The unworried well

thoughts on loving people with chronic illness

How have you shown up for the chronically ill people in your life?

It may be a question you have never thought of. (And if you’re thinking, are there any chronically ill people in my life?—the answer is YES. An estimated 133 million Americans suffer from at least one chronic illness, 15 million more than did a decade ago.) Or one that plagues you subconsciously. For me, it has been a lifelong and infinitely complex question, one I have at times leaned way into and at times avoided out of guilt and helplessness.

I’m leaning in right now, having just read Meghan O’Rourke The Invisible Kingdom and Ross Douthat’s The Deep Places back-to-back. Both are memoirs about Lyme disease, specifically, and chronic illness, more generally. Meghan is a progressive feminist and a poet (look out for a Friday 5 with her soon). Ross is a conservative, religious, columnist for The New York Times. So there were a lot of telling differences about the ways in which they wrote about their own pain and the larger context within which they found themselves. Despite the fact that they have ultimately been diagnosed with the same illness and are of the same generation and social class, their books are fascinatingly different.

However, this one quotation appeared in both of their books, and interestingly, it is the one that took my breath away.

“Pain is always new to the sufferer, but loses its originality for those around him. Everyone will get used to it except me.”

-Alphonse Daudet, In the Land of Pain

This is French novelist Alphonse Daudet. What a beard huh?

My family of origin has been deeply impacted by chronic illness. My dad is a chronic migraine sufferer, and both my mom and my big brother have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Despite having gotten migraines off and on through out my adult life, I otherwise have very little insight into what it is like to be in their bodies, in their minds, in this medical system which so catastrophically fails people with chronic, complex illnesses.

I learned so much from these books about the immune system, personalized medicine, gut health, and the wild west of treatment experimentation and online communities. O’Rourke was particularly skilled at moving between the details of her intimate pain and the bigger socio-economic picture. She writes:

“To have a poorly understood disease is to be brought up against every flaw in the U.S. health care system; to collide with the structural problems of a late-capitalist society that values productivity more than health; and to confront the philosophical problem of conveying an experience that lacks an acceptable framework.”

It’s cognitively maddening—that we have a modern medical system designed around the least humane incentives, and doctors trained to be right and fix, rather than the far more apt capacities for not knowing and investigating.

But what I found most sad and challenging to penetrate, even with the huge effort of these two skilled researchers and writers, was the corporeal experience of chronic illness. In an interview, O’Rourke says that a listener might imagine the worst hour of the worst hangover you’ve ever had, and then imagine that for days, weeks, months, even years. That helps me some. I have had my share of hangovers, no doubt. I had a pretty gnarly first trimester of pregnancy with my second kid, too. I remember the seemingly endless nausea and exhaustion, and the pressure to perform as if it wasn’t so bad.

I was actively trying not to throw up on stage when I gave this TED talk. Not out of nerves, but first trimester nausea.

But ultimately I know that a few months of pregnancy are ultimately nothing compared to the years that those I love have suffered. And no, I don’t think I have to have had a chronic illness in my own body in order to be compassionate towards those that have, that do, but there is a gap here that holds so much meaning. So much humanity. I’ve been thinking about it a lot.

Many of us are essentially acting as proxies for the medical system when it comes to those with chronic illness in our lives. I know I have. I have listened for the coherence of the illness narrative and found it confusing; rather than concluding that this is a reflection of the complexity and changeability of chronic illness, I have wondered about the narrator’s reliability. O’Rourke writes:

“To become chronically ill is not only to have a disease that you have to manage, but to have a new story about yourself, a story that many people refuse to hear—because it is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need.”

As someone who loves nothing more than a well constructed story, the messiness and unpredictability of chronic illnesses has left me baffled at many moments.

I have also sometimes rolled my eyes at my mom’s willingness to learn about and even experiment with alternative treatments, things that I—in my healthy body, in my skeptical journalist mind—see as strange or implausible.

I have tried to fix. Lordy have I tried to fix.

Why?

I think there are a number of reasons, but one of the biggest is just how hard it is for a person who is well to imagine—truly, with depth and stamina—what it is like to be chronically ill. The pain of even those we love the very most, in Daudet’s word, loses its “originality” for us. Their suffering is an idea in our minds, not an endless punch in our guts.

(Strangely, I wonder if this is the same lack of corporeal imagination we face around climate change. Our planet is chronically ill, but until the skies turn red with smoke, it is hard for us to remember this in our bodies. We book another plane ticket or click buy now on Amazon, with only the flimsy dissonance in our minds to override.)

There are other reasons I have failed to show up as I would have liked to for those I love. I have to admit that even reading about chronic illness, or watching this powerful documentary about it, brings up superstitious fear in me. I worry that somehow, by getting close to all of this, by spending time contemplating and imagining chronic illness, I will invite it into my own body. (I know this is silly, but when you are as surrounded as I am, and genetically predisposed to boot, things can get pretty irrational.)

I also just don’t want to spend time thinking about pain that I can’t fix in people I love. It breaks my heart and makes me feel powerless. Which on some level, is what the doctors who discount women’s and people of color’s pain and send patients out of their offices with a debilitating sense of having been misunderstood, do, too. In our resistance to sadness and/or admitting our own limitations, we further compound the isolation and pain of people who are already dealing with so much.

There is a concept that O’Rourke introduced readers to in her book: the worried well. The worried well are people who, in doctor’s estimation, are in relatively good health but believe themselves to be ill. In other words, they are psychosomatic.

I wonder if I have, in fact, been part of an “unworried well”—the half of the country who are relatively healthy and find it too hard to imagine otherwise. We are, in a sense, not psychosomatic enough. We find chronically ill people, even those we love very much, mystifying. Rather than seeing that mystification as a product of our own lack of imagination or a medical system built—not for human bodies, but profit margin—we flail. We try to fix. We roll our eyes at experimentation. We impose coherence on illness narratives. Sometimes we look away all together.

Long covid means there will be more of us with chronic illness, and therefore, more of us who love someone with chronic illness. It is estimated that 100 million people have long covid worldwide.

We are re-designing systems everywhere. Our medical system should be one of them. We are re-imagining culture everywhere. Our ideas about sickness and health should be a part of that effort. This is a moment to learn how to do better—to keep other people’s pain extraordinary.

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Are you part of the “unworried well?” What have you learned about supporting those you love with chronic illness? And do you know of any great memoirs on chronic illness by people of color?

Please teach us all in comments.