When neither medicine nor science could cure me, I became my own scientist
If you get seriously ill, you probably expect that you’ll go to a doctor, find out what’s wrong, and get some treatment. But too often, that doesn’t happen — especially if you’re a woman. Doctors don’t know what’s wrong with you or how to treat it, or worse, don’t even believe you’re really sick. Then what?
Years back, I was there: I woke up one morning and couldn’t walk. As a science writer and MIT-trained mathematician, I naturally figured medicine and science would have some answers. But when my doctor diagnosed me with chronic fatigue syndrome, that seemed to mean, “Please get out of my office. I have nothing to offer you.” Other doctors were just as useless — or worse. I began to feel like either the world was crazy or I was.
Eventually I grew so ill I often couldn’t turn over in bed. I could barely work at all, and I was all alone. About the only future I could see for myself was life in a nursing home, at 39.
I came to realize that this wasn’t just about me — millions of others were in my same position. And my beloved science was part of what was forcing us to go it alone: A piece of research that had influenced public health recommendations was massively flawed. I began writing articles standing up against bad science, bad medicine, bad policy, and bad journalism, and I discovered a power in myself even at my most powerless.
But I simply had to get better. I used every resource I had: my scientific savvy, my investigative journalism skills, my emotional intelligence, my spirituality, and even my dog, Frances. Eventually, I pursued a path I would previously have dismissed as whacko. I followed the advice of strangers I met on the internet and took extreme measures to avoid toxic mold. Almost incredibly, this worked for me.
This experience transformed my understanding of science, medicine, spirituality, and happiness itself. My memoir, Through the Shadowlands, documents my quest to bring scientific authority to misunderstood diseases by telling my own story of navigating this shadowland of illness with tenacity, resourcefulness, acceptance, and love.
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“Harrowing, raw and frequently inspiring... She writes as she has been forced to live: with great inner strength and determination.” — Washington Post
“Full of verve and curiosity... Eloquent.” — New Yorker
“Through the Shadowlands is a gift, and I am grateful that Rehmeyer trusts us with this frank, intimate look into her life.” — Scientific American
“Science journalist Rehmeyer’s deeply personal illness memoir stands out for the lucidity of her self-analysis and pragmatism about managing a life turned upside down... Rehmeyer’s frustrated but cautiously optimistic story will resonate with readers who value an intelligent, scientific approach to life but wonder what to do when there aren’t any good answers.” — Publisher's Weekly
“A hopeful memoir laced with ample doses of reality.” — June Sawyers, Booklist
“Julie Rehmeyer’s inspiring memoir of surviving the ravages of ME/CFS casts much-needed light on what it’s like to live with a poorly understood disease. Humorous, compassionate, and motivated throughout by curiosity, Through the Shadowlands will powerfully illuminate this murky realm for anyone wondering what it’s like to suffer and survive.” — Meghan O’Rourke, author of The Long Goodbye
“Only a brilliant science writer could possibly traverse the mysterious landscape of America’s most misunderstood affliction with such grace. From the politics of scientific research to the far reaches of alternative medicine; from the nitty gritty of molecules to the depths of raw emotion ― this is a riveting story that will change lives.” — Joan Borysenko, New York Times bestselling author of Minding the Body, Mending the Mind
“Julie Rehmeyer’s self-taught journey through the murky world of mycotoxins, which she shares so eloquently in this book, has helped our whole clinical team change our protocols. With the help of the expert training of the American Academy of Environmental Medicine, we are now testing and treating people with mycotoxin poisoning. It is wonderful to see people getting better!” — Nancy Klimas, Director of the Institute for Neuro Immune Medicine and Professor of Medicine at Nova Southeastern University
“Julie Rehmeyer is both a real scientist and an award-winning science writer. Her book will have the power to change lives.” — Dave Asprey, New York Times bestselling author, author of Head Strong, and producer of the film Moldy
“It is a privilege to have the singular journey through the outback of contested medicine narrated by a science journalist with the nuance, rigor, deep respectability and reporting chops of Julie Rehmeyer.” — Pamela Weintraub, author of Cure Unknown and commissioning editor at Aeon