📚💡Book spotlight: "Invisible Kingdom" by Meghan O'Rourke💡📚

Let me tell you about one book on the 2022 Gold Foundation Reading List for Compassionate Clinicians

One of my favorite parts of my job at the Gold Foundation is compiling the annual Reading List for Compassionate Clinicians. This annual list features healthcare-related books — nonfiction, memoir, fiction — that help illuminate the experience of illness.

All year long, I look for candidates. I love catching titles with an editor butterfly net and investigating whether a book would be a perfect fit. (It’s a bit of an impossible task because of the thousands of books that get released each year. I sometimes stumble upon books years later and think — OH! What an incredible, important book! How did I miss this?!) Still, the final list is stocked with phenomenal reads that have come out in the past 12 months, and I walk around wanting to put the books in other people’s hands. Read this one!

(Side note: The Gold Foundation is a wonderful nonprofit that champions humanism in healthcare. Odyssey of the Body is a personal project wholly separate from my job at the Gold Foundation, but sometimes I’ll share interesting projects or events or resources I’ve run across. All opinions are my own.)

So, ta-da! The 2022 Gold Foundation Reading List for Compassionate Clinicians came out this week and features 12 books. You can read the full list here.

I wrote about one of them, The Deep Spaces: A Memoir of Illness and Discovery by Ross Douthat, in Field Notes #11: What I’m Reading in Spring 2022. The Deep Spaces is unforgettable, gripping, startling, the journey of one person’s vivid experience with Lyme Disease. Highly recommend.

Today, I want to tell you about another book on the Gold Foundation’s 2022 Summer Reading List that I keep returning to, similar and yet different than The Deep Spaces. (In fact, they are similar enough that one author interviewed the other in this podcast episode.) This book is strewn now with flags marking quotes, insights, passages I don’t want to lose: The Invisible Kingdom by Meghan O’Rourke.

My already well-worn copy of “Invisible Kingdom”

Meghan is an editor and writer, currently Editor of Yale Review, and she has been plagued with feeling terrible for a very long time. She experiences first-hand how our medical system is designed for diagnoses and standard treatments, not for mysterious, chronic, shifting, multifaceted illnesses. To figure out how to ease such vexing sickness — like long COVID — requires spacious time and patience and human understanding. It requires a detective of sorts. But that is not how the U.S. medical system is set up. There is no billing code for much of what is needed.

The Invisible Kingdom chronicles Meghan’s mounting frustrations and evolving illness in detail; it’s not a fast read with a clear arc. It might not be a book for you. But it might be. I loved it. I think it will become a classic in this realm of books on the experience of illness. And it’s more than that — it investigates the complexities behind our healthcare system and our modern posture toward perpetual, uncertain unwellness.

Invisible Kingdom contains that rare mix of fresh life observations and delicately crafted sentences that I love. I can open to almost any page and find an intriguing contemplation to turn over in my mind again.

Here are 3 thought-provoking passages, to give you a glimpse:

On how recognition of others’ suffering is a burden

This is a conversation between Meghan and her friend J, which begins with Meghan asking why it seems so hard for doctors and all of us to believe suffering we cannot name; why do we assume someone is exaggerating or faking it?

“‘Even if doctors don’t know what to do,’ I said, ‘and even if the labtests are inconclusive, why not accept the testimony of the patient? Why do we have a system that’s so quick to distrust the very people it serves?’

‘Well,’ he said, ‘recognizing your suffering puts a burden on me.’

‘But all I’m talking about is recognition. There’s no course of treatment to be done, let’s say; no medical consequence.’

‘Think about it,’ he continued. ‘Just the act of recognizing you are ill makes a claim on me, doesn’t it? I have to respond. I have to empathize. And that takes a toll on me. When you’re sitting in front of me and suffering—not you,’ he said, as if he could see that I was beginning to take his words personally, ‘but anybody—it really does make a claim on the person being asked to recognize it.’

Even something as simple as recognition is a burden, J argued, if the witness to illness is not prepared—if the witness has nothing to offer, or if he is emotionally drained.

That there is energy involved in the act of recognition was, I realized, true, and its truth was a problem for those who were ill.”

I am mesmerized by the implications of this for patients and for all of us.

What if doctors were taught to believe patients as a default? What if doctors were taught that saying “I don’t know” is OK?

Some doctors are teaching this now. (Follow Dr. Kimberly Manning on Twitter @gradydoctor to see such expertise in action.) But this mode doesn’t seem to be widepread or long in history yet.

The implication for the troubled world outside of illness is vast, too.

To not recognize a problem is to avoid a problem, the weight of the problem, the obligation of the problem, the energy drain of the act of helping with the problem.

How simple — to just not believe the problem is true. How clever. How dasterdly. How fatalistic. How immobilizing.

We all do this, I realized. Think of all the problems in the world that we hear about, the alarm bells ringing, screeching, calling us to help, and yet, deep down, we don’t believe they are actual problems.

f you haven’t had these experiences yourself, how could someone else have had it? Intellectually, it’s possible to understand, but emotionally, perhaps they do not feel like real problems. Have we made the default to not recognize?

As J said, “It really does make a claim on the person being asked to recognize it.”

How could we not be moved to action if we believed the problem was real?

Of course, then — how can we be moved to action on every problem?

Here we find ourselves paralyzed in action. There are too many problems. There seems to be no way forward.

It’s often only through our own personal experience that we are finally convinced not only that something must be done, but that we must be one of the people to do it.

(Hence, why doctors who become patients themselves seem to cross the chasm of disbelief. Hence, why I am writing this to you, too.)

When we experience something hard, dramatic, traumatic, moving — the burden of recognition is unavoidable. We felt it, so we can see it now everywhere.

On what medicine doesn’t know

Meghan writes:

“… I had felt invisible in my illness, I realized, because American culture—and American medicine within it—largely strives to downplay the fact that we still know so little about illness. A doctor friend told me that in med school he was explicitly taught never to say ‘I don’t know’ to a patient. Uncertainty was thought to open the door to lawsuits. In the place of uncertainty, Americans have catchphrases: Just do it. What doesn’t kill you makes you stronger. No wonder that as a patient I was bent on ‘an irritable reaching after fact & reason.’ The shadowland I lived in, forced against my will into what Keats called the great ‘Penetralium of mystery,’ was an uncomfortable and unsatisfying place, especially since I lived in a culture that promotes the importance of triumph over adversity—a culture that insists on recovery.

“Writing this years later, I still feel the waves of grief that rose over me when I accepted I had a chronic illness—that my life was permanently changed. The hardest part of what I was living through was accepting the uncertainty of whether I would ever know what was wrong with me. Someday, doctors would have a name for my illness. But in the meantime, I might become one of those people lost on the way to answers, treatments, cures—lost in the knowledge gap.”

This knowledge gap has long plagued sufferers of ME/Chronic Fatigue Syndrome and Lyme Disease and other autoimmune illnesses. Those with long COVID, as Meghan writes about in the closing chapters, have benefited from doctors witnessing their own colleagues suffer from this condition, and thus believing more easily that there was, in fact, a new illness here to investigate.

New centers of integrated medicine, such as Mount Sinai’s Center for Post-COVID Care in New York City, have finally begun organizing a multi-dimensional, time-heavy approach to caring for patients with such complex illnesses. But much more needs to be done.

On how the world needs to adapts

Meghan writes:

“All of this raises the question of how—or if—we will have the resources to treat everyone in need. Hospitals make money by getting more patients in the door and out again. The care that these kinds of chronic illness demand may not be high-tech, but it is time-consuming and attention intensive. Clinicians need to tailor care to patients in ways that ‘our health system is not set up for,’ as Danya McCarthy put it. (This is one of the reasons that Mount Sinai’s wait list has ballooned.) Medicine is used to a quick fix. This kind of syndrome, which can’t be treated with a pill and stubbornly resists straightforward solutions ‘is not the one doctors like treating,’ I heard from another doctor. As [David] Putrino told me, many of Mount Sinai’s post-acute COVID patients are ‘on a road to recovery. But I would not say a single one of our patients feels like they did before they got sick.’ ”

There is a lot to be done within the medical system to help people who are ill with undefined sickness.

But both books are reminders that all of us can help, as a starting point, by believing our friends, family, colleagues, neighbors when they tell us they are sick. This might not seem like much, but it can be a great deal.

None of us are immune from this bewildering place of unknown sickness.

To our journeys,

Brianne

p.s. More book recommendations:

If you love history, check out the amazing book The Facemaker by Lindsey Fitzharris.

If you love a feel-good story with a happy ending, check out Left on Tenth by Delia Ephron.

The full list of 12 books is here.