Five years ago, author L.J. Stanton’s future took a dramatic shift. An equestrian for much of her life, she’d earned an equine sciences degree in college and was training horses and teaching riding lessons for a living. Then she was diagnosed with two genetic disorders: Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS).
“I didn’t really look at it as anything serious until about five years ago with the diagnosis,” she says. “And I realized that training horses and teaching riding lessons was just not feasible anymore, given my body.”
After talking with her husband, she quit her job and turned to her other lifelong love: storytelling.
Stanton is one of countless authors with chronic illness who simultaneously manage their health and their writing careers. In 2018, the National Health Interview Survey (https://www.cdc.gov) found that more than half of US adults had at least one of ten chronic conditions, and more than 27 percent had more than one. Now, with many people experiencing lasting effects from COVID-19, more are learning to deal with long-term illness every day.
Stanton remembers having to make the same adjustment for herself. “I kind of understand what they’re going through,” she says, “because I felt like I was completely able-bodied, right up until basically the moment I wasn’t.” For her, finding a balance between her health and her writing means trying to push back against the “hustle culture” ingrained in the author industry. She tries to view productivity as progress toward a goal rather than reaching a certain word count, and she’s made accommodations to her workspace to better suit her needs. But when she starts to push herself, her support system—her husband, her best friend, and her service dog, Chekov—offers the most help.
It’s that support and sense of community she hopes other authors in her situation can find with one another through Reddit, Discord servers, or even writing conferences. Giving yourself space to grieve what you’ve lost after a new diagnosis is important, she says, but so is finding people who will help you afterward to focus on what you want to accomplish.
The work isn’t just for those who have health conditions. Even authors without chronic illness can provide support to those who need it and improve disability and invisible illness representation through their books, something Stanton encourages.
“As authors, we have this really powerful medium for change,” she says. “I think that if we see more of that included in writing, it is going to help people more who are now newly disabled and trying to navigate these really strange, uncomfortable waters.”
