I have never been able to answer the question “What is it like to be sick?” particularly well. How can I explain the hundred tiny adjustments I make every day? Or the challenge of chores and hobbies? Or the isolation of having to cancel plans yet again because of a flare-up? It can be challenging to convey other aspects of my life, too: Choosing my clothes to protect my joints from cold; turning down foods I like because of nausea; or having to go to bed at 9pm because I need at least nine hours of sleep to function properly.
Through my Wilde Investigations book series, I have found the voice to explain my world to others. To some readers, my books offer a glimpse into a life they’re lucky enough to never have to experience first-hand. For others, it’s finally seeing themselves as the central character in a world filled with magic and wonder. The greatest compliment readers can pay me is telling me that my books made them feel seen.
The nature of illnesses such as EDS or CFS is that they are invisible. When I work my dog in the obedience ring or give a talk, it would be impossible to tell from looking at me that I have a chronic condition. As strange as it may seem, that is how I prefer it. On a good day, when I have no need for a cane or a sling, no one needs to know that I’m sick.
But that very invisibleness of many chronic illnesses means that having them represented in fiction is all the more important. It offers a glimpse under the mask we wear each day, shows the difference between appearance and reality, and, I hope, helps us be more compassionate in the way we treat others.