Journey Into Chronic Fatigue Syndrome
Julie Rehmeyer, a contributing editor of Discover, a magazine about science, technology, and the future, knew about science and medicine. But she never expected that this knowledge would become of vital importance when she was diagnosed with chronic fatigue syndrome (CFS) and had to fight not only for her health, but her life. She’s written a book about the experience, Through the Shadowlands: A Science Writer’s Odyssey Into an Illness Science Doesn’t Understand. The book, a memoir, was published in May 2017.
HealthCentral interviewed Julie about the experiences that led her to write the book in June 2017.
HealthCentral (HC): Like many other little-understood disorders, CFS is one where people struggle with being believed. Did you ever feel like you were taken less seriously in describing your disease because you were a woman?
Julie Rehmeyer: Sexism has a huge impact for ME/CFS patients — both male and female. Something like 70-85 percent of patients are women, and that’s affected public perception of it from the beginning, contributing to the way it hasn’t been taken seriously. The entire illness gets cast as a women’s disease — until recently, it was the Office of Women’s Health that was responsible for CFS at the National Institutes of Health. And, given our sexist culture, “women’s disease” often gets interpreted as “not serious,” “not real,” “not worthy.” We know that women are treated worse by our medical system in all kinds of ways: just one example is that their pain tends to be taken far less seriously than men’s. And this sexism ends up affecting both men and women with myalgic encephalomyelitis/CFS — all of us are viewed as wusses who should just man up and get over it.
I was diagnosed by a neurologist, after I woke up one morning barely able to walk. I was stunned: Sure, I’d been tired for years, and I’d wondered if I might have chronic fatigue syndrome. But this wasn’t fatigue! I couldn’t walk! Plus, he hadn’t even done any sophisticated tests: He’d only watched me stagger and pushed on my legs. I was even more stunned when the doctor had nothing to offer: no tests, no treatments, no other doctors, not even much sympathy. For him, “chronic fatigue syndrome” seemed to mean “Please get out of my office. I have nothing to offer you.” That was definitely a moment when I wondered if my sex might have something to do how I was being treated. If I’d been a man, would he have so casually tossed me into the CFS wastebasket?
HC: As a result of your illness, you had some positive things happen to you that may not have happened without your illness. What was one of the most positive things?
Julie Rehmeyer: I did indeed — though the path to get there was pretty torturous. I was pretty thoroughly disabled by the disease in 2011, often too weak to turn over in bed. I went to the top specialists in the world and had pretty much run out of medical options. I was living alone but was really too sick to take care of myself, and I had little family to turn to. I was also running out of money.
All of that made me desperate enough to try an approach I thought was probably crackpot: I followed the advice of fellow patients who said they’d had huge improvements by taking extreme measures to avoid mold. They advised me to spend two weeks in the desert with none of my own belongings to “get clear” of mold, and they predicted that once I’d done so, I’d react clearly and strongly to my own stuff — and then I’d know that it was indeed mold that was making me sick. I was on just enough of an upswing that I thought I might be able to pull it off, and I went.
The two weeks in Death Valley were an extraordinary experience for me. I felt a bit like I was going to the desert to die. I fully expected to still be breathing at the end of the trip, but I felt like I’d reached the end of the road, like for so many years, I’d worked so hard to keep up with all my responsibilities and dreams despite my illness, and I just couldn’t do it anymore. I couldn’t be a top-notch science writer and a top-notch partner and a top-notch citizen, as I’d demanded of myself all my life, while being that sick. So I had this sense of reaching the end of the road. Life as I’d known it was over, and I had no idea what lay beyond.
And indeed, while I was there, I had this incredible experience where all those imagined obligations I’d been straining under all my life suddenly vanished. It all seemed so laughable: Even when I was fully healthy, I’d strain under the weight of my own expectations of myself. No way could I do that while I was sick! But beyond that, I discovered a kind of inner spaciousness in Death Valley, as if that entire austere, barren, gorgeous expanse had traveled inside me. Suddenly, simply managing to feed myself, to sweep the sand out of my tent occasionally, to breathe in and out, qualified as success in my own eyes. Sitting in my camp chair, watching the colors in the desert change as the sun moved across the sky, felt like enough. A full life.
Since coming back from Death Valley, that inner spaciousness has remained. Whenever I find myself tied up in knots about something, I think, I died out there in the desert. This is all extra, unearned gift.
HC: My son had severe acid reflux disease when he was born. Sometimes I felt grief when I left the doctors’ offices knowing that there was not much hope with them helping us. What did you experience after you left some of your more difficult medical appointments?
Julie Rehmeyer: When I was first diagnosed by that neurologist, I figured I just needed to find a better doctor. I was skeptical that chronic fatigue syndrome was the right diagnosis, but I figured I’d start with CFS specialists anyway, just to rule it out. I went to the only CFS specialist I could find. When I got to [the] office, I found flyers for acai berry juice, which [the doctor] sold in wine bottles for $35. The brochure rhapsodized about the mysteries of the Amazon jungle where the berries grow, pointing out that darker fruits contain more healthful antioxidants and that acai berries are so dark that “they reflect no light!” He had posters on his wall showing the smooth hip of a supine young white woman, advertising an anti-cellulite treatment. I felt as though I’d fallen down the rabbit hole into some netherworld.
When I talked with him, he did actually have some treatments to offer and cited studies to support their efficacy, which gave me some hope. But as I walked out, my wallet hundreds of dollars lighter, carrying a bag full of supplements that he recommended and sold himself, I felt desperately miserable that this was the most promising approach I had available.
But that was better than the neurologist I saw at … [a] teaching hospital who suggested I might have “conversion disorder” — in other words, that my illness might be all in my head. The problem with that, for me, wasn’t so much that it was offensive — it was that it was useless. I said to him, “OK, if it’s conversion disorder, then what do I do?” And he had no answers for me. His suggestion only added a dollop of blame to the news that he had nothing to offer me.
HC: What do you want to say to others who have yet to find an answer (or at least improvement) with their chronic fatigue syndrome?
Julie Rehmeyer: First, I want to offer huge sympathy. This is a terrible, terrible illness, and it just sucks having it. Finding approaches that help takes both enormous perseverance and, frankly, simple luck.
Second, I’d encourage them to turn to the patient community. Patients have more wisdom about this illness than anyone else. Of course, skepticism is in order — it’s easy to get convinced that a treatment is helping just because you want it to be, and then to recommend it to others. Still, patients have figured out a lot about various things that may help, and learning from their experiences makes a lot of sense. I wrote an article for Slate about this, with some practical suggestions.
Third, I’d encourage them to look for ways to find richness in their lives [where] they are at the moment. Somehow, we have to both work to make things better and work to accept things as they are, and while they can feel contradictory, both things are essential. I took a great deal of solace in my land, and I found that much of the time, if I narrowed my focus to the immediate moment, I could find joy in listening to the stream burble and smelling wafts of butterscotch scent from the ponderosas and watching my dog Frances play. And at other times, the pain and misery (physical or emotional) was so overwhelming that I just had to breathe through, moment by moment, relying on my knowledge that it wouldn’t last forever.
Fourth, I just want to say: You’re not crazy. Your experience is real. You haven’t lost your citizenship in this world, as much as it may feel that way.
HC: After reading your book and following your story, I feel certain people will want to know how you are doing now (in the time that has passed since finishing your book).
Julie Rehmeyer: For a good while, I was close to 100 percent — feeling consistently good, able to exercise quite a lot, OK for limited periods in all but the worst buildings. Unfortunately, my next door neighbor’s house flooded, and they made some unfortunate decisions that resulted in my house getting fumigated with mold many, many, many times. The result is that right now, I can’t live in my own house. Also, repeated exposures like that are the exact thing that drive up my reactivity, so right now, I’m reacting badly to exposures that a year ago wouldn’t have fazed me. I’m particularly vulnerable when I’m sleeping, so for some months I’ve been living in my van, because it’s been too difficult to find a house I can sleep in.
All of that is a huge drag — but still, I have so much more control than I once did. And even now, the bottom line is that as long as I can avoid exposures, I’m fine.
And on other levels, my life is quite wonderful. My husband John continues to be an unbelievable blessing in my life. Frances continues to be her wiggly, exuberant self. And our cat Lao thinks van life is marvelous, amazingly enough. He’s an adventure cat.