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.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.

Community Poll

How has blood cancer impacted you financially? (select all that apply)