I’ve never been able to answer the question “what does sickness feel like?” Well. How can I explain the hundreds of small adjustments I make every day? Or a challenge business and hobbies? or the isolation of having to cancel it might be hard to move other aspects of my life, too: choosing my clothes to protect my joints from the cold; refusal of foods that I love because of nausea; Or having to sleep at 9pm because I need at least nine hours of sleep to function properly.
through my Wilde Investigations book series, I found the audio to explain my world to others. For some readers, my books offer a glimpse into a life they were fortunate enough not to have to experience firsthand. For others, they finally see themselves as a central figure in a world full of magic and wonder. The greatest compliment readers can pay me is to tell me that my books make them feel visible.
the nature of Diseases like EDS or CFS are invisible. When I work my dog in the obedience ring or give a speech, it would be impossible to tell by looking at me that I have a chronic condition. It might sound weird, that’s how I prefer it. On a good day, when I don’t need a stick or rope, no one needs to know I’m sick.
But the extreme disappearance of many chronic diseases means that their representation in the imagination is very important. It offers a glimpse under the mask we wear every day, shows the difference between appearance and reality, and I hope it helps us be more empathetic in the way we treat others.