One Glass Slipper: Navigating ME/CFS with Dr. Carrie Niederman
Remember Disney’s Cinderella? When her fairy godmother grants her wish to go to the royal ball, Cinderella is magically gifted with the perfect glass slippers. She meets her prince and falls in love. All her dreams come true.
But later that night, Cinderella loses one of her glass slippers trying to flee the ball in a hurry. The magic disappears as reality sets in. This is what it can feel like to develop ME/CFS. The magical spell of life as you knew it is broken, and not just for a short time like in Cinderella. Permanently broken.
I know the feeling all too well. My name is Dr. Caroline “Carrie” Niederman, and I am living with ME/CFS. Read on to learn more about what it’s like to have this complex illness, my advocacy and education work, and how you can get involved in our community efforts to spread awareness.
Navigating ME/CFS: An Invisible Chronic Illness
Roughly 800,000 to 2.5 million Americans are thought to have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). My experience developing this invisible chronic condition was similar to many others. I was walking my regular route from work on a day just like any other, when I suddenly developed flu-like symptoms. When I woke up the next day, it felt as if my whole paradigm had shifted. No more ball gown or horse-drawn carriage, and one glass slipper lost forever.
This is the reality for those who suffer from chronic, invisible illnesses. We become stuck in the moment, stranded outside our castle, while everyone else lives on. Suddenly, it feels like time is no longer linear. I never know how long I have until my internal alarm bells go off, when my new personal, unpredictable clock that arrived when I developed ME/CFS will strike midnight.
What is ME/CFS?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), often referred to as chronic fatigue syndrome, is a complex and serious post-viral illness that can cause neurological, immunological, or metabolic dysfunction. Its hallmark symptom is post-exertional malaise (PEM). In other words, those of us with ME/CFS are intolerant to exertion. If we overexert ourselves doing various physical or mental activities, we experience extreme fatigue.
Symptoms of ME/CFS can include:
Post-exertional malaise (PEM)
Impairment in function
Sleep difficulties
Cognitive issues
Sensory or orthostatic intolerance
Gastrointestinal issues
Flu-like symptoms
Pace, Plan, Prioritize: Making the Best of One Glass Slipper
My recovery journey has been long and arduous. Just like anyone managing chronic fatigue, I’ve had to learn the importance of energy, how to spend it, and how to preserve it. Daily activities can deplete the battery fast, like grocery shopping, washing dishes, and appointments. And every day brings uncertainty about when my internal alarm will ring, alerting me that my energy supply is drained to zero. It’s taught me that energy is an invaluable resource, and we can learn to manage it wisely by managing time more wisely.
That’s where the three P’s come in: pacing, planning, and prioritizing.
Pace: Break up big to-dos into smaller tasks spread throughout the day. Have built-in rest periods too. Stop, pause, sit, rest, and reflect when you can.
Plan: Create structure and routine in your days, weeks, and even months. Plan ahead as much as possible, especially for bigger events that involve many tasks you could potentially spread out over time.
Prioritize: You don’t have to be a superhero! Perfectionists–give yourself some grace. Seek out activities you enjoy, delegate tasks more often, and focus on achieving balance over productivity.
It can be frustrating to have less energy than you used to, and to not know when you might hit the proverbial wall. Pockets of time throughout the day where you have the energy to do tasks can feel unpredictable. But by pacing yourself, planning ahead, and prioritizing what truly matters, you can manage ME/CFS and enjoy life.
Remember: this condition doesn’t define you, and you’re more resilient than you think. Lean into family and loved ones, and don’t be afraid to open up about how you’re feeling. There’s strength in vulnerability.
Bridging the Gap: Education, Awareness, and Empowerment
Equipped with both a veterinary medical background as an equine dentist and lived experience as a patient, I am a fiercely passionate keynote speaker, advocate, and educator on ME/CFS and related invisible disabilities. My mission is to bridge the knowledge gap between patients and their loved ones, their workplaces, and healthcare professionals through the Cinderella metaphor. Just because it’s invisible doesn’t mean it isn’t real.
It’s estimated that up to 24 million people around the world are living with ME/CFS. And yet, there are so many misconceptions about it. Healthcare providers and workplace management still have limited knowledge about how to best treat and take care of those with this invisible disability. It’s time to change that.
Join the Movement
I’m here to give a voice to anyone experiencing this complex and devastating illness through my advocacy platform, workshops, seminars, and keynotes. The blog itself will serve as a source of information, support, and resources for people living with ME/CFS, long COVID, and similar conditions, and for their families and loved ones. You don’t have to go through this alone, and help exists.
Let’s spread awareness about how we can best support those with chronic fatigue syndrome, whether it be in a clinical setting, workplace, or right at home.
Looking for ways to help your patients, employees, or loved ones with an invisible disability? Reach out to me here or on LinkedIn to learn more about my advocacy and educational programs, events, or other educational efforts. Because health and well-being are a team effort.
