Wide Angle

Chronic Illnesses May Be the Diseases of Our Time

Positive thinking is necessary, but it isn’t enough.

A smiling white woman with long dark hair.
Meghan O’Rourke David Surowiecki

Gabfest Reads is a monthly series from the hosts of Slate’s Political Gabfest podcast. This month, Emily Bazelon talks with author Meghan O’Rourke about germ theory, biomarkers, medical mysteries, and the quest to return to health. O’Rourke chronicles a personal journey in her new book The Invisible Kingdom: Reimagining Chronic Illness. This partial transcript has been edited and condensed for clarity.

Emily Bazelon: You talk about chronic illness, especially autoimmune disorders, as a kind of disease of our time. Why do you see it that way? If cancer was the illness of 20 or 30 years ago, why do you think these kinds of chronic illnesses are emblematic of our understanding, or lack of understanding, of illness now?

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Megan O’Rourke: I contend that they’re the disease of our time in the way that tuberculosis was a kind of representative disease of the late 19th century. It was often psychologized and seen as an affliction that happened to beautiful souls, and there was a popular cultural narrative around tuberculosis in ways that illuminated things about Victorian society. These immune-mediated diseases illuminate a lot about our society and the kinds of cultural narratives and stories we tell ourselves.

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They reveal that illness is not a solitary, individual experience that we all undergo. We’re seeing this dramatically illuminated in the pandemic. It is a kind of social experience. And our immune systems, we’re learning more and more, are really responsive to environmental exposures—the food we eat, stress, and trauma—all of these things can shape and affect our immune systems.

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The idea that an infection can hit your body and should act the same way in everyone’s bodies, the way germ theory taught us, turns out to be maybe not quite right. In fact, viruses, chemicals, and other things encounter our bodies, but also encounter our genetic and personal histories and end up affecting some of us in very, very different ways, as we’re seeing with COVID. The mystery of COVID is that some 30-year-olds, before there were vaccines, would die from it, and others could be totally fine, not even notice they were sick. Still others might have a really mild case but be unable to walk up and down the stairs months afterward, because of long COVID.

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I also think these diseases are diseases of our time because they’re hard to see and hard to measure, and our medical system struggles with that. They reveal to us how uncomfortable we are with things we can’t measure, and with things that don’t resolve. The kinds of illness stories we like to tell are stories of tidy recovery, or even a spiritual dissolve that ends with death. We don’t have a kind of gripping cultural narrative or easy way to talk about those conditions that recur, and come and go, and are systemic and vague, and can’t be measured. We tend to immediately psychologize these conditions.

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Can you talk a little bit about the connection between the brain and the immune system? You talk about some experiments overseen by Dr. Ellen Langer, who’s a psychology professor at Harvard. She works on aging and illness. I was really intrigued by this work.

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I find her work so fascinating, and so challenging, too. This was, in some sense, the hardest part of the book to write. I really struggled when I was sick with this question of, “Am I somehow responsible for my own illness?” A lot of people will say to you, “Oh, it’s probably stress.” And it’s clear stress plays a role in our health, but it wasn’t until a doctor said to me, “Yeah, sure. It’s stress, but it’s likely the stress of an infection, not the stress of your everyday life. There’s some underlying stressor making it very hard for you to get by, and then all these other stresses become harder to deal with.”

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I fought for a long time against people who are like, “Well, if you just relax and meditate, you’ll be OK.” A lot of what Langer works on are studies that suggest that the mind—the brain—really does play an important role in the health of your immune system and in aging.

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In one landmark experiment she did—she calls it the Counterclockwise Study—she monitored two groups of aging men. They went to a residency, I think for a week or 10 days. One of the groups was treated as if they were 20 years younger than they were. So they arrived, they had these heavy suitcases, no one leapt to their aid. They were made to carry the suitcases up the stairs. They then played music for the men from the time when they were 20 years younger. The second group of men arrived, and they were like, “Oh, let us help you with your suitcases.” They kind of kept them in the present day.

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At the end of the week, their biomarkers were measured. The first group that had carried their own suitcases and listened to music from the past, they measured that their sight and hearing had improved. They were physically stronger and they had more energy. The other group stayed the same.

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Dr. Langer has done a number of studies like that. Another one is about people who go into the cockpit of a fighter plane, and they are told they’re pilots, and suddenly their vision gets better, because they associate fighter pilots with really good vision.

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So Dr. Langer and I talked, and I asked, “Do you think this means that you can sit down and think yourself better?” And she was wonderfully complex on that question. I think she believes that you have to live within a certain number of constraints. If you go into a barn, and you know you get hay fever, and then you’re like, “I’m not going to get hay fever. I’m not going to get hay fever,” well, you’re probably going to start sneezing. So her approach is to counsel people to find those triggers and avoid them, but simultaneously to not focus on, and in fact, to find ways to trick your brain into genuinely believing a condition of health that it may not have.

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The crux of her work is that you have to really believe the thing. You have to really inhabit it in an embodied way. You can’t just think to yourself, “OK, I’m going to try to imagine that I’m better.” You have to actually feel better in order to feel better. So there’s a kind of paradox to it, but it’s something that I think about almost daily. Dr. Langer resists the narrative of, “You can just tell yourself, ‘it’s fine,’ and it’s fine.” It’s a lot more complicated than that. It takes a lot more work than that.

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But it does involve a certain level of denial …

Totally! And it gets you very close to the famous Dr. David Spiegel study in the 1970s that found patients with breast cancer who had positive thinking had better outcomes. Well, no one has ever replicated that study, including David Spiegel himself!

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It seems like some of the more simplistic cultural narratives we like to have, like, “what doesn’t kill you makes you stronger,” or “just do it,” are not quite right. Something is going on in the mind and body, but what it is, and how we harness it, and how we understand it, is a lot more complicated than the kind of simplistic narrative that often wants to look away from the real suffering at the core of an illness. That is part of what I’m trying to get at.

To listen to Emily Bazelon’s full interview with Megan O’Rourke, subscribe to the Slate Political Gabfest on Apple Podcasts, or listen below.

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