Several metaphors exist to help explain what life is like with a chronic illness like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), long COVID, Fibromyalgia, Multiple sclerosis, and Lupus to name a few. Miserandino has created a powerful “spoonie” community, but Carrie has never felt like that visual fit for her. Instead she uses the Disney’s Cinderella story to describe the day she became ill and how she navigates each day. A seemingly simple viral infection left Carrie wearing one glass slipper which serves as a constant reminder of her previous active self. The virus also somehow disrupted Carrie’s mitochondrial batteries. They can never be fully charged and can drain to zero at any moment. And as her energy supply begins to drop, an internal alarm starts to chime. Her own internal warning system that now exists because of her Chronic Fatigue. But Carrie’s ME/CFS internal alarms don’t follow normal ordinary, linear time. Her life now works on unpredictable time. Carrie never know how much time she has before the next alarm is going to go off. She has pockets of time, of unknown, varied lengths, to use to complete the desired task. Carrie is constantly starting and stopping throughout her day, as her energy supply waxes and wanes. What if the key for physicians to understand and help these patients is not more time but by synchronizing their linear, predictable clock with the patients’ wonky and non-linear clock?

Dr. Caroline Niederman is an educator, speaker, entrepreneur, and equine veterinarian-turned-consultant changing the narrative for people who fall outside the lines of conventional medical diagnosis and treatments for certain chronic long-term conditions. She uses her medical background, journey with a chronic invisible illness and the Disney Cinderella story to bring to life the stop and start journey these patients are on so they can be seen and outlines a path for physicians and patients to partner for effective long term care once their respective clocks are coordinated.