Writing & Living with Chronic Illness
This probably comes as a shock to no one, but having a chronic illness sucks.
Even more sucky? Trying to incorporate said illness into your writing. When you’re any type of creative, you tend to let pieces of your real self slip into your art. Sometimes it’s conscious and sometimes not. In my case, I’ve always wanted to write something about living with chronic illness, but finding the right way to do so without saying too much has been a problem. I mean, surely no one wants all the dirty details, right?
Sophomore year of high school a lot changed for me. I got my first real boyfriend, I went to my first concert (Dashboard Confessional), and I became extremely sick. It happened all of the sudden and then slowly. I went to first period pre-calculus and my stomach churned. I was okay at math, but I was especially nervous about the test we had that day. So I went to school, took my math test and the entire time my legs shook and my stomach started sinking in on itself. I should have realized it was more than math-induced nerves.
I turned in my test and ran from the classroom, which was a sign unto itself that I was feeling pretty awful because I had a serious fear of rule breaking. I rounded the corner after the last set of halls, tried to ignore the curious-slash-concerned looks students were giving me, and finally made it to the bathroom right outside of the cafeteria. This is where I made a huge mistake––I relaxed for a second––just long enough to catch my breath.
And that relaxed breath did me in. One foot––twelve freaking inches––from the bathroom door, I vomited. All over the floor, all over my shoes, all over everything. It was the most humiliating thing, except for, of course, what happened next.
I fainted. Completely collapsed in a pile of my own sick. In the middle of the hall outside of the bathroom, during a class change no less. I remember standing. I remember falling. What I remember most though is coming to, a blur of voices a respectable distance away from me. “Someone get this girl some help!” they shrieked, among other less generous things.
I thought I’d experienced the worst stomach bug ever. But after that, I never really got better. The next few months were a whirl of doctor visits and blood draws and my mom dramatically worrying aloud that I was going to die. (Thanks, Mom).
Worst of all was the exhaustion. When I got home from school I’d take my homework to my bed, try to focus, but inevitably fall asleep. My parents would wake me up for dinner, I’d pretend to eat so they wouldn’t worry, and then I would go right back to sleep. There was no way to explain to my friends why I’d virtually disappeared from nights out, parties and the like. Nothing mattered more to me than sleep and I took it whenever and wherever I could. I was a zombie.
My pediatrician first told me to stop eating dairy. Then gluten, then sugar. And then to eat more fiber. Nothing changed. Finally my parents were fed up and took me to a specialist, who performed a colonoscopy and immediately identified me as having Crohn’s Disease. I finally had a name for the awful way I’d been feeling. Even better, there were medicines that my new doctor promised would bring relief!
Slowly and surely I began to feel better. My symptoms didn’t entirely disappear, and I learned over time which foods worked for me and which didn’t, but for the most part I felt much better than before. In the past fifteen years since my diagnosis, I have been in and out of hospitals and on a variety of medicines. Because there is no cure for chronic illnesses, maintenance is a lot of trial and error that never really ends. But the part of me that has taken the longest to heal? My mental health.
I carried a certain guilt with me for a long time. Guilt about the expensive medications, the hospital bills, and the fact that sometimes I was more tired than everyone else around me. I didn’t tell many people about my illness because I didn’t want to be seen as a burden, which resulted in a lot of awkward situations where I got sick and my poor shocked friends didn’t know what to do. But I finally reached a point where my denial was doing more harm than it was worth. Once I accepted that I was sick and always would be to a certain point, I was able to make peace with taking care of myself properly.
I think I would have reached that point a lot earlier if I’d read more books with characters like me. Maybe I wouldn’t have felt as lonely or misunderstood. Illness in the books I read as a teen was largely populated by sad endings. And while those characters carried a strength of their own, I craved more stories about characters whose sickness was just one background part of their story, not the entire plot. I wanted to read about main characters who had illnesses and found happiness and strength outside of those illnesses. I decided to incorporate those kinds of characters in my own work.
One important thing to remember when including chronic illness in fiction is that everyone’s experiences are going to be different. Just like different medication protocols work for different patients, not everyone will have the same food triggers or pain levels. Not everyone will have reached remission or found a way to deal with all side effects. We’re all at different points in our lives and our wellness journeys. The best we can do as writers is to stay true to our experiences and hope that someone else finds truth and comfort in them. Writing stories that include all different kinds of experiences is good for everyone. As for me, I’ve never felt a greater sense of self than when I decided to write about my illness.