Where should illness stories begin? With honesty, since the origin of an illness may never be discovered, nor the condition resolved. Management will play a crucial lifetime role for the individual. O’Rourke writes about how things really are: not tidy, but also not without hope. Her book spoke powerfully to me. In 2010, after waking to a hurt that vandalized my spine, I experienced ambiguous and conflicting diagnoses. The weakness and deterioration in my lower extremities might be due to runaway inflammation, or it could be neurological. One surgeon wondered why I even had an appointment with him, after I had begged, pleaded, and cried to his receptionist. Highly educated doctors dislike not having answers and can become dismissive. It’s as if the medical profession views a patient’s right to seek relief and remedy of debilitating symptoms as being itself the sickness. A line from O’Rourke’s poem “Idiopathic Illness” comes to mind: “[A] disease without name, I was body gone flame.” Before I read her new book, I didn’t know that my plea was for witness and for belief in my pain.
Meghan O’Rourke spoke with me, via generous, volleying emails, to discuss her book.
Author photo by David Surowiecki.
YVONNE CONZA: “To all those looking for answers” appears on your dedication page, indicating that this is a quest narrative. Quest as in a story of challenges and struggles, contradictions and complexities, as well as shifting points of view, where one’s pursuit might ultimately lead to a different truth than anticipated. How did this quest idea open up possibilities for telling the story you wanted to tell?
MEGHAN O’ROURKE: Yes, I’m glad you touched on “contradictions and complexities.” A fact of chronic illness, for me at least, is that it brings with it contradictory and conflicting feelings. (I can do this; oh no, I can’t. I don’t want pity; but I do want empathy, at least today.) I knew from the start that this would be a kind of quest story. When I began writing this book, I was still very sick, without knowing why. I set out on a quest to understand what was going wrong — why there were so many “small” problems spilling into big ones. Strange “electric shocks” that flickered up and down my arms and legs. Fatigue so severe it was like my brain was made of wet sand. Pain deep in my joints, that roamed across my body. And so I read, researched, and met with many, many doctors, and I eventually received a handful of diagnoses, and some helpful treatment. But I am still not “better,” in the traditional sense of the word, in the sense that someone who is well might mean. I live with POTS, hypermobile Ehlers-Danlos syndrome, autoimmune thyroiditis, the effects of tick-borne illness, and more. But the strangest thing about this quest was how invisible it was to many of my friends and colleagues. During my darkest days, I felt that my experience was entirely invisible to others in ways that seemed to erase me. The loneliness of that erasure almost killed me. And that was what I most wanted to convey.
What influenced your structural decisions as you planned out the book?
My illness was messy; my body was in a state of revolt, and I had only an incoherent sense of why. I wanted to find an honest — or maybe “authentic” is the better word here — shape for it, making the reader feel the chaos of illness. But if the book were too shapeless, I knew, no one would read it. And it was important to me that this book be read not only by people suffering from illness but by their family members and the health-care workers who treated them. I wanted to lure them into caring about what is easy to ignore. So, I thought a lot about story and what keeps the reader going; one answer is that we read to learn, right? Not only what happened, but why it happened. We read to know more about our plight.
From the start, then, I wanted to blend my own story with extensive research, not least because, when I was sick, I did a huge amount of research to understand what was wrong with me. Why was I suffering from drenching night sweats, vertigo, and fatigue? When I look back at myself in 1998, when I first became symptomatic, I think how naïve I was to accept the idea given to me by doctors that “nothing was wrong.” I am shocked by how little I understood about my own body, the triggers that made me sick, and health care’s structural realities. So, I wanted to capture the drama of all that, the desperate journey from ignorance to a different kind of understanding, in which I accepted that I lived a life touched by profound illness. This led to internal changes I’ll likely never be able to communicate.
Was there anything in Sontag’s Illness as Metaphor that you hoped to support, then advance, with your book?
Sontag makes two very important points in Illness as Metaphor. The first is that we tend to psychologize diseases we don’t understand: we like to turn those diseases into metaphors, and usually into metaphors that harm the sick and serve the well (by allowing them to look away/differentiate themselves from the sick). The second important point Sontag makes is that each age misunderstands a major illness in ways that reveal crucial things about the cultural assumptions of that age.
I wanted to update her argument about cancer as the signature disease of its time to show the ways in which autoimmune disease and immune-mediated illness are the key pathologies of our time: they reveal the dark side and the unrealistic assumptions of our productivity-focused era. In the 21st century, missing work for one day is a big deal, right? We talk about productivity all the time. You can’t just lie in bed on the bad days because late capitalism doesn’t tolerate that kind of deviance from a state of “health” — the state where you as a worker are always frenetically doing more (a reality that may itself contribute to disease). Then, too, we are witnessing a dramatic rise in autoimmune disease in developed Western nations, for reasons that researchers attribute to “environmental” changes. Environment, in medical discourse, can refer to everything from our surrounding ecology to our own microbiome. Some researchers point to the rise of chemicals around us, or changes in food production as possible reasons for the rise in this kind of disease. And so, you can argue, as I do, that this silent epidemic is triggered by social policies that fail to protect individual bodies — even as we lay the responsibility for illness at the feet of the individual.
What do you consider to be modern health care’s biggest failures?
We have three problems. First, we have a siloed system that makes it hard for people with systemic chronic illnesses to get adequate and well-coordinated treatments. Second, our system wants to fix, not treat, not care for. But chronically ill patients need care. Third, it’s a system based on measurement — doctors like to test and see the biomarkers before they treat. The pivot toward measurement in the late 19th century brought with it the advent of modern medicine and saved many lives. Thank God for evidence-based medicine! But the pivot to measurement had one surprising and perhaps not fully theorized downside: it meant that patients with hard-to-measure diseases, or diseases that were not yet fully understood, faced real challenges in getting recognition of their illnesses. As Susan Block, a Harvard professor of medicine, put it to me, “The tendency in many parts of medicine is, if we can’t measure it, it doesn’t exist, or the patient is cuckoo.” That’s a real failing.
How did you find the shape of your story, where the overall pacing, unpacking of ideas, and focused precision on individual cases could capture the disruptive manifestation of chronic illness?
It took me a long time to find the book’s shape. Chronic illnesses of the sort I am writing about — including autoimmune diseases, ME/CFS, long COVID, chronic Lyme disease or post-treatment Lyme disease syndrome, and more — can come and go, relapse and remit, and are, from the outside, a bit anti-dramatic. They are often invisible. People who aren’t sick see your illness as a given. But for you it is an ongoing internal drama. So, I was driven by the question of how to make that drama visible — and, crucially, how to do that without making my own story falsely tidy. Early versions of this book were more repetitive, and less self-aware about that repetitiveness. So, I worked to create some meta-moments that would cue the reader to the fact that they were going on a roller coaster, one that wasn’t going to end with me “overcoming” illness. I needed to figure out how to move forward having made space for untidiness, because I wanted to subvert the usual shape of an illness narrative, which traditionally ends with recovery. Writing the introduction, where I bluntly tell the reader this, was liberating to me.
At what point did long COVID factor into your material? Did it complicate the manuscript? Expand the story?
When the coronavirus pandemic started in early 2020, I was alarmed not only by the acute crisis around us but also by the idea that we might soon be facing a secondary crisis — a wave of chronic illness triggered by SARS-CoV-2 in a subset of patients. The reporting I’d been doing for the book had taught me that infections can trigger ongoing illness in some patients who get them, for reasons that are still poorly understood. The factors may include genetics, prior infections, previous exposure to chemicals, or trauma. Having learned a lot about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), so-called “chronic Lyme disease,” and more infection-initiated syndromes, I was pretty worried. I began reading message boards and interviewing “long-haulers” in June 2020, then focused my research on the work being done at Mount Sinai in New York City. Their approach to long COVID suggested to me a possible model for how health care might deal with the silent epidemic of immune-mediated illness that I write about. It was encouraging to realize that there were researchers and physicians out there — among them Akiko Iwasaki at Yale and David Putrino, Amy Kontorovich, and the folks at the Center of Post-COVID Care at Mount Sinai, which I’ve written about — who really care about patients and are doing great work.
That reporting added about six months of work. It seemed to me that long COVID might be a turning point in medicine’s willingness to at least consider the reality of these illnesses. The scope of the pandemic meant that attention was on long COVID patients in a way it never was on ME/CFS patients, and funding was newly available. I don’t want to be Pollyanna-ish about it, of course. We have a long way to go before medical science adequately understands and effectively treats these diseases.
Note, too, that the more long COVID enters the national discourse, the more pushback arises. There is a concerted attempt, particularly on the right, to discredit the reality of long COVID and to suggest that it is overblown or psychiatric in origin. Yet the research coming out points to clear biomarkers and suggests plausible biological factors. That said, one thing I’d like to see in the long COVID discourse is a lot more specificity about what appear to be distinct forms and causes of it. Some people with long COVID may have autonomic nervous system disorders; others may have newly triggered autoimmune disease; and some may have post-viral fatigue that will resolve over time. Or they may have combinations of these things. But the long COVID deniers take our very real need for a more granular understanding of long COVID and turn it into an easier-to-tolerate falsehood, that the disease is somehow mostly in people’s heads. They ignore the science that clearly shows real biological changes at work.
Had the medical community disregarded long COVID patients’ testimonies, would your book be different?
Generally speaking, the medical community has taken long COVID more seriously more quickly than it has other infection-associated illnesses. If that had not happened, I think the end of the book, where I write about solutions, would be much more about hoping against hope for change rather than seeing models for change that allow me, now, to believe it might occur. I do have a little bit of hope! (And I hope I’m right to have it.) There is a long way to go, though; much of the medical community has disregarded the testimonies of long COVID patients and continues to think long COVID is exaggerated or mainly psychiatric in origin. But it is fair to say that long COVID is galvanizing the medical community to talk more about infection-associated chronic illness.
Your narrative held space for uncertainty. What does uncertainty mean to you as the writer?
At one point, I announced to my partner, Jim, “I finally know what my book is about! It’s about uncertainty.” He laughed, and said, “That might be a tough sell — you read the whole book and get to the end only to be told, ‘I still know nothing!’” So that was a challenge. But it was the reality! I couldn’t pretend at the end that I had lots of certainty about my experience of being sick; I don’t. Some days are still bad days. For instance, I still have no idea what the true cause of what I call my “electric shocks” — a form of neuropathy — is.
As a writer, I had to answer the question: What was the arc of the book, if it was not from “not-knowing” to “knowing”? And I realized that the real story here was a journey from a reductive desire to avoid pain and achieve “knowledge” to the more open-ended embrace of the knowledge that we can’t control our own outcomes.
You are a poet, nonfiction author, culture editor, and literary critic. Was one of those skills more essential to completing the work? How did you strike a balance as you shifted literary gears while maintaining a coherent narrative flow?
I experienced the illness with all parts of myself: the poet who observes and searches for metaphors, the journalist who likes to research, the critic who tries to reframe narratives she finds lacking or overly simplistic. But it was really tricky to figure out how to unify them. I was worried that the pivots from the poetic sections to the sections where I report on medical science would make the book feel impossibly disjunctive: I swivel from lyrical moments of interiority to distilling quite a lot of dense scientific information.
I realized over time that pacing and characterization of myself on the page were the most important issues, from a craft perspective: if I could establish myself as a narrator/memoirist who really was learning and reading science (as I in fact was in real life), even as she also tended to write and think like a poet at times, then the narrative would hold together. The key, from a pacing perspective, was not to overwhelm the reader with thickets of information, so that the narrative propulsion got lost. That was what I was trying to do, at least: build a story in which research and specialist knowledge happened to play a key role.
When did the impulse to write this book become unstoppable? Has telling your story created a new relationship with vulnerability? Did writing it make you more recognizable to yourself?
In 2013, when I got sick but still had no understanding of what was wrong with me, I found myself with an urgent need to narrate my experience. And your question hints at the reason why: it was in order to become recognizable to myself again. The person I thought I was had largely disappeared, leaving only a low pilot flame of herself. In the absence of answers, I had to try to uncover the true story — like a detective or a character in a young adult novel seeking to learn her true name.
When putting your story on the page, did personal boundaries change? For example, before I got very sick, I’d never imagined taking a fecal test. And for sure I never thought I’d share that information with other people. Ironically, I never gave a second thought to collecting my dog’s poop for the veterinarian to examine.
Actually living with illness probably changed me more than writing the story of living with illness. The illness changed me, and because I was not alone in this experience, I felt I had to talk about things I might once have kept very private. Illness takes what is calcified and careful inside you and drives you to talk more frankly — with more sense of life’s burning realities! In that sense, it also elicits intense conversation. As I told my own story — out of need — other people started telling me about their suffering, in ways I would never have guessed at. Realizing how many of us carry the burden of pain or illness changed me, too.
Chronic illness, especially when there is an absence of diagnosis and symptoms intensify, brings one closer to feelings of dying. Susan Sontag was obsessed with death, yet not resigned to it. At 71, she underwent an adult stem-cell transplant with a minuscule chance of success. What kept you going during the worst of your illness?
I’m very stubborn, a quality I inherited from my Irish American father. He had a vivid sense of right and wrong; in particular, he hated when a dominant cultural narrative had the effect of silencing some real but uncomfortable aspect of human experience. What kept me going when I was most sick was a conviction that something was wrong — not just with me but also with a society that was silencing millions of patients like me and you.
I talked to dozens of people who had difficulty getting diagnosed or having their illnesses recognized as “real.” And yet we medicalize all sorts of behaviors and facets of experience. For God’s sake, there is a medical term for “ice-cream headache”! But it seemed no one had a biological explanation for the fatigue I felt, or medical interest in what my brain fog meant. It was quite odd to see how often doctors psychologize the subjective experience of illness, especially when the patient testifying about her problems is a woman. Yet huge numbers of people with conditions like mine were not getting diagnosis in a timely way; they were being dismissed or turned away by doctors.
Today, I do have good days along with bad ones. But millions of people never do. I can remember just how debilitating that was, and my heart goes out to them. It is a profound form of suffering to live in a society that turns away from your pain, rendering it invisible.
Since your book now exists as a resource for others, how do you see yourself navigating the potential outpouring from readers seeking more information and guidance?
I wrote this book to be in conversation with others and, yes, to serve as a resource. Perhaps others will add to this discussion in their own ways. My goal was to address major issues I experienced, including a sense of shame I felt about the need for recognition of my illness, or the times I felt dislocated from myself and even alienated from others, including my partner. I have the desire to personally help anyone who emails me! Since that is not possible, though, I remind myself that, as you say, the book is the object I’ve been able to share, the one real contribution I can make.
The book’s second epigraph, from the philosopher Alasdair MacIntyre, speaks to the issue of co-authorship: “We are never more (and sometimes less) than the co-authors of our own narratives.” What does that quotation mean to you?
We are never isolated when we are sick. Our sickness is shaped by the society around us as much as by our biology. And autoimmune diseases are on the rise in developed Western nations, it appears, in no small part because of social changes — changes to the environment, our increasing use of chemicals, changes we have made to food production. So, the sick person is not the only author of her narrative. Her illness experience is shaped by policy, by her own expectations, and by the way that others see her and her disease.
Has writing this book changed you as a writer?
Yes, it has! But how? I can’t exactly say. I do have the sense of having finished a task that long seemed impossible. I’m not saying that the book fully accomplishes what I wanted it to do but just that, for a long time, I thought maybe I couldn’t do it. So, some pride and sense of accomplishment come with that. But the questions also arise: Will I ever have a story I so urgently need to tell again? What comes after the project that consumed me for almost a decade, a huge part of my life? I don’t know! Right now, I’m just writing riffs and notes.
What books would your friends be surprised to find on your bookshelf?
Hmm, maybe some murder mysteries and Twilight.
Yvonne Conza’s writing has appeared in Longreads, The Believer, Electric Literature, LARB, Bomb Magazine, AGNI, The Rumpus, Joyland Magazine, Blue Mesa Review, Ex/Post, and elsewhere. London’s Dodo Ink and Scotland’s Epoch Press have included her work in the 2021 anthologies Trauma: Art as a response to Mental Health and Aftermath.