When I was 29 years old, I got so sick that I had to stop working. I had this intermittent burning pain in my legs, I woke up each morning with sore and swollen joints, and I had a visible tremor.
My body was so sluggish that I often needed help to get to the bathroom, and my brain was so foggy that I could barely read. I eventually quit my job as an editor before I was fired for making too many obvious mistakes. I rarely left the house.
Presented with all of these symptoms, my doctor ran a few standard tests and told me that everything looked fine. She didn’t see any reason to refer me to a specialist and she suggested an antidepressant if things didn’t improve.
WATCH: Sarah Wilson on why women burnout, get tired and sick. Post continues below.
I was devastated. I’d lost my income and my social life and I didn’t know where to turn for help. My husband of less than a year thought I was dying. My world was crumbling.
I was 22 the last time my world fell apart. That’s when my dad died and I felt devastated and alone.
I went hunting for stories that perfectly captured the grief I was feeling. I read novels and essays and memoirs about losing a parent and they made me feel seen, like I wasn’t the first person to ever go through this.
And so later when I found myself chronically ill but undiagnosed, I went looking for stories about that too. But this time, I couldn’t find them. I couldn’t find any traditionally published essays or books about life before diagnosis. I found lots of stories that wanted to offer me hope, but none that could offer me solace.
But how could that be?
Research shows there’s a whole lot of people living with unexplained symptoms of a chronic illness right now, just like I was.
I bet you know someone with an undiagnosed chronic illness. Maybe they complain about their health all the time or they always seem to cancel plans. Maybe this has been happening for years and you’ve started to write them off as a hypochondriac, a drama queen. Maybe you believe that if something was seriously wrong, their doctor would have figured it out by now.