More than 133 million American adults — one in two of us — suffer from a chronic condition, including autoimmune disease, fibromyalgia, digestive disorders, migraines, back pain, depression, diabetes, cancer and chronic pain. A recent study published in JAMA Internal Medicine found that those of us in our 40s, 50s and 60s are twice as likely as our parents were to suffer from debilitating chronic conditions in middle age.
I’m one of those statistics. I’ve spent much of the past decade navigating my life around health crises. Twice I’ve been paralyzed by Guillain-Barre Syndrome, an autoimmune disease similar to multiple sclerosis, but with a more sudden onset and a wider array of possible outcomes. Other diagnoses — low blood cell counts, thyroiditis and the need for a pacemaker — have also complicated my health and my life.
When my kids were younger I coped with bouts of being bedridden by turning my bed into a playground, scattered with board games, Legos and books like A Wrinkle in Time and The Lord of the Rings. One day, my son’s grade school teacher sent home a paper in which she’d circled a line he’d written: “My Mom is the most determined person I know. She’s more determined than Frodo.”
Above all I longed for a normal, ordinary life, that lovely, irreplaceable, gorgeous mess of moment-to-moment reality — to play hide-and-seek with my kids again, to bandage and kiss a skinned knee while rushing to get out the door to a meeting.
I was sure that if I could walk again, tie my kids’ shoes, drive, cook dinner and type, the joy of living would return in high definition. If I could just get back to ordinary life, it would be miracle enough.
But I was wrong. Even after I’d regained the strength to haul myself up the steps — albeit by death-gripping the rail — and drive, cook and write, I was different. Yes, I was profoundly grateful, but it still felt like a half-life. A maybe life.
One day I found myself lying down at the top of the stairs, exhausted by carrying up the laundry basket. That’s when it hit me: These should be the best years of my life. My time to enjoy my kids, who would all too soon be gone. My most productive work years. But the days were whizzing past.
Illness, I realized, had become my joy thief.
As a health science journalist, I’d written an award-winning book, The Autoimmune Epidemic, on how modern chemicals were overwhelming the human immune system, contributing to rising disease rates. I’d been working with the chronically ill for years, lecturing to groups and exchanging thousands of emails with patients. I knew how many Americans were suffering, despite having benefitted from the best that Western medicine had to offer.
Like me, their lives had been saved, but they felt robbed of joy. Continue reading