Gorgeous cloud-dusted sky over scrubby ground and shrubs, red rock formations, and snow-peaked mountains in Colorado–on a day my family was hiking while I rested at home.
This piece isn’t about children’s books. It explains why I’ve missed most aspects of the children’s literature world since 2019–the month my first book The Amazing Idea of You (Lundquist, Bloomsbury) launched. Despite my determination and love of books, my care for children, my publications remain few. I have an illness that often renders people invisible. It has not been easy for me to talk about it publicly. The ongoing grief of missing so much life is vivid; I worry anything I say will feel like a wail. And there is much I am thankful for, too. But I want to start talking about this experience more.
Right now, I’m needing to reach out to my local community for more support, so I wrote this originally for them, and for those who have asked what ME/CFS is. And for anyone who knows someone with a complex illness or who has one. I’m not a medical professional. This is simply my best understanding of ME/CFS after having to become my own doctor, since 95% of my providers don’t know anything about it.
Learn more here: CDC, #MEAction, Bateman Horne Center, ME/CFS Clinic MN
ABOUT ME/CFS–FOR THOSE WHO HAVE ASKED
My first nine doctors didn’t know what I had when I suddenly became so weak that standing was work. Yet the medical world has known about ME/CFS illness for a long time. Perhaps because it disproportionately affects women, it has long been ignored, denied research funding, and stigmatized. People applying for disability often focus on other illnesses to win their cases. I had one doctor say it was in my head without running tests. One focused an appointment (which made me very ill to attend) on proving I didn’t have ME/CFS, while ignoring my symptoms and not helping me cope. Had I known what I had immediately, I might have recovered in that first year.
ME/CFS is a multi-system illness triggered by a stressor (virus, infection, accident, emotional trauma, mold, anemia, hormone changes, etc.). After this, the body fails to return to normal; it gets “stuck” in disfunction. There is no cure and only 5% of people recover fully. The best chance of recovery is in the first 6-12 months, with extreme rest. But many medical providers still suggest Graded Exercise Treatment (GET), despite consistent evidence that this is the fastest way to become permanently worse. I fell into this trap on my own.
I likely had 2 brushes with “mild” ME/CFS at ages 10 and 31, from which I recovered. I don’t know the original trigger (mold, virus, stress?), but my permanent ME/CFS followed multiple stresses: perimenopause, 4 years of isolation from leaving MN, 2 spouse deployments, undiagnosed fibroids/ anemia, and insomnia (from hormones and dysautonomia.) I had general decline in my early 40s that sped up in 2018.
On Jan. 14, 2019, age 44 (3 weeks before my debut book launch), I tried to exercise until I felt “funny.” I stopped to video chat with Tara. Within minutes, I was so weak I could hardly speak. I worried it was a stroke. From Turkey, she arranged a ride to the doctor. Just before our move to Italy, I traveled to MN and was “lucky” that my 10th doctor recognized ME/CFS in July—that’s VERY fast. But it wasn’t fast enough. I didn’t understand the danger of exercise. After arriving in Italy in August, I took long walks to try to regulate my sleep after jet lag. Within two weeks, I’d become severe—mostly lying down, unable to leave home.
Photo by C. S. Wild 2021, Sacile, Italy – Nighttime window with a reflection/ silhouette of a figure with hair in a loose bun, lamp and dressers from a living room, looking out on fading sunset, silhouette of trees and a barn. The moon looks like a small jewel or tear on the figure’s face.
What does ME/CFS “do”?
– The aerobic energy system breaks, sometimes the anaerobic system
– The body can’t recover from activity/ stress—physical, mental, emotional, or sensory (heat, smells, noise, etc.). Once something triggers exertion (reading too long, insomnia, an argument, getting hot, prepping food, laughing at a movie), the chain reaction of symptoms starts and the body doesn’t recover normally, sometimes for days, months or years.
– Research suggests that ME/CFS involves:
neuro-inflammation
inflammation
immune disfunction
blood flow problems
oxidative stress (lack of oxygen in cells/ brain)
poor autophagy (body doesn’t clean up dead cells)
disrupted glymphatic system (e.g. lymph and toxins back up in the brain)
hormone disruption
body systems stop communicating effectively
Most people with ME/CFS also have some type(s) of dysautonomia: disruption of systems that control autonomic functions, such as digestion, circulation, temperature regulation, rest and stress responses, etc. This can lead to many problems: GI issues, fainting, headaches, sweating or not sweating, insomnia, being stuck in “fight or flight,” extreme fatigue, brain fog and more. Dysautonomia doesn’t have a cure, but can be improved via lifestyle and medications. Treating and managing this has helped me significantly.
ME/CFS is distinguished from other illnesses by Post Exertional Malaise (PEM). Any stress or activity beyond one’s limits (which are low) triggers a chain reaction of worsened symptoms, often after a delay of 2-5-days. A week after a big exertion, I’m usually not recovered but just hitting my worst symptoms. Sometimes I feel *better* the day(s) after overexertion (riding that stress hormone wave, baby). Trouble hits later. After getting COVID in 2022, I felt amazingly well for a week. Then…I experienced the worst two years of my illness to date. I couldn’t make a 5-minute phone call without symptoms for days. PEM is tricky with that delay. And the illness in general can be very isolating. For me, loneliness is the worst part.
ME/CFS is very individual and also dynamic–always changing. What I can safely do at night could wreck me in the morning. Winter and summer are worse. New medications, supplements or treatments change my body’s “rules,” especially at first. My ability is never the same two days in a row—which makes pacing utterly confusing, even with a monitoring device (Visible app) to help track my exertion. Even when I CAN do something once, I need to protect myself against getting worse. Triggering major PEM runs the risk of lowering one’s baseline long-term. Life with ME/CFS is about constant restraint.
Even so, PEM can’t always be avoided. You need that medical appointment. Sometimes, I overdo it making the bed. Showering means 1 night of insomnia, 2 days of recovery—but eventually you have to bathe. Sometimes, I choose PEM in order to talk to loved ones. What is life without connection? So, everything is about choosing how to spend the tiny bit of ability you have in a day. And choosing wisely ise harder when wired-tired or groggy-foggy.
August 2025, in a school hallway. I’m in a red electric chair, in a floral dress, with my head thrown back in laughter, between two smiling/ talking friends, whom I’d just seen in a play. This was my first public event in seven years. So happy!
What is PEM like? It depends on the person and the moment.
I’m lucky. Some people have much more acute symptoms. Mine range from annoying to overwhelming. Most symptoms are hard to describe. When overextended, my cells feel like they straining and hurting as I move. I might feel like I am in overdrive, skin burning, body shaky, sleep and clear thinking elusive–I might write endless rambling words while wired-tired. Sometimes I feel trapped, drowning in a sea of heavy fatigue and fog. I can’t read, think, communicate easily. I feel like I’m talking to my wife through 3 feet of fogged glass, trying to focus my thoughts, which hurts with the strain. Someone online said it can feel like being filled with angry bees inside. Fatigue can hurt, feel urgent, like an emergency. Sometimes I feel totally fine. Especially when I spend most of my day lying and calm, I feel normal, peaceful, and joyful. As long as I don’t do anything.
But when in certain stages of a “crash” my emotions become dysregulated. I feel extreme despair, like PMS x 50. This usually comes with the kind of fog when I can’t distract myself with reading or writing. This is my hardest symptom (except for rare migraines)
What is my ability like? Depends…
I’m still mostly at home. I generally don’t drive. Texting and fine motor movements are harder. The last few years, I’ve only finished 3-4 long-form books a year (this one is sad). At my worst in Italy, I went 3 years without talking to a friend live or face-to-face, except for 2 or 3 very short phone calls. That level of loneliness is unbearable. Now, with more symptoms better managed, I generally feel better than those years—though it depends. I’m freer to sit up (reclined) and move around the house. I talk more! I had a few amazing weeks in June 2026 when I started leaving the house and going to family/ friend events. I helped arrange our new MN home. But then I crashed hard for 2-3 months.
Our ginger doggos on a moving blanket, on a chair by the window–Bravo, a mini bernedoodle looking out, Lucy the Righteous Chiweenie looking dignified.
I don’t really understand my life. Or its direction. It has little shape beyond the energy patterns of a day and season. Grief wanders through my rooms. In the early years, I felt like a ghost, surrounded by the artifacts of my Before Life. Also, there are still moments of connection, when the kids in our family process their lives and wonderings. There’s a precious talk with a friend who survived cancer. Music that makes the hair on my arms listen. The dogs chasing each other with full abandon. Sometimes Tara laughs till she can’t breathe. Or the light hits the ivy on the wooden fence and it glows plum-red around the small rustling birds. Those moments feel like life. Still. Even though, right now, my entire day is devoted to planning my survival, arranging help and insurance and food…I’m here. Still. Even when invisible. Here.
Red Mexican cow creamer posed on a lighted window sill as if sniffing golden mums.
![6. Top banner with covers of picture books. Footer, pink to yellow with black text: "Love can still win! [heart] Charlotte xoxo" A soft heart frames the word "love." The center image is of the Supreme Court building at twilight, with light inside the building, rainbow and stars above it, with colorful characters from all the books on the steps. A joyful scene.](https://charlotteswild.com/wp-content/uploads/6-240x300.png)
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