I was diagnosed with indolent systemic mastocytosis (ISM) in 2000. Even though I suffered almost daily, I continued to work until 2017. I loved my last job working as a boiler operator at International Paper — until I couldn’t do it anymore.
Forced to slow down
The reason I had to relinquish my job was injuring my back. At this point, I had yet to find a specialist who knew about my disease. I was under the care of a regular doctor. Once my back was hurt, I was referred to a spine doctor. It was there that I was told I had degenerative disc disease.
I felt defeated, because I had always worked. I worked physically demanding jobs to keep my body in shape, even though I was in pain daily.
But after my injury, I could no longer work. It took a couple of years before I accepted that I wouldn’t be able to go back to work with my back pain. During this time my disease also progressed, and I was having more flareups and bad days.
Applying for disability
In 2019 I decided to apply for disability. I felt defeated, and hated that I had to apply. It was a hard decision to make, but I had put the work in all those years and decided it was time. I started the application process, and eventually heard that I had been denied. I appealed against that decision, and months later received another letter stating that I had been denied again.
I started looking for a disability lawyer and found someone that looked over all my medical records and decided to take my case. Their first course of action was to appeal the decision again. Months later, the decision came back denied.
It was disheartening, but I did not give up hope. It was time to go to court and let a judge decide.
Over the course of several months, my lawyer worked on my case and a date was set. I was overwhelmed. I had never in my life had to be in court, and I was very nervous. My lawyer of course told me how to respond: Let him handle all the talking, and answer honestly any questions the judge directed towards me. While we readied my case, I entered a clinical trial in Salt Lake City, Utah, and was finally under the care of an oncologist/hematologist that specialized in the knowledge of ISM.
Going to court
On the court day, I was an emotional wreck. I could not even remember my name. But the judge I saw put me at ease, and all the overworked nerves instantly dissolved once she started speaking with me. At this point I had been in the disability process for approximately two years. She had already gone over my documentation before the case began, and I answered all her questions accurately and honestly.
My lawyer had told me prior to my case that we would probably have to wait a couple of weeks to hear a decision. But the judge made her decision and gave me her answer right there on the spot. She stated that I should never have been denied and approved my disability case. The relief I felt was amazing and I was so thankful that she listened to me and my doctors.
Getting disability is worth the work
If you are in the process of applying for disability, do not give up if you receive that first denial, or even the second denial. If you are on the fence about applying and you do not feel you are worthy of this even after working your entire life, please do not feel that way. I prayed and prayed about beginning the process. Prayed through the process and thanked God for the judge that was assigned to my case.
You can find lots of information online that will help you figure out where to start. The most important part of this is your medical records, including all the ER visits if you have any, along with written documentation from each doctor stating that you would benefit greatly from not having to work so you can focus more on your health.
Living with a rare disease is hard. This will make your everyday life easier, and you will be able to focus more on your health. Just do not give up, and trust the process.
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