I’m 49 years old and started having seizures at age 12, so I’ve been having seizures for 37 years now. It runs in our family—I’ve had or have aunts, uncles, nephews, and a couple of cousins who have them too, just like psoriasis runs in our family.
All my life, I’ve never been able to work. I did get a job once, but I didn’t put on the application that I have seizures. A bunch of people who knew me or went to school with me also worked there, and they knew I had seizures. It eventually got back to the manager, and she asked me about it. I told her the truth, and she said if I had put that on the application from the beginning, she wouldn’t have hired me.
Because my seizures are genetic, for over 20 years they could never find any proof on the tests they gave me to show that I actually had seizures. I’ve had one where I fell off the bed and knocked out my two front teeth—and I didn’t even realize it until my aunt told me. I’ve broken my arm during a seizure, and sometimes I would get up and walk around or do things I wouldn’t remember afterward. I’ve burned myself with a cigarette before. Last year, I cooked a cup of noodles in the microwave and accidentally spilled it on my arm, causing a second-degree burn.
In 2015, I had a couple of seizures back to back and had to be put on life support—not including all the other times I’ve had seizures and hurt myself. After 27 years of having them, taking medicine, and going through testing, they could never find anything on the EEGs. Because of that, I was always denied help—no disability or Medicaid—because they couldn’t prove I had seizures.
I kept seeing the same neurologist all those years, and he always said he couldn’t find anything. But after 27 years, while I was in the hospital having a seizure, that same neurologist finally found something on the test that proved I really do have seizures. Even after that proof—and almost dying while on life support—I still haven’t been able to get help. I’ve never had a steady income and have had nowhere to stay most of my life. I’ve had to live here and there, even on the streets or in abandoned houses and buildings.
I’m still trying to get disability after being denied probably five or more times over the years.