Being evaluated for disability payments is always a tug-of-war
I dread receiving those envelopes, because I never know what to expect
“Social Security Administration.” These three words on an envelope can make my heart drop. They’ve held me financially hostage for two and a half years, and now I face them again, after receiving paperwork for my disability review.
I never imagined becoming medically “disabled” before the age of 40. In 2018, after experiencing a rough bout of the flu, I was sent to the Medical University of South Carolina (MUSC), a nearby teaching hospital, because my doctor was concerned about my blood work. I hadn’t felt well for weeks, but I assumed recovering from the flu was just taking longer since I also suffer from lupus. However, my doctor knew something major was wrong.
To my surprise, after only a few hours of testing, the medical team at MUSC diagnosed me with immune thrombocytopenia (ITP). At the time, I didn’t know much beyond what I found on Google while in the hospital. However, having the word “immune” in the diagnosis made sense, considering my existing struggle with lupus and its various autoimmune symptoms.
Whenever I got sick or stressed, my body would begin attacking itself. Skin rashes, hives, recurring illness, fatigue, body aches, and eye swelling were just part of life for me. So when they informed me that ITP was another autoimmune condition, it felt familiar. Statistically, it’s actually common for autoimmune diseases to occur in pairs or multiples.
Little did I know, this was just the beginning. Over the next two years, I experienced several more ITP symptom flares, including nosebleeds, bleeding gums when brushing my teeth, heavy periods that I managed with birth control pills, and little red dots and rashes on my legs. These were seemingly minor annoyances, but I was unaware they were warning signs before I faced an even greater crisis.
In 2020, after enduring another wave of intense symptoms and illness, I assumed my lupus and ITP were flaring up together. But this time was different. The symptoms persisted for weeks, and then the bruises appeared — large, deep purple marks all over my body. Again, this seemed “normal” for me because being anemic and having a blood disease often went hand in hand. However, I eventually became too weak to function. I was vomiting blood at work, developed red spots all over my legs, and started losing feeling in my legs. Something was seriously wrong.
Ultimately, I was admitted to the intensive care unit for nearly two months. It turned out that I was experiencing another ITP flare, but this time it brought two other rare autoimmune diseases with it: thrombotic thrombocytopenic purpura and atypical hemolytic uremic syndrome. My immune system was attacking every component of blood production in my body. (The only blood element not involved was my white blood cells.)
The situation was more dire than I had anticipated, and I nearly died. The combination of three diseases led to multiorgan failure and left me with permanent damage that I still deal with today. I had no idea that Sept. 15, 2020, would be the last day I would work.
When I finally left the ICU, I had a packed weekly schedule of dialysis, Soliris (eculizumab) infusions, and follow-up appointments. Dialysis required three sessions a week, lasting up to four hours each, with Soliris infusions at the cancer center once a week for three hours. How was I supposed to work under these circumstances?
So I began the disability process. In the U.S., you can receive government-subsidized income if you are too ill to work. However, I didn’t realize the COVID-19 pandemic would delay this process. It took two denials and two and a half years for me to finally receive disability benefits. During that time, I lost my free child care because I wasn’t working, didn’t qualify for unemployment since I couldn’t apply for jobs, and ultimately lost my home and car. I genuinely don’t understand how the government expects someone to survive in this situation.
After a lengthy battle and court proceedings, I finally received my disability. However, since I’m still young and have such rare diseases, I will be evaluated every two to three years to determine if I still qualify. This is terrifying, and I have a lot of trauma related to this uncertainty. Despite being stable, I’m still very sick and have developed more comorbidities. It is nerve-wracking to think about.
My income, my ability to support my children, and my capacity to make a significant house payment will be in the hands of a random person who knows nothing about my complex health issues. I must clearly communicate my daily struggles within the 16 pages allotted for this evaluation. Just 16 pages can decide my financial fate. This is a scary process, and I hope and pray that those at the Social Security Administration will be understanding.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.Â
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