As awareness of the coronavirus dawned in America, people scrambled for testing. For critical care and practical concern, peace of mind and preventative safety, individuals sought a diagnosis for symptoms that could possibly indicate COVID-19. For many, an accurate diagnosis was difficult, if not impossible, to come by. The lack of available tests, insurance coverage, and definitive results precluded such a medical classification, revealing both the fissures in the US health-care system and the limits of existing scientific knowledge. At best, the pandemic has directed national attention to whom our systems of care fail and how hamstrung these systems are by the edges of clinical understanding.
The path to medical diagnosis often proves fraught, even for those with structural privilege and extensive networks of support. In 2009, the young investigative journalist Susannah Cahalan found herself desperately ill, her mental health deteriorating. Doctors struggled to classify and successfully treat her mysterious sickness. As Cahalan would later recount in Brain on Fire (2012)—which topped the New York Times best-seller list—she could have died or spent her life in institutions if her family had not pushed for further testing and care.
The turning point came when a creative, empathic doctor took over her case. She was diagnosed with anti-NMDA-receptor encephalitis—a rare neurological condition that can cause psychiatric symptoms, including psychosis and hallucinations. Discovered just two years before Cahalan’s diagnosis, the disease was only beginning to gain wider clinical awareness. It took a month for Cahalan to be properly diagnosed and well over a year for her to return to her baseline. But she made a full recovery.
Now Cahalan has written a new book, The Great Pretender, which revisits the issues of medical classification and treatment raised in Brain on Fire. The book explores the controversial 1973 psychiatric study in which Dr. David Rosenhan instructed eight “pseudo-patients” to feign symptoms of mental illness and be admitted to psychiatric facilities.
Tracing a counterhistory of psychiatry, Cahalan explores how gender, race, and socioeconomics shape models of well-being and protocols of treatment. In so doing, she gestures toward the role the humanities and social sciences play in navigating competing popular narratives of disease and contemplates what the creative arts have to offer to medical understanding.
Lisa Mendelman and Victoria Papa recently (virtually) sat down with Cahalan to discuss her new book and the workings of diagnosis and care in the time of the coronavirus.
Victoria Papa (VP): In The Great Pretender, you write, “Psychiatry at its best is what all medicine needs more of—humanity, art, listening, and sympathy.” And you integrate a range of artistic media—from the poetry of Emily Dickinson to the lyrics of “California Dreamin’”—into your writing about science and illness. What do the creative arts have to offer to medical understanding?
Susannah Cahalan (SC): Everything, really. My own experience of psychosis, as well as other people’s experiences of illness, can’t be summed up using only medical records and can’t be understood solely through a clinical lens. There is a whole aspect of medicine, the act of truly connecting with a patient, that you aren’t reimbursed for by insurance companies and you can’t really quantify or study, and so it’s not respected. But it’s the art of clinical care.
That art of care is honestly what saved my life. And in all my research about psychiatry and discussions with many people in the field, those who are very good clinicians are the ones who have engaged with the humanities—in the literal sense of embracing narratives and literature, but also in the humanistic sense of truly relating to others on a personal level. I hope that is one of the major takeaways for young clinicians reading my books: they do have to access that side of care to be truly great doctors. And, really, to be truly great humans.
Lisa Mendelman (LM): Brain on Fire is dedicated to “those without a diagnosis,” while The Great Pretender focuses on “the validity issues at the core of diagnosis.” How do you envision the work that diagnosis does in the world, both as a scientific practice of identifying and classifying pathology and, more broadly, as a cultural framework for understanding personhood? Put differently, how do you think our extant medical diagnoses facilitate and, alternately, hinder access to care?
SC: I had this faith in the idea of diagnosis. It’s why I’m still here talking to you; my diagnosis was a sign of progress in neuroscience. The more we learn, the better our ability to diagnose gets. In that sense, Brain on Fire has a lot of faith in that system. Understandably, because I benefited from that system.
Yet, as I started to learn more about the history of psychiatry, in particular, and medicine, in general, I realized that the question of diagnosis is much murkier. Yes, we have to have organizing principles for the way we look at diseases, and we have to compile specific symptoms to categorize disorders. We have to look at the trajectory of an illness, timeframe—all those things lead us to better understandings, or hopefully will lead us to better interventions, treatments, or potentially even cures.
But that faith that I had in diagnosis, it turns out, doesn’t always square with reality. So, The Great Pretender is my coming to terms with how porous and unreliable diagnosis can be.
VP: For those of us who are privileged, a good deal of the COVID-19 discourse has centered not on catching the disease itself, but on questions of mental health. This popular attention seems to be a corollary to a moment in The Great Pretender, in which you offer this snapshot of an earlier era: “In 1969, the concept of mental illness—of madness, of craziness, of deviance—had become a topic of conversation like never before in the history of our country. It became more of a philosophical debate than a medical one.”
One could write a parallel sentence for the present: in 2020, the concept of mental health—of self-care, of resilience, of well-being—has become a topic of conversation like never before in the history of our country. It has become more of a philosophical debate than a medical one.
How do you understand our current concerns about mental health? Do you see these as productive for advancing broader understandings of mental illness and of psychiatry’s aims? Are these discussions too narrowly focused on “the worried well”?
SC: I love this question. In fact, the distinctions between mental health and mental illness are at the heart of the internal identity-crisis issues that psychiatry faces. Today, there is not enough focus on people with serious mental illness, not enough funding and care given to people who are homeless and in our prison population. That’s a travesty.
However, I do think mental wellness, mental health, is extremely important. Especially because research has shown us again and again that psychiatrists are not very good at anticipating behavior. There are a lot of issues with anticipating violent behavior, and studies have shown that mental health professionals do very, very poorly at anticipating suicide risk. If we can’t anticipate potentially deadly behaviors, then we have to make sure we are at least attempting to reach as wide a swath of people as possible and really addressing their mental health and mental well-being. Working on mental health and well-being is not an insignificant goal—it’s important to the health of society at large.
VP: This switch from mental illness to mental health is tricky, because of the commodification of self-care. The rhetoric around self-care has been co-opted by certain products, certain corporations.
LM: In a way, it is very American, or very Western, to invest in this narrative that it’s your job to take care of yourself and make yourself feel better, rather than to reckon with the structures we inhabit and the ways in which those deeply shape our well-being.
Yet, the ability to inhabit structures and not think about them is a privilege—even if those structures are not conducive to one’s flourishing. The ability to sustain such tension and ambiguity is structural and context specific. If a patient walks into a doctor’s office and is told, “The cause of your suffering really could be any number of things and I’m sorry I can’t help you with any conclusive pathway forward,” that is a deeply unsatisfying answer.
SC: And that’s institutional, too. You may not get an insurance reimbursement if doctors don’t have a diagnosis.
I understand, as a patient—and we’ve all been patients at some point—that the name, the diagnosis, is extremely important. Not only for healing but for the purposes of naming the suffering, even if you don’t know what that name means. A diagnosis can change a whole outlook. It can change how we cope. Even if the prognosis is dire, having a label can generate meaning and direction.
This also brings up the question of preventive medicine, really. How much do we invest in illnesses or diseases that have not yet emerged—have not yet been diagnosed—and do we treat before the crisis or do we treat after the crisis, when perhaps it’s too late?
In that sense, psychiatry illuminates many of the issues that medicine faces when identifying the origin of illness. Freudian psychiatry in the early and mid-20th century understood nurture as a primary contributor to illness. That emphasis on nurture was proven to be over the top (take, for instance, the idea of the “schizophrenogenic mother”), and psychiatry then swung to the other side, where the cause is all biological. And that may be too far, too.
Our approach to these complicated questions is like a pendulum swinging back and forth between extremes, and how do we in life, in medicine, et cetera, allow that middle ground? I don’t know if it is possible, but I also don’t know how we move forward if we keep swinging back and forth between these polar opposites.
LM: F. Scott Fitzgerald spoke to those conundrums when he wrote (riffing on John Keats) that “the test of a first-rate intelligence is the ability to hold two opposed ideas in mind at the same time and still retain the ability to function.” This model of wellness comes up in The Great Pretender, too, as the book discusses how psychiatry has ultimately chosen—for reasons that I understand and I support—to value functionality.
But of course, function and functionality are not objective measures of health, because our world could always be built otherwise. And so, on some level, what psychiatric diagnosis assesses is how you function in the world as it is, as opposed to in some other world that might be.
And what is adaptive in our current context is not necessarily ideal. For example, at the moment, our adaptive capacity to go into lockdown and live in isolation is also having intense consequences for our mental health. A recent article in The Atlantic cited a Columbia University psychiatrist who estimates that 50 percent of the US population is experiencing depressive symptoms. So, while it is highly adaptive and highly functional to have responded to COVID-19 by going into quarantine, these choices and behaviors are also producing what are arguably counteradaptive or counterfunctional experiences. So, again, it’s not either/or, it’s both/and. It’s functional for the purposes that we’re inhabiting and it is also clearly not conducive to our flourishing in any sustainable way.
SC: At what point does situational depression become clinical depression, diagnosable depression? And at what point are we overdiagnosing contextual or situational depression and missing the most severe cases?
There are terrible implications if our diagnostic “buckets” are too wide or too narrow. Too narrow, and we miss out on helping people who need it; too wide, and we overdiagnose and overtreat.
VP: One of the more promising and hopeful modes of care that you touch on in The Great Pretender is community care. You write about a “new model of care” as it applies to psychiatric treatment and facilities.
You describe a “community care model” first envisioned by JFK and his 1963 Community Mental Health Act, which never fully came to fruition: “Trouble is, for all of its idealism and promise, the dreams of community care were never actualized because funds never materialized. The money was intended to follow the patients. It didn’t. The community care model at its very best provided nominal care to the least impaired. Those with the most severe forms of these disorders were ignored or cast aside.”
In recent times, we’ve seen the rise of grassroots mutual-aid practices, and so these words “community” and “care” are very resonant now. What have you gleaned from your research into these community-care models? And how do you view your work as a writer and researcher within a praxis of care?
SC: There are areas in the world that are engaging very deeply in this community-care model and have woven it into the social fabric of their cities. One of them is Trieste, in Italy. That city is very much considered to be the gold standard of psychiatric care.
Trieste’s is a model of community care. They do have an acute-care center with some overnight beds, but most of the care happens in the community. There are tiered levels of care, and some supportive housing. There are mobile triage units that reach people in the community. It’s a part of the lifestyle there.
Every single one of the citizens has signed on to that model. And from what I can tell from the people whom I’ve interviewed, it’s been wildly successful.
Police are very rarely, if ever, really involved in mental health care there. As opposed to here, where the criminal justice system is one of the primary places that oversees care of some of the sickest people in society.
It’s been amazing to see this community-care model play out in the real world. Now there is a whole push to adopt some of the Trieste-style approaches to care in California. Before COVID-19, the state was in the beginning stages of trying to get some of these things off the ground—offering not a one-size-fits-all standard of care, but one that combines acute care with community care.
Kerry Morrison, a civilian who was so disgusted by the way the very sick homeless people in her neighborhood in LA were being mistreated, was spearheading this push. One of the most important parts of her goals for California was to stop that merry-go-round of very sick people entering the criminal justice system—getting them help before they ended up in prisons or jails.
LM: The Great Pretender is dedicated to “those who need to believe”—which would seem to be all of us. Your attention to the emotional attachments that undergird reason and science—along with your attention to the social influences that shape our perception—evokes current conversations about fact and fiction, and about medical treatment and projections of recovery.
How do you think about these current conversations about truth, accuracy, and knowledge production, particularly in terms of medical diagnosis and treatment? So many of our current conversations would seem to erode any faith that we might have, and yet, paradoxically, shore up the need to believe. I’m thinking here of ongoing discussions about reliable scientific data and recommendations and the pervasive awareness that science and politics are intimate bedfellows.
SC: Just because you say that there are issues with diagnosis—that there are validity issues at the core of psychiatry, that there is diagnostic murkiness in medicine in general—doesn’t mean that there’s no “there” there. And that we can’t agree on certain facts or truths.
It gets very dangerous when we allow those facts to fall away. You see the results of this in the anti-vaccination movement and in a lot of conspiracy-theory narratives. There are some truths and there are some things that we as a society need to come together and affirm.
I want to reveal the uncertainty in the gray area, but I don’t want to contribute to those false narratives.
VP: I think you pull that off incredibly well in The Great Pretender. You pair dense research with deeply philosophical questions to put together a palatable narrative that is accessible to a wide audience. The book, though, does more than just make a complex, research-driven story accessible. As you intend, it also generatively maintains uncertainties—about Rosenhan and his study, about the discipline, about the nature of the psyche—that cannot be simply answered by research. As I see it, one of the things your work drives at is that there is much to be learned from uncertainty.
LM: Yes! Your books especially underscore these gray areas in the histories of psychiatry. How do you understand the relationship between culture and medicine, both now and in the longer histories of psychiatry that you’ve traced? I’m thinking here of what you’ve written about deinstitutionalization and the criminalization of mental illness.
And then—to take this line of inquiry in a different direction—what role might scholars in the humanities and social sciences play in navigating competing popular narratives of disease?
SC: We are constrained so much by the tools at hand—this is true of medicine and writing. When we look to the past, we have to keep in mind not only the context of the times, but who are the authors of our history.
A small example of this: I tried to find medical records in hospitals throughout this country and found that few kept their records. Even a federally funded hospital like St. Elizabeths in Washington, DC, which you think would hold on to its records, told me that they discard every patient record of the years that don’t end in a zero or a five—completely arbitrary. I think that reflects how these institutions feel about their patients.
Another story that illustrates this: I went to a forensic hospital in California to do some research. While there, I was told this story about a rocky, fallow field where the hospital had decided to put up a new building. It was only after the field had been completely cleared and the rocks had been piled up that they realized these were not rocks—they were tombstones. Only then did they realize that they had just completely desecrated a cemetery, likely the only remains left of the interred people’s lives.
As academics, and as writers in general, it’s our mission to get access to those stories that were lost. These are not the stories that medicine necessarily wants us to tell, but that means it’s doubly important that we try our best to track down these narratives. We need to hear these stories in order to understand the stakes, the toll, and the potential for harm—in the present and future. We need these stories to survive so that we can learn from them.