Fighting to Keep Disability Benefits (Part 1)
Last updated: April 2023
I applied for Social Security Disability (SSDI) soon after I was diagnosed with multiple myeloma. With a broken femur and an upcoming stem cell transplant, I qualified for disability benefits without much hassle. And although I had initially planned on returning to work, side effects of my maintenance chemotherapy regimen have made that impossible.
For the past two years, I have been receiving disability payments. And for the past few months, I have also signed on with Medicare, my only current form of health insurance. Now I am at risk for losing both.
I underwent a continuing disability review
Several months ago, I received notice from SSDI that my disability case was under review. I hadn’t expected a review, so it both surprised and overwhelmed me. In addition to the 20-plus pages of paperwork I had to fill out, a friend also had to answer a battery of questions about my habits and health.
What did I do from the time I woke up until the time I went to bed? What symptoms do I have? Which medications do I take? How much could I do? What could I not do? We answered honestly and completely and mailed the papers back within the 10-day window. I was certain I would be re-approved.
Keeping disability benefits wasn't going to be easy
But a month or two later, I received another letter. Now they required me to take a several-hour cognitive exam. It felt like my entire sense of financial and medical security was coming down to this one exam. How could a 2-hour meeting possibly give them an accurate window into my world of unpredictable and relentless fatigue, diarrhea, sickness, and chemo brain? I contacted an attorney who told me to give it my best effort, be honest and show my emotions.
I did as she advised. As I drove away from the meeting, I had no idea how I had actually performed on the test. But I knew that I had been truthful and transparent - and quite emotional - about my condition. Breathing a sigh of relief, I assumed once again that I would continue to receive disability benefits.
I received a letter of denial
I was wrong. Last week I received a letter of denial in the mail. In the letter, they said that since I am in remission, I am no longer considered disabled. They agreed that I cannot do my former job as a math teacher. But given my age, education, and work experience, they insist I can do work that is “simple, not stressful, and less physically demanding.”
I now have 60 days to appeal my case and 10 days to let them know if I will. Do I appeal their decision? Should I hire an attorney? The catch is, if I appeal and lose, I will need to pay back any monthly benefits received during the coming months. And if I win, I’ll have to pay an attorney. Either way, it will cost me thousands.
My body is not ready to go back to work
It's hard to make sense of this. Yes, people do abuse the system, but I am clearly not one of them. I have worked hard my entire life and always done more than required. I homeschooled my kids - two of which are on full scholarship at a private university. And I was working 60 hours a week at a 40-hour job until blood cancer came crashing into my life.
I’ve never asked for an easy ride, a bail out, or a free lunch ticket. But as much as I wanted to get back to my pre-cancer life, my 50-year-old body is simply not ready. Some days I nap twice and still don’t have enough gas to make a decent meal.
I am trying to feel better. I exercise, eat well, meditate, and keep a positive attitude. Most days, I even take freezing cold showers to manage fibromyalgia pain and fatigue. I dream of running marathons and climbing mountains like other blood cancer patients I know. But at the moment, my marathon is a long walk with my dog. And my mountain has become an uphill fight to keep the benefits allowing me to simply survive.
Stay tuned for Part 2 when I will share the decision and outcome in an upcoming article. In the meantime, feel free to share your experiences with the disability process in the comments.
How do you feel about your support system?