When 'Being Sick' Became My Full-Time Job

As my illnesses progressed, I came to terms with the fact that I am no longer able to work a traditional 9-to-5 job. I’ve lost six jobs, all for different reasons related to my illnesses, in the last few years.

The smack of defeat, depression and embarrassment was so emotionally devastating with every single “I’m sorry, this just isn’t working out,” whether it was from me or my employer. I would cry my eyes out every time I saw it coming or came to the realization that I was going to be unemployed, again. I wanted to believe that I could still contribute to a company, make a difference in the world, provide a stream of income for our family, obtain health insurance and not worry if we were going to be able to pay the bills on my husband’s salary alone. I was lost. So much of who I was leading up to my diagnoses revolved around my title as a working mom. I loved my industry and I loved my work. I hung in there for as long as I could. When I was a kid, I never dreamed of being a stay-at-home sick person.

The moment I got clear about how bad things really were, it was a relief. Luckily enough for my family, we can get by on just my husband’s salary. It’s not easy, but we make it work.

In all honesty, my new job doesn’t pay a dime (quite the opposite, truth be told), but managing my illnesses is a full-time job. From making sure my medications are right and up-to-date, doctor visits, labs, tests, dealing with my insurance company, and most importantly making sure I and listening to my body. It was impossible to faithfully fulfill my responsibilities to my employers and manage all the things that kept me going.

I realized something along the way. I learned that my self-worth is not tied to a job title, a high salary or a fancy LinkedIn profile. Those things were for a healthier version of me. Being chronically ill, my bar is now set lower, but clearing that bar is as important as ever. My bar and measure for success revolves around those good days where I function like a normal person and enjoy life without the constant reminder that I don’t feel good. No raises, no promotions, no awards — just the satisfaction of having a good day is enough. I am enough just the way I am.

I traded in my power suit for pajamas and a robe this year. I’m still worth something, I’m still happy and I’m still making my small dent in this world.