Fighting for Disability Benefits (Part 2): The Hearing

In Part 1, I wrote about my Social Security Disability (SSDI) review and how Social Security no longer considered me disabled. My benefits were about to be terminated unless I chose to appeal their decision, which I did. They allowed me to continue receiving benefits, both disability payments, and Medicare, during the appeal process. The catch is that if I lost the appeal, I may have to pay those payments back.

I took that chance and called an attorney that I found through Cancer Legal Care. This attorney's sister also has multiple myeloma and struggled with the same maintenance drug I take. I knew she would understand my case and represent me well. However, she did not represent clients at this level of appeal. Frustrated but empowered, I decided to act as my own attorney.

I gathered the evidence

I asked myself what a lawyer would do and got to work on doing it. First, I requested my Social Security file. I received a CD that contained all records and correspondence. I got to see which information they used to make their decision and the reasons why I was denied.

Next, at my mother's suggestion, I wrote a letter to my US Senators, explaining my situation and requesting their help. Within a week, one of the senator’s assistants called me and notified Social Security that their office would be notified of the outcome of my case.

Then I wrote to both of my oncologists and also my palliative care team, requesting letters of support. They each wrote a thoughtful and detailed letter stating solid reasons why they feel I am not able to go back to work.

Finally, I asked my friend and former caregiver to testify at my hearing as a witness. I was allowed to call several witnesses, but I knew that he knew me and my situation best. He is the person that cooks and shops for me and does the work around my house and yard that I am unable to do.

I attended the hearing

Because of COVID-19, the hearing was over the telephone. During the call, I explained to the hearing officer why I am not able to work. She wanted to know details about my fatigue, memory loss, fibromyalgia, sleep, anxiety, and gastrointestinal distress. She asked me to detail how I spent my days, what chores I could do, and what things I could not do. I explained that I am in remission, so on paper it may look like I am doing well, but that my medical records were not telling the whole story.

My testimony was painfully truthful and at times quite emotional. She listened intently as I described how difficult this diagnosis has been for me. I told her how I never would have imagined being 50 on disability and struggling so much two years after my transplant. There are people that take advantage of the disability process, but I assured her that I was not one of them. I explained how I do everything I can think of to help my body heal and how devastating it feels when it is not working.

After we talked for about an hour and a half, she added my witness to the call. He explained what he does to help me and what he sees as the reasons that I cannot work. Even though he had not heard my testimony, he reiterated everything I had said.

Waiting on the outcome

I feel good about how the hearing went. The hearing officer was very kind and made me feel comfortable discussing such difficult things. Plus, I did all I could to prepare for the hearing and left nothing on the table. No matter the outcome, I am proud of myself that I did it all without the expense of an attorney. I am also especially grateful for the letters from my doctors and the testimony of my friend.

If the outcome is in my favor, I will continue on SSDI. If not, I will have to decide whether or not to appeal the decision again and move on to the next level in front of a judge, which could take up to a year, and again have to pay everything back.

Wish me luck, and stay tuned for Part 3.