Talking with Meghan O’Rourke—the accomplished poet and editor-in-chief of The Yale Review—about her new book was a rare and meaningful opportunity for a substantive personal and professional conversation about a subject that impacts every aspect of my day-to-day life. Deciding how to write an introduction for this interview presented the real challenge: how much of my own experiences could I, should I, include?
Yet, that’s the struggle that millions of people around the world have: what to share with employers, friends and even family about a subject that isn’t easily definable, even within the medical complex. Not to mention the fear and anxiety that such revelations will alter how they are viewed in their communities. O’Rourke’s terrific and timely The Invisible Kingdom: Reimagining Chronic Illness , comprehensively investigates chronic illness through a variety of lenses—medical, environmental, economic and societal—in a way that will be consequential for science, and equally important, will make many individuals finally feel seen and validated.
According to the National Institutes of Health, autoimmune illness—an unfortunate catch-all phrase for over 80 sub-disorders—impacts more than 24 million people, a figure that is surely below the actual number of those affected. The need for O’Rourke’s robust examination underscores how many are forced to become their own investigators, within a medical complex that is often unwilling or unable to effectively respond to or treat the nuances of this spectrum of disorders. Especially in an era where diagnostic-oriented science is more emphasized than “healing-oriented” perspectives, until recently, there hasn’t been enough research into these illnesses, but that is changing, especially with the ramifications of the pandemic.
O’Rourke’s insightful work is especially critical as we consider what may be next for the millions who already suffer from poorly-understood and debilitating illnesses, let alone those who are already affected in the aftermath of COVID-19 illnesses. Long-haul COVID-19 shares a constellation of symptoms—including a pervasive fatigue; joint and muscle pain; memory, concentration and sleep problems, and more—that are also the hallmarks of other infection-associated diseases such as Lyme disease, fibromyalgia and ME/chronic fatigue syndrome, and other illnesses.
Much like the book, our conversation was an engrossing blend of personal narrative and medical journalism, reflecting O’Rourke’s talent for expressing complicated concepts and situations in an absorbing and compelling fashion.
This interview has been edited and condensed for clarity.
Meghan, this is such a complex, multi-faceted and necessary work. I felt that on one level, you began it as a way to create a narrative of your illness, which was mysterious to you and the medical community. Would you talk about the origins of The Invisible Kingdom?
I first began writing about the topic in January 2013, with the hope of understanding what was going on with this relapsing and remitting illness I seemed to have. I had been sick for years and was on a rollercoaster of strange symptoms, without a diagnosis. By 2013, I was starting to get some answers. So I think the first impulse was to try to capture this acknowledgment that I was actually sick—finally having the recognition that this was real after years of wondering. That early writing became a piece in The New Yorker called “What’s Wrong With Me,” about having an autoimmune disease. And that came out in the summer of 2013.
It quickly became clear to me that I needed to keep writing. That essay had expressed something important about the murky struggle and uncertainty that I lived with, but it really hadn’t encapsulated the “all” of it. Also, I was still very sick, and I still didn’t know exactly what was wrong with me. I was struggling on a day-to-day basis with how to live inside my body and also how to live inside my body around others. It took extreme effort to get through the day, and others’ almost complete lack of awareness of that effort—the invisible nature of it—was mystifying.
Once you knew you were going to create a longer work out of this, what did you imagine it would be? A memoir? A journalistic research project? Did it take on a life of its own? Let me say that for me, it feels like an ongoing, living investigation.
From the beginning, I knew the book I wanted to write braided memoir and research. And that’s part of what made it take so long. After I’d written the first chapter, which is more or less The New Yorker piece, there was a long period during which I read a vast number of books and articles for research purposes. The reason I needed it to be this braided memoir/medical journalism hybrid was related to my experience of illness, which involved going to many different specialists and saying, “Something’s really wrong that I don’t understand. It comes and goes, here’s what it looks like.” They would run labs and say, “You look okay, you’re a little anemic, but you seem fine. Maybe just a little anxious, right?” This lack of recognition from the medical community left me with a lot of questions: How could I feel so sick yet lack a diagnosis, in our hyper-diagnostic age, where you can get diagnosed with so many different conditions? What made my illness so invisible to the medical system—what were the social, historical, and medical reasons my testimony was discounted? The book sets out to answer those questions.
For as much research as the book contains, though, there’s also this feeling, as you’ve intimated, that I will always be writing about this in some way.
One of the deeply-felt emotions around chronic, undiagnosed illness is that one wants to be recognized and heard, yet equally doesn’t want their whole life to be defined by it, and you explore that aspect with perfect pitch. With medical—and social recognition—and finally having a diagnosis (diagnoses), as well as all you’ve discovered about yourself, how has the process of creating this book changed your experience of yourself and your environment?
You’re making me think of something that I hadn’t thought about. When I was first sick, what I craved was nonspecific and capacious recognition from everyone. I wanted the world to see my suffering and acknowledge it. But today the way I think about recognition has changed: I don’t crave recognition from everyone the way I used to, mostly because I now have a more granular and dimensional understanding of what’s wrong with me and am more comfortable making the decisions that support me and my health. In other words, the need for recognition is itself a response to one’s own uncertainty, and getting just a little recognition from doctors and friends or colleagues can radically change what you think you need from everyone else. I realized the other day that I can now be very generous about some people’s total lack of recognition about what I go through, because I have my own understanding of what’s happening.
But I really needed recognition from the medical community to get to this place. That piece of it was actually quite important for various reasons.
In addition to your experience as a journalist and your editorial oversight of the great The Yale Review, you’re a celebrated poet (I would have known that you’re a poet from the preface alone). How did and do these genres and literary responsibilities impact you as an individual, as well as on your deep dive into this subject?
My work as a poet helped shape this book. I didn’t want it to be merely a work of reportage; I wanted to convey the lived experience, the sense of searching for language to contain the murk and the mess. That all had to be there. So I knew from the beginning that it would be both of those things. What made the book really challenging to write was having to put all those registers and discourses together in a way that didn’t feel disjointed. Figuring out how to make the pivots from the lyrical moments of description to the very technical medical science sections took a long time.
There’s also an irony of being a practiced and talented writer, and dealing with the linguistic repercussions of many autoimmune illnesses, such as recall and brain fog. I find the latter a frustrating and not-well-understood phenomenon unless one has experienced it. How does language figuratively fall short in describing these sly symptoms as well as literally, vis a vis having the wherewithal to locate the right word in the first place?
That’s the very point, isn’t it? That we need a kind of capacious category that will cover so many different offshoots of “autoimmune illness” and chronicity. I think—I hope—the book speaks to the people who suffer chronic pain or other kinds of chronic conditions that are poorly understood as lived experiences. But the other language problem, which you just touched on, is that we refer to some of the key symptoms of such illnesses with words or phrases that are completely subjective in experience. “Brain fog” and “fatigue” are two important examples, and they’re some of the most challenging symptoms to cope with.
One of the big struggles in writing the book was determining what was I going to call this category of disease, because there is no name for it. In some ways, doctors don’t think of the broader group of diseases I talk about as a category, but I was trying to carve it out as such.
With my own situation, I know what it’s like to be forced to stop everything one does and how one conceives of oneself, almost on a dime. Did the experience of the pandemic feel different to you, because you had already experienced something unknown and world-altering? Do you feel you were more prepared, in a sense?
I did, funnily enough. First of all, because I happened to be writing a book about infection-associated conditions, I was in touch with many researchers and some virologists, some of whom signaled to me that they were concerned. As early as January 2020, I was waiting for the pandemic to happen. So when we first went into lockdown, I actually felt a certain amount of relief. But then too, people who develop chronic illnesses, or are born with one, have practice adjusting to realities we don’t like and thinking about the trade-offs. And this turned out to be really important to getting through the pandemic.
Speaking of COVID-19, one relatively new area of research is around those with long-haul COVID-19, which perhaps-not-so-coincidentally has symptoms quite similar to those of a host of autoimmune illnesses.
Yes, many more researchers are interested in the way that various infections, including Epstein-Barr virus, may create ongoing symptoms in a subset of people now, with the advent of long COVID-19. I do feel there is some hope in this area. I’m not saying “here comes research on COVID-19 and now everything’s better.” But certainly there is some optimism—and new funding, potentially, and a host of researchers who are taking an open-minded approach to the dimensional ways that infections can interact with an individual’s biology and have vastly different effects on them in the long-term.
That said, I’m sure many of those affected feel invisible, and I want to honor that. A lot has to change in medical culture for real change to come, with one key being that medical science needs to listen to patients more.
That’s such a critical point: I definitely feel that the medical complex—and related economics of such, which matters a lot if there’s going to be change—as a whole hasn’t been as committed to locating the source or better treatment for these classes of illness (see, I can’t define it easily, either!).
We’re not there yet. On a macro level, these are what I call the signature representative illnesses of our time, through which we can see quite a lot about ourselves as a culture; they are diseases which may be impacted by social policy and by changes in our environment. And so I argue here that chronic illness is not an individual problem, but a societal one, for exactly the reasons that you’re suggesting. We are behind in acquiring the tools we need to treat these conditions, as one researcher told me. And in part that may be because we think of illness as an individual problem, as you get at in your question: we talk about people with long COVID-19 being a “burden” to our healthcare system. Rather, they are, I would say, a responsibility of our health care system, right? We have all experienced this pandemic. Some of us died. Some of us got better. And some of us got stuck in the middle, purely by accident. So you’re absolutely right that as a society we have to completely rethink our economic and support structure.
Autoimmune disease is on the rise, and yet it is harder to live with than ever; in this way it is a crucial lens onto our society, revealing how unable or unwilling we are to accommodate and make room for people who can’t work in a hyper-connected, frenetic, way because they live with relapsing and remitting illnesses.
I think by contrast of my great aunt Gert, who was an artist, and who was often sick. She was kind of sickly, had a host of physical problems, and in my memories, she was almost always in bed. My grandmother once said, “Oh, she likes to be sick, she just likes attention.” (I wish she were alive to testify to her own experience.) But one thing I was struck by was that it was nonetheless taken as a kind of given that she could live this life in her room and come out when she wanted to, right? She had a kind of support that was possible in an economic era when middle-class families didn’t need to rely on two-incomes. Go back to the 19th century, and you will find the sickly maiden aunt who lives upstairs and is taken care of by her extended family.
What are the unexpected bright spots in this experience around your own chronic illness as well as the writing of the book, and what there may yet be? I’m thinking especially about the last chapter and how you ended the book so movingly: “My illness left an open window in me through which anything can climb, at any time.” Is there anything else you’d add to that now, many months past writing that?
I don’t know if there are actual bright spots in illness. But one of the ways it has changed me is in being more prepared for those realities that I don’t like. It made me more empathetic to other people in a way I wasn’t before this experience. I think many of us don’t understand others’ suffering unless we experience something similar to it. The window is an openness to all things, right? To terror, to loss, to incapacity. But it is also a window onto the expansive and surprising connections among us, and the ways that uncertainty can bring radical reappraisal with it.
The Invisible Kingdom: Reimagining Chronic Illness
By Meghan O’Rourke
Published March 1, 2022
Mandana Chaffa is founder and editor-in-chief of Nowruz Journal, a periodical of Persian arts and letters, a finalist for the Community of Literary Magazines and Presses’s Best Magazine/Debut; and an editor-at-large at Chicago Review of Books. Her writing appears in a wide array of publications and anthologies, and she serves on the board of the National Book Critics Circle and is president of The Flow Chart Foundation. Born in Tehran, Iran, she lives in New York.