The Loneliness of Having an Illness Science Doesn’t Understand

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If someone told you she had something called chronic fatigue syndrome, you might not take her very seriously. Who among us isn’t tired all the time? And yet chronic fatigue is a condition with a name that belies the very serious malady it’s meant to convey. While exhaustion is indeed part of it, the worst symptoms are often debilitating: loss of motor functions for periods of time, feeling ill after even mild exercise, drops in blood pressure, and quickening heart rate. Although as many as 2.5 million Americans could be afflicted with the illness, there is no cure for CFS, and scientists still don’t understand its cause.

In her new book, Through the Shadowlands, science journalist Julie Rehmeyer chronicles her history with CFS, including her own attempts to find a probable cause and her mental and physical struggles with the condition. She also provides readers with a picture of the community of those afflicted with CFS, and some details on the most recent research being done to study the illness.

Recently, Science of Us spoke with Rehmeyer about her experience with the condition, including her thoughts on its name, the time she trained her pup to be her a service dog, and how she’s dealing with the illness today. What follows is a lightly edited and condensed version of our conversation.

Do you think CFS is a good name for your medical condition?
It’s a terrible name! Completely terrible name! It’s trivializing and it’s terribly degrading, because chronic fatigue syndrome sounds like “chronically fatigued,” right? You’re tired all the time. In fact, these two things are really different. You can be chronically fatigued without having chronic fatigue syndrome. Chronic fatigue is certainly a part of it, but it’s not the primary thing for many patients.

Myalgic encephalomyelitis is actually an older name for this illness. It’s a much better name in many ways, and it’s one that the patient community has been embracing more and more over time — at least in terms of the online community. I did not go all the way calling it myalgic encephalomyelitis because scientists, at this point, have mostly rejected that, because myalgic encephalomyelitis means muscle pain and inflammation of the brain and spinal cord, and there’s certainly not evidence that inflammation of the brain and spinal cord is the center of the illness. My feeling was, I don’t think we’re going to be able to solve this name in a long-term way, so I went with this quirky compromise in the book — [ME/CFS] — partly because it’s one that I can get my journalism editors to go along with.

But it’s not a great solution. It’s just, right now, we don’t really have a good name for this illness and I think we’re gonna have to get some greater knowledge of what’s going on physiologically before we can come up with a name that everybody will agree on.

Do you think the name has had an impact on the awareness of ME/CFS? 
Enormously! Absolutely huge! I think it’s had a huge impact. To say I’ve been completely disabled by chronic fatigue syndrome, it sounds so bizarre. Chronic fatigue syndrome, it just sounds like you’re worn down. That’s so much the perception. For me at this point, fatigue does not play a significant role in my illness, and I’m kind of amazed by how often, even friends of mine who know my situations pretty well, will say, “So, how’s your energy been? You’ve been feeling tired?” It’s startling for me every time. “Wait, what does that have to do with me?”

Did the name make it harder for your friends or family to accept that something was seriously wrong with you?
I think it had a huge impact. In a weird way, it’s had a huge impact on me. I could feel the corrosiveness of that on myself. It felt like I wasn’t really fully, legitimately sick, and feeling the way that operated in my own head, I knew that had to be going on for my friends too.

But by and large, I was pretty lucky. I didn’t encounter great skepticism from friends and family. But I definitely felt the sense if I had an illness that had a proper name, I think it would’ve brought about an overall light shift for both me and the people I was closest too. Like, “Whoa, you’re sick. You got this serious illness. That’s a life-changing thing you have to deal with.” Instead it was more like, just this weird little thing. Having a weird little thing is really different from having a disabling, chronic illness.

For you, when did you notice that you had ME/CFS? When did the symptoms start appearing?
The symptoms started back in 1999, so a long time ago. At the time I was building my own straw-bale house while I was working full time as a professor. And my husband-at-the-time was going through a very serious illness. It was an extraordinarily stressful period. I was working way, way, way too hard. And, so, initially I figured, “Okay, well I am utterly exhausted, all the time, but who wouldn’t be?” So, I was inclined to figure I need to finish my house, I need to get my life in order, and I’ll be fine.

But the degree of what I was feeling did not really seem normal. I found myself walking down a hallway, trailing my hand along the wall because I had a vague fear that I was gonna pass out. But still, I figured, it would be fine. I did finish the house and I did get my life in order, and my symptoms got somewhat better, but something was still not quite right. In particular, I couldn’t exercise the way I used to. I had always loved exercise. Before I started building I ran a marathon. I had been on a search-and-rescue team rescuing lost hikers in the wilderness.

But after I started getting sick, exercise did not feel good anymore. If I pushed myself, then I felt terrible the next day. And I didn’t really know what to make of that. In retrospect, that symptom is the really alarming one. Far more than the fatigue I was feeling. Because problems with exercise are really the hallmark of chronic fatigue syndrome.

When did you start having problems with exercising?
I think it was really around the same time I was exerting myself all the time, and so I felt terrible all the time. And I didn’t notice that exercise was the big trigger until after I finished my house and life calmed down a bit.

Still, I thought, “Okay, this is weird but I don’t know of any illness that just involves problems with exercise. That sounds pretty bizarre. I don’t know. It’ll go away and everything will be fine.”

And then in late 2006, I woke up one morning and I could barely walk. It was very sudden. Very shocking. At the time, I was doing an internship in Washington, D.C., for Science Writing and didn’t have my car, and lived half a mile from the Metro and grocery store, and there was no way I could walk that half-mile. Absolutely no way I could do it. That was the moment I was finally like, “Okay, I have to figure out what this is.”

How did you find the ME/CFS community?
Fairly quickly, I found this online forum called Phoenix Rising. I think I did something fairly brilliant like Googled “chronic fatigue forum.” It’s quite active, but I was actually put off, and frankly scared, of the ME/CFS community early on. When I read posts on the forum, I felt like, “These people aren’t like me.” A lot of people were a lot sicker than I was, and a lot of people were trying treatments that I thought were just totally unscientific and cracked. There was a level of desperation that scared the hell out of me.

In retrospect, I was projecting my own fright onto them. I was incapable at that point of really entering their experience enough to understand why they would look at the world the way they did. By the time I got as desperate as they were, their views on the world started making a lot more sense to me.

When people have something wrong with them, normally they just go to the doctor and the doctor tells them what’s wrong. But for you and ME/CFS, you couldn’t do that. What’s it like having a medical condition that doctors don’t know anything about?
Yeah, it was pretty terrifying. After I woke up that morning in D.C. and couldn’t walk, I was like, “Okay, I gotta find a doctor here who can tell me what’s wrong.” So, I went to a neurologist because it wasn’t that I was tired — it really seemed like the nerve signals were not making it from my head to my legs. So, I went to a neurologist, and he saw me stagger in, and he did a few very crude tests, and then he diagnosed me with chronic fatigue syndrome, and I thought, “Fatigue? Did you not notice that I can’t walk, buddy?”

For him, it was pretty clear the diagnosis meant, “Please get out of my office.” He had no tests, no treatments, no other doctors to recommend. Nothing. And, you know, the irony is he actually did have the right diagnosis. Although I think he mostly got lucky because he didn’t even ask the primary questions one should ask. He didn’t ask if I had problems exercising. He didn’t ask if I had problems with blood-flow regulation.

So I was on my own, and turned to Dr. Google and learned a few basics about the illness. I found one doctor in the Bay Area who billed himself as a chronic fatigue syndrome specialist. I went to see him and was quite alarmed by the brochure he had selling acai berry juice and claiming miraculous effects for this and that kind of thing. At the same time, he seemed to have some reasonable, science-based suggestions to make. They ended up not doing anything for me but in retrospect they were not crazy suggestions; they were things that do help a fraction of people.

It was a frightening thing for me because I feel like I had fallen off the edge of the Earth. The only people who had anything to offer at all were these semi-quack people. To be that sick, and feel like there’s nothing solid to turn to — it’s terrifying.

What was a typical episode like for you, if there is such a thing as a typical episode for you, before you started getting better?
At the very worst, I couldn’t turn over in bed. That feeling is pretty darn scary, particularly because I was all alone, often, when I was dealing with that. Really, I just had to wait. I just had to lie there and wait and hope that it would end. It always did within a few hours. But it could also be while I was out doing my grocery shopping, and suddenly my leg would start to drag, and within a minute, I wouldn’t be able to move at all. So there was a constant vulnerability knowing that anytime, I could just find myself paralyzed.

So, at this point in your life, your condition is getting worse, and you start to turn to doing anything to improve your situation, including trying to train your dog as a service pup. Can you describe what that was like, specifically?
At this point, I was living by myself, and in a pretty dire situation. I had run out, pretty much, of medical treatments, and was just trying to figure out, “Okay, how am I going to make this work.” And I had this idea that I could train my dog as service dog.

The initial image that came to my mind was that I could have a foldable scooter, so basically a skateboard with a handle that folded down and breaks. And she could carry it on her back, and then when I got paralyzed, she could pull me on this scooter and get me to safety. I loved this idea, partly because it’s so ludicrous and just on the edge of plausibility. It made me feel like me. It was a creative response to the illness. It made me feel alive in response to this.

I went online and I found amazing online resources to train your own service dog. I also worked with a trainer who worked via Skype and started training her. It turned out to be the most fabulous project, and fit surprisingly well with my capabilities at the time. Because of the approach that I used, it’s important to only do short bursts of training — just because her attention span isn’t all that long — that fit with my short bursts of energy. It ended up being just a really, really wonderful thing.

Training your dog, although funny, wasn’t the most desperate thing you did, but it was along the continuum of, “I gotta try something.” Leading into that, I want to talk about Death Valley. You said throughout the book that you were reborn on your trip to Death Valley. What did it do for you?
During this period when I was at my sickest and out of reasonable medical treatments, and living alone and pretty desperate, I managed to write a story for Slate about chronic fatigue syndrome. In writing that article, I came out as a patient for the first time, publicly. The result of that was that I got contacted by these patients who said they had been sicker than I was and had had these kind of spectacular improvements through taking extreme measures to avoid mold.

I thought this sounded totally cracked. I didn’t know of any science that suggested mold could cause the kind of symptoms that I experienced. I didn’t know that much, but the idea that it could cause something like asthma, that sounded plausible, but something like ME/CFS just didn’t seem possible to me at all.

Also, at that point, I was still really wary of the patient community as a whole. A little less than I had been, but still pretty worried, and I really, really disliked what I saw as this unscientific orientation of the patient community. I thought, “Okay, these are people have deluded themselves. They have most likely improved for some totally unrelated reason and they have ascribed it to mold. And they believe that they have found a magic power solution for everybody.”

But, at the same time, the thing that really got me was a blog post by this young man who had followed this theory and spent two months living in a cargo trailer in the desert. And he posted pictures of himself running. Running! And talked about how he could lift weights again. And that was mind-blowing. Just mind-blowing for me. And you don’t hear stories like that in the ME/CFS community. It was a really outlier story.

So, that really got my attention. And I also felt, look, the fact is, “I’m out of reasonable ideas.” If I’m going to try something, it’s not gonna be reasonable at this point. So that’s not reason to dismiss it. So, I started talking to advocates of the mold theory, also known as Moldies.

On the one hand, they were actually a really impressive group of people. There was a Harvard-trained lawyer, an MIT-trained computer scientist, an art history professor. These were really smart, impressive folks and as they talked about their theories, they really made as much sense as anything I had heard before. The bad side was that they wandered off into things that really seemed highly, highly implausible to me, like the evil of vaccines or chem trails. At those moments, I felt this rush of anger at the universe. Like, “Really? I have been reduced to considering the ideas of people who talk about crap like this?” It was a challenge for me to deal with those contradictions, and that balance for me of hope and extreme skepticism that I felt.

Ultimately, I tried it because I didn’t have any better ideas. But there was another level to it, too, that goes beyond the rational weighing of pros and cons. I felt drawn to it on an intuitive level.

Their recommendation was that I spend two weeks in the desert without any of my belongings to get totally clear of mold. That idea, of going and having an adventure, even while I was that sick — again, it made me feel like me, in the same way that training Frances as a service dog made me feel like me. That was a big part of the draw too.

Just to be clear, it may be mold, or mold may be “mold,” a placeholder for something else.
I do use “mold” as kind of a placeholder word. When buildings are damaged by water, all kinds of things end up in the air. So, mold grows on the building materials, and then there are little mold particles in the air. There are also toxins that the mold produce. There are volatile organic compounds — the compounds that we smell. There are particulates, there are bacteria, there are bacterial toxins.

At this point there hasn’t been the research to really figure out what of that stuff is causing the impact, or whether it is those things working in combination that cause the impact. But we know mold produces neurotoxins. That is a fact. And we know that those toxins are in the air and we breathe them in. The mainstream scientific opinion is that we breathe so little of it that it couldn’t possibly cause these kinds of symptoms. Although, when you push scientists on that, they can’t really defend that position.

So, by going into Death Valley, you were able to get better because by being away from mold for a time, your body learned to “sense” mold nearby. You can avoid places heavy in mold. How did being a science writer affect this realization?
Yeah, it’s had a big impact in a lot of different ways, and the experience has also had a big impact on me as a science writer. The tools that I had a science writer were really valuable in that I could fearlessly read papers that I was completely unqualified for. I’m not expert in biology or medicine, but I felt comfortable picking up a scientific paper and digging through a lot of jargon that I didn’t really understand but getting the gist of what was going on. Or even, figuring out whether the paper was worth paying attention to or not even if I didn’t understand all the details. Unfortunately, in the case of ME/CFS, the scientific literature is not very helpful.

However, I think that scientific training and perspective turned out to be valuable and even essential in other ways. One thing is that this was actually part of what made me able to set aside my doubts to pursue these totally unscientifically validated approaches. Because I felt like, I’ve got this scientific grounding. I’m not going to lose that. I can stretch further because I know I’m rooted here. I’m not gonna topple over if I make this really big stretch.

And then, it was also really helpful in evaluating my experiences. For example, I started having really clear reactions to mold and I’d gotten dramatically better by avoiding it, but I still had this niggling worry in the back of my mind that perhaps I had made up a story to explain this whole experience that was just wrong. It was the same kind of skepticism that I felt hearing these stories from the Moldies in the first place. “Yeah, okay, it’s a nice story, but what if it’s just wrong?” And so, I actually performed my own placebo control, double-blinded trial of my ability to detect mold by using two, identical packages of washcloths. I had a friend who flipped a coin and chose either a contaminated or an uncontaminated washcloth, and he handed it to [my husband] John who did not know — that was the double-blinding part. Neither John nor I knew whether it was a contaminated or uncontaminated wash cloth. And he brought it to me, and I held it to my nose and waited to see if it could cripple me. I had correctly identified 10 out of 12 washcloths correctly. Had I been purely guessing, I would have only had a 2 percent chance of guess that amount correctly. guessing.

That was a really nice confirmation of my explanation for my experience that left me feeling on firmer scientific ground.

How are you doing now? Do you still have episodes? Where is it at today?
It’s a slightly complicated answer to that question. A year and a half ago, I was great. I was pretty much able to go into almost any building for short periods, all but the very worst building. Months had gone by without a paralysis episode. If you hadn’t known my history, you wouldn’t have known anything was at all wrong. I was exercising a lot, really doing very, very well.

And then I got a series of really terrible exposures. My next-door neighbor’s house flooded and made an unfortunate decision about how to deal with that. Which led to me getting exposed over and over from their remediation, which blew across my land and house over and over and over. Repeated exposures increase my reactivity. That was really devastating to me. I’m still dealing with the effects of that. I’ve been unable to live in my own house or be on my property for four months, and I’m actually living in a van.

Oh no!
Yeah, it’s been rough, and at this point overall my reactivity has been high enough that I have to be quite careful overall. Nevertheless, even now, as long as I avoid exposures, I’m fine. The other day I took a four-mile hike. Completely fine. So, I’m hopeful that things will recover. I’m actually, within the next week, going to be heading off in the van into the wilderness to give my body a really big break from exposures and try to get my reactivity down and let my body calm down.

What It’s Like to Have an Illness Science Doesn’t Understand