To Stop the Shrug: An Interview with Susannah Cahalan
By Taylor LarsenApril 18, 2020
This deeply honest and layered book weaves Cahalan’s own experiences with being misdiagnosed with serious mental illness when she really had an autoimmune disease that had side effects of hallucinations and delusions when left untreated. With deep respect for all of the prejudices that surround mental illness in our culture today and throughout history, she attempts to penetrate what truths can be taken from this provocative experiment that took people inside the doors of asylums where often shocking practices were occurring. All was not as it seemed, both in the asylums themselves and in the conclusions and interpretations of the study, making this book one that cracks the subject open rather than provides the final word.
TAYLOR LARSEN: You obviously have a deep respect for people suffering from mental health issues, in the past and presently. This book revolves around the horrors of misdiagnosis, more specifically, how prevalent misdiagnosis was and still is. You discuss your own experience with a baffling physical condition that had symptoms suggesting mental illness was the cause. This section of your book describes the harrowing experience:
I remember vividly the imaginary bedbugs, which I believed had taken my apartment hostage; falling apart in the New York Post newsroom; nearly jumping out the window of my father’s third-floor apartment; the nurses I was convinced were really undercover reporters come to spy on me; the floating eyes that terrified me in the bathroom; the belief that I could age people with my mind. I remember, too, the smug dispassionate psychiatrist who had treated me in the hospital, calling me an “interesting case” and dosing me with what we would later learn were unnecessary amounts of antipsychotic medications.
Did you feel compelled to illuminate the complexities of mental illness based on your own baffling experiences?
SUSANNAH CAHALAN: This book would not exist without my personal experience with psychosis — with the other side. I’m not sure how deep my interest was in the mind and madness before I was sick, but after I recovered I became fixated on what happened to me, how easily I could lose my grasp on reality, how simple it was for my whole world to fall apart, to become alien to myself. I briefly thought that I had put aside that time when I finished my memoir Brain on Fire, but in reality, I was left with more questions that I hadn’t yet had the courage to face. So many stories that I encountered didn’t fit neatly into the narrative of “psychiatric versus neurological” or “organic versus non-organic.” I started to realize that I was perpetuating some of this “us versus them” mentality in medicine and I wanted to interrogate why. Out of that interrogation came The Great Pretender.
This is a provocative book, as it explores a loaded topic. What were your fears going into exploring this particular study and also the topic of mental illness in a historical sense? Were you worried your intentions might be misunderstood?
Absolutely. There were so many fears. I quoted medical historian Edward Shorter at the beginning of the book: “The history of psychiatry is a minefield.” There are so many ways you can fail or fall prey to dogma or extremism and there are so many passionate people with views that are completely at odds with one another. It’s fraught territory. I tried to maintain a sense of fairness, while also remaining faithful to my core beliefs. The way that I reckoned with this in the book is that I was upfront (at least I hope) about my own biases from the beginning. I came to this book very skeptical about psychiatry and of course the parts of the history I decided to include in the book, especially in the beginning, reflect what I was bringing from my own past to the narrative. I hope that by being totally forthcoming about my past opens up a discussion that people may disagree or agree with. As one person I interviewed corrected me: It’s not the history, it’s a history.
This interview feels kismet to me because I take a particular interest in mental illnesses that seem perhaps linked to other deeper issues. In personal relationships, years ago I dated a man who was given the diagnosis of schizoaffective disorder, and yet, with holistic body work over years, the condition appears to have resolved itself. I have also seen extended family members suffer from deep-seated shame due to having mental issues that were hard to diagnose and even more difficult to successfully “treat.” For the former, I don’t know if his diagnosis was accurate and ended up saving his life or if it was a misdiagnosis or perhaps he had gone into remission. You talk about people not being able to “overcome the tag.” You bring up German physician Johann Christian Reil, who championed what would later be called “the holistic approach” in 1808. Maybe Reil would have treated my boyfriend holistically had he been his patient.
Thank you for sharing a bit of your own history here. I think it shows you that most of us can connect personally or through a loved one with these big issues. I do hasten to add that holistic care meant something very different when Reil first coined the word “psychiatrie” in German, though I think that his definition — one that connects not only the body and the brain, but also the soul in clinical care is (whether they know it or not) deployed by truly great doctors. A bit of an aside: I heard about Reil from one of my favorite psychiatrists, Dr. Belinda Lennox from Oxford, who pushed me to be a bit fairer to the field, especially in its origin years. She’s the one who told me to look to Reil, and I’m so glad she did. His work was so prescient and compassionate, and I think we have more to learn from him today.
What do you think the psychiatric world would currently be like if Rosenhan had not done his study?
It’s so hard to say with any certainty. I think that Rosenhan did not create the problems. I think he put an emphasis on certain issues, made them less nuanced, and ultimately created a backlash that was more extreme than it should have been. Perhaps we wouldn’t have embraced the DSM (Diagnostic and Statistical Manual of Mental Disorders) with such blind devotion had the study not been published as it was; perhaps we would have been more careful about the mass closing of institutions without a safety net of something like community care; perhaps psychiatry wouldn’t have been as embattled and embarrassed and might have been more honest about its own limitations.
Is there a particular story in here that haunts you the most to this day?
I can’t seem to move past the one story of the young woman who had been in and out of psychiatric care for two years, suffering from many of the same symptoms that I suffered from, and, like me, was diagnosed with serious mental illness — in her case schizophrenia. I went to her hospital and spoke there to the staff, and after one of her doctors came up to me and said, “We have someone here who sounds like you.” They tested her and two weeks later got the right diagnosis: like me, she had autoimmune encephalitis. The big difference was that she was misdiagnosed for two years and I was only misdiagnosed for a month. She would, her doctor told me, never fully recover. This was one of the key stories that pushed me to continue writing about issues of diagnosis and mental health care, and she’s someone I will never be able to push out of my mind.
Speak to us more specifically about the relationship between Robert Spitzer and Rosenhan — how did Spitzer’s strong reaction to and critique of the study aid in exposing important points about this topic and the limitations of the study?
Spitzer and Rosenhan are great foils. On one end, you have Rosenhan, this charismatic, shadowy figure, a natural storyteller who was a bit fast and loose with his data, but who could charm a crowd. On the other end, you have Spitzer, who would go on to create the bible of psychiatry, the DSM-3, a “truthseeker,” as his wife described, who loved categorizing everything (even tracked the hotness of his female campers at sleepaway camp) and didn’t see a data set he didn’t love. And they had this very public battle of wits with Spitzer decrying Rosenhan’s study as “pseudoscience” with its “logic in remission.” It’s a real tough, biting, beautifully bitchy takedown, though it didn’t stick outside of psychiatry because it seemed like sour grapes. Privately the two battled over a series of correspondences that was just a joy to read — there I ultimately found that Spitzer knows more about Rosenhan’s fabrications. It made me wonder: Why didn’t Spitzer jam the stake into the heart of this study? I think it’s because the study, which deeply embarrassed psychiatry at the time, was worth more alive than dead and he could use it to show how seriously diagnosis needed to change in the field — and guess what? He had an answer: The DSM-3.
Bill Underwood’s experience undercover inside the hospital is presented as more traumatic than the others. What was the most disturbing part for his wife, Maryon, to process, when you spoke with them?
Maryon seemed to be upset even 50 years later by the thought that her husband, a man she met in high school, who graduated valedictorian and always seemed to have his head on straight, had taken a completely passive role in a looming institution. He could be “zapped” (as she feared) or prescribed meds or put in solitary or worse. He had zero control, and I think when she arrived to see him frighteningly groggy (after he had failed to cheek his pills properly and ingested Thorazine) was just an affront. He was transformed, and she feared that this was a permanent change.
You bring Foucault into the discussion in terms of “the medical gaze.” It is, as you write,
the dehumanization of patients first described by Michel Foucault in his 1963 book The Birth of The Clinic: An Archaeology of Medical Perception. Foucault wrote that his detached way of looking at illness emerged during the Enlightenment, as doctors learned more about the body. Relying on empirical knowledge, rather than on magical thinking, to diagnose. Since then, clinicians have grown so reliant on these objective facts in the form of charts, percentages, and test results that they no longer saw their patients. Rosenhan’s experience was a perfect example of such clinical blindness — the doctors read Rosenhan’s chart but failed to see the patient standing right in front of them.
There seems to be a critique of detachment in addition to your critique of cruel practices and errors.
I think this detachment is what leads to many cruel practices and misdiagnosis. You have to be detached from the human you’re treating to do things like lobotomies; you have to be detached to see someone only through the prism of their diagnosis in which every symptom, every behavior supports that neat diagnosis, to so grossly misdiagnose undercover patients.
One of the things I admire most about your writing is how honest you are in admitting your own biases and judgments. You discuss the father who called you out on being so distinct about delineating between “physical” and “psychiatric” in your own case. What did you learn from this encounter?
I realized only in the aftermath of Brain on Fire how much unconscious bias I was directing toward my own fears about my brush with mental illness. When I would talk about my illness, I would always be careful to make a stark distinction: they thought it was psychiatric, but it was really a neurological, organic condition. If people would get it wrong and say that I had a mental illness, I would bristle and get aggressive. When I was first sick, I didn’t want anyone to know what had happened because I was embarrassed, and then when I felt safe in my knowledge about the illness, I wanted everyone to know that I didn’t have a mental illness. Talking to this father, who laid it out so neatly and beautifully, If we believe that schizophrenia is a brain illness, then what is the difference between his case and your case? He was right, of course. It was then that I realized that I was contributing to an outdated, primitive understanding of the mind/brain and even contributing to the dangerous duality that almost took my life.
I can’t even begin to complete the amount of research that went into this project — what was the hardest part? Were their days that were entirely frustrating, and can you share any anecdotes?
It seems like a gift from nonfiction writer heaven now, but when the study started to fall apart and I couldn’t find many of the participants and things didn’t add up about Rosenhan, that’s when I really started to worry. I thought that the book was over. It’s interesting now that the book’s greatest strength was nearly its demise. Research pulls us through some really unexpected twists and turns.
In Nellie Bly’s chapter, you write of her experience: “the first day, she quickly learned what it was like to be discarded by humanity…” and end with: “Other than some money being thrown at the problem, nothing changed after Bly’s exposé […] one of the most sophisticated and moneyed cities in the world, now aware of such cruelty visited upon its citizens, simply shrugged. As we still do.” This is potent. Instead of shrugging, othering, or hastily diagnosing, in what ways would you like to see the psychiatric community shift in the coming years? What’s your hope?
There’s so much to be excited about from the research side, but as we wait for these interventions (and I remain an optimistic), I hope that psychiatry can really take a hard look at what it can offer to those suffering right at this very moment. Good care comes from truly listening and bonding to patients — the whole “laying of hands” that distinguishes mediocre doctors from great ones — using all the senses with the patient and maintaining an open mind, searching for answers outside of the immediately obvious. I think we’ve turned our back on the more artistic side of clinical care because it’s not lucrative and it’s difficult, because it’s much easier to write a script and call it a day, and the system itself does not reward this kind of interaction. So clearly things need to change within our broken medical system in general. But I think that at the very simplest: psychiatrists need the time and space to spend more time with their patients. And we need to figure out a way to force the system to give them that opportunity.
Taylor Larsen is the author of Stranger, Father, Beloved. She teaches fiction writing at Catapult and Concordia St. Paul.
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