An award-winning memoirist, journalist, poet, and editor, Meghan O’Rourke is also an excellent teacher, which is how we met. A decade ago, I took O’Rourke’s MFA poetry course at New York University; it was a wonderful experience, though my classmates and I sensed she was in quite a bit of pain. On an average day, she’d suffer debilitating fatigue, dizziness, and a sharp tingling that resembled electric shocks. Her body, she writes in her latest book, The Invisible Kingdom: Reimagining Chronic Illness, “felt like a vow that had been irrevocably broken.”
The book chronicles O’Rourke’s labyrinthine journey toward diagnosis for a mix of poorly understood autoimmune diseases, while exploring how our healthcare system routinely fails patients who “live… at the edge of medical knowledge.” Much as Susan Sontag meaningfully changed the conversation around cancer, O’Rourke is attempting to shift how we conceive of illnesses in which the body is seen as attacking itself.
From the initial outline to the final draft, O’Rourke spent nearly a decade working on this book. Then, just as she was gearing up for publication, the pandemic hit. She knew she had to revise, to account for the emergence of long COVID. “Was it a difficult revision?” I asked. “Yes,” she said, “but not for the reasons you might think.”
— Ben Purkert for Guernica
Guernica: I want to begin with an apology.
O’Rourke: Why’s that?
Guernica: When I was your student, I never realized how much you were struggling. I knew you were sick, obviously; I remember meeting for workshop in your apartment because you were too weak to take the subway. But reading your book, I saw that I really hadn’t understood the extent of all you were going through at the time.
O’Rourke: Your class was when I first realized that something was seriously wrong. At first, I thought, “Maybe I’ve just become dull?” It was impossible to focus. I’d forget basic words. I’d get an espresso during our break and think, “Okay, maybe this will wake me up.” But by the end of that semester, I could see that there was a real medical problem going on. It wasn’t just an issue with my psychology or my character, but in my body.
Guernica: Your outline draft is dated October 2014. Where were you when you wrote this?
O’Rourke: I’d just arrived at the Radcliffe Institute for Advanced Study, and I was meeting all these scientists and historians, having conversations about how we understand chronic illness. It was at that point when I said to myself, “I think this needs to be a book.” And I knew it would be a big, amorphous book, one that involved not only me telling my own personal story of getting sick but also the research I’d been doing along the way. That research was such an integral part of finding my way toward some understanding.
I’ll be honest, this is the first and only outline I’ve ever written. I never use them, usually. But I knew I couldn’t write this book without one. It needed a clear structure.
Guernica: The clarity of your book is remarkable, given that the subject matter is so complex. Not to mention that you were suffering from severe brain fog during much of the writing process. How’d you manage it?
O’Rourke: Well, it took me eight years to finish the book! So that’s one answer, I guess. But the other thing I’ll say is that, when I was at my sickest, I couldn’t write anything much longer than a sentence. Not a paragraph, and definitely not a chapter. So, in a funny way, this outline marks the new phase of my illness that I discuss in the book. I was still in treatment, but I began to have enough stamina to conceive of the project as a whole. It took me a while to get there.
I was talking about this with a student the other day, and she made a great point. Writers are always being told that you need to be at your desk every day, that you have to push through. And for writers like herself — she has several chronic illnesses — that’s just not feasible. It’s an unreasonable expectation, and an unhealthy one.
Guernica: I’m struck by the fact that, in your early draft, you set a goal for yourself of seventy thousand words.
O’Rourke: That was the number included in the proposal that the publisher accepted, so I knew I had to stay close to it. But more than anything, it was a reassuring goalpost for me. I knew I wasn’t going to write an epic, like Andrew Solomon’s The Noonday Demon or something. It wasn’t going to be one hundred and fifty thousand words. And that was important to me for other reasons as well.
Guernica: Such as?
O’Rourke: I knew I didn’t have it in me to write something of that length, but also I wanted the book to be readable for people like me. When you suffer from brain fog, it’s tough to sustain your attention for so long. That’s also why I wanted the chapters to be relatively short and digestible.
Guernica: In your outline, you’ve written “PARADOX” in all caps. What’s the big paradox, as you see it?
O’Rourke: We’re living in an era in which we medicalize everything. Even something like an ice cream headache has an official medical term. You can be diagnosed with sphenopalatine ganglioneuralgia just because you feel pain from eating a sundae too fast. But with something serious, like immune-mediated illness, it takes so much labor to have your pain recognized, let alone receive a diagnosis. It never stopped being surprising to me — how hard I had to work with doctors to make my symptoms legible to them. It was profoundly exhausting trying to convince them that the sickness wasn’t in my head, that it wasn’t psychological.
Guernica: To that point, I found your chapter “The Woman Problem” fascinating, particularly when you write: “Ironically, a handful of feminist thinkers helped solidify medicine’s belief that hard-to-identify female illnesses are often psychological in origin.” As a feminist, how did it feel to arrive at this conclusion?
O’Rourke: It was quite striking. In my research, I was reading a lot about Alice James and Charlotte Perkins Gilman, and so much of that literature would talk about their physical suffering in terms of patriarchal oppression. Rarely would I read anything that credited them as suffering from organic disease, a measurable physical disease. But spending time with Gilman’s papers at the Radcliffe library, I felt a startling familiarity as I was reading her describe her symptoms. She writes a lot about brain fog and fatigue. In addition to what she might say about the patriarchy, she’s talking about suffering from organic illness, with distinctive symptoms! And so it started to seem like there was this profound irony. In trying to rescue these nineteenth-century women from Freud’s notion that hysteria is caused by sexual desire or trauma, certain feminist thinkers were rereading their suffering in terms of patriarchal subjugation, which, of course, is a real form of subjugation. But it seemed to me that these feminists were still continuing that long tradition of not crediting women. It was replacing one form of invisibility with another. The real illness continued to go unseen and untreated by medical doctors.
Guernica: You include this quote from Atul Gawande: “For a clinician… nothing is more threatening to who you think you are than a patient with a problem you cannot solve.”
O’Rourke: Yes. And the kind of illness I’m writing about has two problems. First, it’s not easily measured in an era when Western medicine, rightly, depends on measurement to assess problems. That’s the invisibility issue. But there’s also a treatment issue. For many autoimmune diseases, there’s little to be done about them. So it’s easier to look away. Doctors aren’t trained to care for a patient who keeps coming back to their office and saying, “I’m not better.” They’re trained to provide quick fixes, often in the form of a drug, or surgery. The emphasis, as one doctor I interviewed put it to me, is on fixing, rather than caring for.
Guernica: You write, “I felt acutely the absence of a story I could tell others. Without a story, who or what would help me get better?” Do you think all sufferers from chronic illness feel this way, or is this frustration particular to you as a writer and storyteller?
O’Rourke: I think a lot of chronically ill patients feel similarly. A recurring theme in my interviews was this problem of making your experience legible to others. And the issue is that, for a lot of immune-mediated illnesses or even something like long COVID, the symptoms come and go. You have good days and bad days. And so people forget that you have an illness. They see you on a good day, and they don’t remember that you have lots of bad days too.
Guernica: You were pretty far along with the book when the pandemic hit, and yet you write about the subject of long COVID at length. What did that revision process look like?
O’Rourke: I knew I had to address long COVID. I couldn’t publish a book about chronic illness and not include it. By the same token, I was initially concerned about how to tackle the subject, because I didn’t want to shoehorn it in. But the more I learned and reported on long COVID, the more I realized that it was deeply connected to the material I already had. I spoke to my publisher, and we agreed to postpone the pub date a little so I could dive deeper. And there was another kind of revision that needed to happen too.
O’Rourke: When I started writing the book, nobody was talking about chronic illness in the news. But by the time the pandemic had hit, long COVID had prompted a different kind of conversation. So I had to change the tone in certain places, to acknowledge that the reader might already be familiar with some ideas about how the immune system responds to viral infection. That was really tricky, actually.
Guernica: Something I admire about the book is that, while it’s deeply researched, it’s also quite raw. You write candidly about the strain on your marriage and about the invasive process of receiving a fecal transplant, for instance. How did it feel to put all that out there?
O’Rourke: I felt very exposed. I still feel very exposed. I was terrified to hand the book in and have it published, and I procrastinated because of that terror. I’d written a memoir before, related to my mother’s death, so I was prepared for the vulnerability of telling my personal story. But in this book, I’m diagnosed with a variety of illnesses, including tickborne illness, all of which have an element of being contested by medical authorities. And I’m fundamentally someone who cares about science and respects medical authorities! But, as I say in the book, I find myself in a body that lives at the edge of medical knowledge.
All this to say, I know there will be blowback. There will be reviews that suggest I’m urging people to get phony diagnoses. And, of course, there’s also the problem of being a writer writing about a specialized knowledge base that isn’t my own. I do my best as a researcher and reporter. I fact-check extensively. But, inevitably, there will be ways in which I’ve misunderstood or oversimplified something. At the end of the day, I think of something the poet Catherine Barnett said to me about one tricky chapter in the book. She said something like, “Meghan, have you written it in good faith, and done your best to understand what you’re writing about?” And I realized that yes, I had. And so it’s okay if I get a few small things wrong. I’m trying to further a conversation from the perspective of a patient who is suffering.
Guernica: Your book’s epigraph is from Susan Sontag’s Illness as Metaphor, and you quote from her book extensively. Was it a model for you?
O’Rourke: Absolutely. Initially, I tried to write a chapter that was very Sontagian. But then, in revision, I realized that I’m just a very different writer than she is. Her intellectual framework is at the center of everything, and she’s very averse to talking about her own breast cancer diagnosis. She doesn’t mention her personal experience once in the book. But I felt I had to talk about my subject in a much more personal way. It was something I struggled with, actually.
Guernica: How so?
O’Rourke: I worried that I was possibly diminishing my ideas, simply by bringing in autobiography. In any case, Illness as Metaphor was deeply influential. Susan Sontag is the godmother of my book.
Guernica: I’ve got just one last question. It’s a bit of a dicey one, because —
O’Rourke: That’s okay. That’s good.
Guernica: In your book, you repeatedly emphasize that chronic illness doesn’t follow the traditional arc of most illnesses, and so you don’t want to write a book in the shape of a traditional illness narrative. And yet the last section is titled “Healing.” Are you trying to have it both ways?
O’Rourke: I’m really glad you asked, because it’s something I thought about a lot. I ended up using the word healing for the last section, but not because I mean to suggest that I myself ended up getting “better” or was “healed” in the traditional sense of the word. What I’m referring to is more of a gesture toward a kind of hopefulness for societal healing. Early on, a researcher said to me, “You know, you really have an opportunity to point the way forward, and you need to do that. You need to show people that we can actually make changes in how we treat and think about these diseases.” So that’s the work I’m trying to do there.
That said, I do spend a good portion of the last section talking about things I did that helped me, because I think that’s important too. We have to have it both ways. We have to acknowledge that the nature of chronic illness is that it doesn’t end in recovery. It’s not a restitution narrative. You don’t go from being sick to undergoing a big struggle and then being better and deeply changed. But with the right kind of social and medical support, people who live with these illnesses can have a far better experience than what they’re currently having.
In my case, every day is still a negotiation. I still suffer from various symptoms. But I improved to the point where I could more or less function. I was able to write this book, and that was a major achievement for me. I think, if anything, the narrative of my book is a quest. And it acknowledges that the quest is sometimes achieved and sometimes isn’t.
To read more interviews from our Back Draft archive, click here.