Note: This article was originally published on The Mighty on August 1st, 2016
The voice inside my head said, "You need to write."
It was takeoff. My head was spinning and my stomach started churning. My seat was right on the wing, so I didn't have my go-to fix, which is to look out the window at the houses getting smaller and smaller. The airplane tilted all the way to the right and then all the way to the left. Just before I reached for the barf bag, the voice said, "Write."
Motion sickness has been one of the most persistent symptoms of my chronic Lyme disease. When my illness flares, driving makes me so sick I have to sit on the couch for half an hour after I get home and wait for the nausea to go away. It is getting better with treatment, but the last time I flew it reared its ugly head. I took out my laptop for a distraction and slowly my brain came back to me.
Many people with chronic illness turn to writing as a way to cope with being sick. Some of the most beautiful writing comes out of a need to express pain.
For me, writing has always been the activity that takes me away from my symptoms. Moving my fingers over the keyboard to the tune of my thoughts soothes me in a way nothing else can. It puts me in a meditative-like state, and the words pour out of me like a vinyasa flow. Even on the days when the words come out awkwardly and clumsily, I push myself to keep typing. I can always fix it later; the purpose is to find my groove and forget about Lyme for a while.
Writing also helps people with chronic illness because it is therapeutic. There are a lot of things I can tell the computer screen that I can't tell my loved ones. When I'm with friends or family the words don't come out right. I usually come across as a complainer. The words come out better when I have time to think about what I want to say and write it down.
Chronic illness also leads to a lot of anger and frustration; writing takes those emotions and gets them out of your head. It’s a cleansing process similar to therapy. When you feel like crying or screaming because you got bad test results or your medication is causing a nasty side effect, grab a pen and write it all out.
Writing seems like a solo practice, but for people with chronic illness it is creating communities all over the world. Thousands of people write or blog about their experiences. When we find each other on the internet it makes us feel less alone. It's a powerful thing to know someone out there is feeling the same way you do, even if you've never met.
Last, but not least, writing spreads awareness. Even if all you can write is a 140-word tweet, you are spreading awareness. Websites and blogs have given a voice to people who feel silenced in one way or another. The more people who hear our stories, the more empathy and understanding there will be for our illnesses, which trickles down to more funding for research and treatment.
Writing is an easy activity to do from bed, and it doesn’t expend a lot of physical energy, which is ideal for people with chronic illness. And there are so many different things to write: tweets, blog posts, personal essays, articles, poems, books, plays, screenplays, letters to legislators…the list goes on and on.
Writing might not be your thing. I have a friend who says writing, even for fun, feels like an assignment. That's OK – writing doesn't have to be your "thing." Find any activity that helps you cope with your illness. It could be singing, woodworking or rocking your baby to sleep. These things might not be all that easy to do on a plane, but should work in most other circumstances.
I was up in the air for two and a half hours from a layover in Dallas to my hometown of Minneapolis. After I started writing, the flight went by in an instant and my motion sickness faded into the background, like the hum of the airplane noise.
"Any man who keeps working is not a failure. He may not be a great writer, but if he applies the old-fashioned virtues of hard, constant labor, he'll eventually make some kind of career for himself as writer." - Ray Bradbury
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.