My name is Olivia, and on November 30, 2020, at 27 years old, I was diagnosed with HER2+ stage 4 inflammatory breast cancer (IBC) with bone metastasis—just after having my baby boy. Soon after starting treatment, I learned that IBC qualifies for Social Security Disability Insurance (SSDI) under the Compassionate Allowance list, meaning applications are expedited for approval.
I applied in January 2021 and was quickly approved. However, I still had to wait for the required waiting period before receiving benefits. By May, I received my first check, which was a huge relief.
For the next few years, I continued receiving benefits, along with the routine annual paperwork to confirm my eligibility. But in May 2024, after submitting my paperwork as usual, I was shocked to receive a notice stating that Social Security had determined I could work “in a lesser capacity” and that my benefits would stop after July. It was heartbreaking. I didn’t understand how I could be considered “undisabled” while still receiving lifelong treatment for metastatic cancer. Yes, I was working a small, flexible job from home, but it wasn’t nearly enough to sustain my family.
(A quick but important side note: It’s crucial to maintain a work history and contribute to Social Security. Your benefits are based on your work record, so the more consistent your earnings history, the higher your monthly payments.)
I immediately filed an appeal, but my case was left in an indefinite “pending” status.
Then, in October, I attended the IBC meet-up, where I learned something critical: What your medical records say matters.
At my doctor’s appointments, when asked how I was doing, I always answered, “pretty well.” And overall, that was true—I managed my side effects and just dealt with them. But in reality, those side effects made daily life incredibly difficult. Since I never explicitly detailed my struggles, my medical records made me look “fine” to Social Security.
After learning this, I asked my doctors to update my records to reflect the true impact of my disease and treatment, even in survivorship.
By January 2025, I still hadn’t heard back about my appeal, so I decided to visit my local Social Security office in person, bringing my updated medical records. Unfortunately, the worker I spoke with told me there was nothing they could do—it was just a waiting game. I left feeling defeated.
But then, something unexpected happened. The very next day, I checked my bank account and saw a deposit. A few days later, I received an official letter: My appeal had been approved, and my benefits were reinstated!
I want others to know how crucial SSDI can be. When I was first diagnosed, I assumed I’d go back to work once treatment ended. But the lasting side effects of both past and ongoing treatment have made working nearly impossible—especially at such a young age, with so much time left in my career. Being out of the workforce for so long with little to no income is terrifying, and SSDI has truly saved my family.
