How Writing Changed My Outlook on Chronic Illness

I have wanted to be a writer since I was a kid. Writing is second-nature to me. I shared a story with my friends for the first time in sixth grade, but I was attempting to write books starting at the age of 8. Growing up, I was bullied a lot, and writing was a way to escape the mental trauma of it. It seems that for every kid who refused to be my friend, I created a character in a story to compensate. Writing was always very cathartic for me.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

When I reached high school, I lacked time for writing. I was OK with this, having decided I would be a veterinarian or a horse trainer. I had a farm of my own and took care of my two ponies, so I had better things to do than write. My senior year, during a mission trip, I ended up injuring myself while on a run. This injury led to chronic pain, frequent dislocations and stiff muscles that I came to recognize eventually as Ehlers-Danlos syndrome. It was during this time that I was unable to ride horses.

My senior year, I had decided to take an easy course load to bring up my GPA. I knew going away to college meant selling my horses, whom I loved, and an easier course load would give me more time with them. But I was in too much pain every day to ride. I barely had the energy to walk to the barn every day. It was with a heavy heart that I was forced to ship my horses out to a boarding barn to focus on my declining health.

In January of my senior year, I began to struggle with chronic nausea that I now recognize as gastroparesis. I was going “crazy,” and I could not escape my body. I could not take a break to ride horses. Of course, I had just started my creative writing class in school. That is where my first novel was written. It was a depressing, dark story about a girl named Lex who witnessed her mother’s murder and was forced to live with her estranged father. Her father, as it turns out, worked for a secret organization working to create a facade of world peace. It would be the first book in a series. Even though the story was dark, it brought light to my world.

Writing was a way of escaping to my mind. I might not have been able to leave my body, but I could get so engrossed in a world of my own that I could forget about the pain and nausea that surrounded me. Writing became my everything. And, when I got to college, I knew exactly what I was changing my major to; I knew what my calling in life was.

As I grew to love writing, and I began to enjoy the research, I decided to start my own blog. Ever since, I have enjoyed publishing posts on faith, chronic illness and treatments I’ve tried. I have slowly learned to be more vulnerable and open with everything I have learned. Writing gave me an escape from the world, but it also taught me how to accept the pain I endured.

From the blog came my own comic strip, focusing on a girl named Kate, who dons a cape and becomes the EDS superhero, DisloKate. It focuses on a girl who sets out to save her city from the opioid crisis, using her high pain tolerance and hypermobility as superpowers. For me, this has been a constant reminder that though the pain is tough, I am tougher.

Writing has taught me so much about myself, and about how I deal with chronic illness. I am not perfect. I am flawed. My body is flawed too. It’s OK to have bad days, as long as I remember that good days are coming. After all, writing showed me that a story must have dark parts in order for the happy ending to come.