most part these doctors were nice to my face, but sadly because I didn’t have my records before the hearing I didn’t realize how rude they were in their notes and how the falsified information and the downplaying of my challenges. Some even went as far as to write down the exact opposite of what I said. For example if I stated I needed a cane and walker to get around, they stated I didn’t need those items. They stated that I would claim my right side was having the most trouble, but later stated that it was both sides and therefore I was making it up, because clearly my challenges couldn’t possibly get worse.

Now I had had a couple physicians or their assistants say rude things to my face, but then I was able to defend myself. To have to wait 3 months after finally getting a hearing and thought it went good, then to see the denial letter totally full of lies and rudeness is enough to send someone over the edge! I do now have all my medical files, they’re are way too huge for me to be able to print them and try to prove these doctors wrong. Sadly I have no clue how to get this false information off my record because I no longer see those specialists, and some are no longer in the practice. I am very thankful to have found 2 amazing specialists this year and with their help have proved those doctors wrong and have gotten a diagnosis for 2 of my challenges I supposedly was making up.

Another mistake I made was not tracking my symptoms closely. I had started this when I first was diagnosed with fibromyalgia back in 2011, but sadly I got away from doing that. I tried off and on to keep track, but didn’t fully sink in until May of 2019. Now I have tracked what symptoms I face daily, as well as the different challenging episodes and when they occur. I have been able to show documentation to my doctors and that helps them be able to help me more.

I did take the time to go through the entire denial letter four times and write out corrections and what my life is like with these challenges and sent that and some of the tracking documents to my lawyer to be sent in with my appeal. Now comes more waiting to see if the will overturn the judges decision.

The biggest and most important thing I can tell anyone that is going to apply for disability with an illness that is hard to understand and mostly invisible is have and review all your medical files and get any mistakes or false information corrected beforehand. Also keep track of everything, I mean everything from symptoms to doctor visits to anything you might feel is important to prove your case.

I have no one else to blame but myself for not doing all of this earlier, I know I face the challenge of memory and thinking issues, but that should have made me try harder and use more notes and reminders. I know the whole disability process can take years, but the more you are prepared and have documentation, the better your case is going to be. I truly hope that my story helps someone out there to get better ahead of all you face with applying. I was so focused on getting a diagnosis and help than getting ready to prove all my challenges to a judge.

Sadly when you have an invisible chronic illness you do get so consumed with getting a diagnosis, even though you aren’t any closer to getting relief and help once you get the diagnosis. We get so relieved that we have something to call what we go through. But in all honesty we should be focusing on tracking and documenting everything to help our cause and in turn that documentation can help get the diagnosis we long to receive.

It is one nightmare I never wanted to have to deal with, but sadly I had to and it’s not even close to being over.


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