I detest the describing myself as “unemployed.” I was filling out some paperwork recently and was asked to select from four options-employed full time, employed part time, on disability, or unemployed. While my illnesses and chronic pain prevent me from working, I am not yet receiving disability. So I selected unemployed, adding the caveat that I am disabled.
So, why is this such a sore spot for me?
Because being sick is a full time job. My job every day is to listen to my body, to take care of it, and to do all I can to mitigate my symptoms. My job is also to keep track of numerous appointments, filing deadlines, and new referrals. I spend hours upon hours a week researching treatments, reading about others’ experiences with my conditions, and documenting my symptoms so the doctors can have an accurate picture of my health.
There is no PTO, there is no vacation. This is an all-day, every day thing. It’s literally life or death. (Okay, that may be a bit dramatic!)
In the last year, my illnesses have forced me to become a secretary, an insurance expert, a lawyer, a historian, a geneticist, a researcher, and most importantly, an advocate. If I don’t advocate for myself, no one else will. I have fought long and hard to get to this point.
I am not unemployed. I am an advocate for my health. I am fighting for my life. And being sick is my full time job.
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