Deborah A.

I have been uninsured since the day that I turned 26 years old, so it’s been nearly 4 years now. Just a few weeks after I turned 25 years old, I got really sick with a rare neurological disease called Guillain-Barre syndrome (GBS). In my case, it left me paralyzed from the waist down. I was still on my parent’s health insurance, so I took advantage of it all that I could, and often had to fight to get more physical therapy. By some miracle, by the time that I turned 26 years old, I was walking, but with leg braces on both legs. This year, I’ll be turning 30 years old, and I still have those leg braces on my legs, along with chronic fatigue syndrome, neuropathy, and tremors in my hands.

Thankfully, I’m better to a large degree — I managed to finish my M.A., lived abroad, but then COVID hit. I thought that after my M.A., it would be easier to find a job, but it was literally 3 months after my graduation that the pandemic fully began. The jobs that are out there are so physically demanding. I can’t handle standing on my feet for long, because my feet get numb and I get exhausted. Trying to find a desk job that will also either a) give me health insurance coverage, or b) somehow pay enough where I can manage to get health coverage through the Marketplace, has proven impossible.

I’ve tried to sign up for the Marketplace, but I can’t afford any insurance that they offer and neither can my parents. I don’t qualify for Medicaid, at least the way that it is designed at the moment, because I am not considered to be “permanently” disabled. I am eager for the Medicaid expansion to come to full fruition, and even more eager for Medicare for All in a hopeful near future. To have the opportunity to get help for my long lasting issues after GBS would improve my quality of life tenfold. I’d be able to potentially have more great days rather than just okay days. I’d be able to potentially get help to actually drive, even if it is with adaptive gear in the car. I could apply for jobs that I love to do rather than jobs that I need to do just to get health insurance.

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