ARI SHAPIRO, HOST:
Susannah Cahalan had all the symptoms of a severe mental illness.
SUSANNAH CAHALAN: I was hallucinating. I was paranoid. I was actively psychotic.
SHAPIRO: What she didn't have was a mental illness. Cahalan actually had an autoimmune disease that caused inflammation of the brain. She wrote about the experience of being misdiagnosed and her eventual recovery in her 2012 memoir.
Now she's writing about the idea of misdiagnosis from a different angle. Her new nonfiction book is called "The Great Pretender." It explores a blockbuster study that profoundly changed the course of psychiatry. Susannah Cahalan told me she got the idea for this book after an encounter at a conference where she was speaking.
CAHALAN: After my talk where I presented my case, a doctor there, a psychiatrist, came up to me and said, there is a woman here that sounds a lot like you, and she's been in out of this hospital for about two years. And like me, she was misdiagnosed with a serious mental illness - in her case, schizophrenia. Two weeks later, I actually found out that they tested her for the same disease that I had, and she had tested positive. The huge difference between the two of us, however, was I was misdiagnosed for one month, and she was misdiagnosed for two years.
And he told me that this woman would never recover and that she would likely operate as a permanent child for the rest of her life. And I started to ask questions about, you know, how are we getting this so wrong? How can we get this so wrong? And what do we mean when we say mental illness?
SHAPIRO: Is there a difference between mental and physiological illness? If the brain is an organ, why aren't we treating sicknesses of the brain the way we treat sicknesses of the heart or the kidney?
CAHALAN: Exactly. You know, we use these words, in the mind. But the mind is the brain. I mean, how can we make these distinctions? So that was a huge catalyst for me in the beginning.
SHAPIRO: So your own story lays out many of the themes of this book of - how do we diagnose mental illness? How do we distinguish mental from physical illness? These questions led you to a study in 1973. What was the premise of the study?
CAHALAN: This study, called On Being Sane In Insane Places, featured eight people who went undercover in 12 hospitals around the country. When they presented themselves to psychiatrists, they told them about only one symptom. They heard a voice that said, thud, empty or hollow. Based on that symptom alone, all eight were diagnosed with serious mental illness, one of which was manic depression. The rest was schizophrenia.
And from the moment they were admitted to the hospital, however, they dropped any kind of exhibiting of any other symptoms and behaved as normally as one could in that environment. But what happened was their label stuck to them.
SHAPIRO: You describe it as a damning paper. That almost undersells the impact that it had. I mean, it was like a nuclear bomb going off in the middle of the field of mental health. What was its impact?
CAHALAN: I think it's a perfect analogy. I mean, one psychiatrist at the time described it as a sword plunged into the heart of psychiatry. And, you know, this was around the time wherein psychiatry was having its kind of anxious years. You know, it still used psychoanalysis, but it was uncomfortable with that position. There was a kind of movement, a push to move away from that. Meanwhile, psychiatric hospitals were the subject of horrific exposes. You know, the public really started to doubt psychiatry's legitimacy as a medical specialty.
SHAPIRO: Tell us about the man who led this study, David Rosenhan.
CAHALAN: So David Rosenhan, who, unfortunately, I've never met because he passed away about a year before...
SHAPIRO: But you must feel like you know him better than most people you've known your whole life.
CAHALAN: I do. I do. I'm able to kind of access his amazing mind because he left behind a treasure trove of documents, and what you walk away with is this guy is charismatic. You know, he is evocative. He's seductive. You know, students of his told me that he had this kind of golden voice, and he could just rivet, you know, the class with just a few words.
SHAPIRO: So as impactful as this study was on its own, if it needed a good salesman, it had one in David Rosenhan.
CAHALAN: Absolutely.
SHAPIRO: So what kinds of changes to the field of psychiatry and psychology make because of this study?
CAHALAN: One of the major ones was it supported a lot of the beliefs at the time that psychiatric hospitals were harmful, damaging places. And it supported a movement to the institutionalization that, you know, we have the aftereffects of now, and that's one of the kind of primary effects. But it also forced the field to come to terms with its inability and its difficulty in creating a reliable way of diagnosing mental illness.
And one of the aftereffects of the study was that a man named Robert Spitzer, who would go on to create the DSM, which is the Diagnostic Statistical Manual of Mental Disorders...
SHAPIRO: This is, like, the encyclopedia that mental health professionals used to diagnose people today.
CAHALAN: It's been described as the Bible of psychiatry. So Robert Spitzer, who's the architect of that, he wrote vociferous takedowns of this study. And his wife, who was one of the creators of the DSM-III as well, told me that this study was very much at the forefront of his mind when he was creating the diagnostic system that we still use today.
SHAPIRO: So the book starts out being kind of a chronicle of this landmark study and the impact that it had on psychiatry. But from the very beginning, there are these kind of odd questions like, why didn't he ever publish the book that he was contracted to write? Why did the identities of the participants in the study remain so hidden?
And as you kind of pick at these scabs over the course of your research, you - I mean, I don't want to give too much away, but you basically unearth a substantial amount of evidence suggesting that maybe this study and the man behind it are not what everyone was led to believe. So how do you assess the work and the impact in light of everything you've learned? I mean, does this mean that the study was without value, that the impact it had was misguided? What's your take?
CAHALAN: I mean, it's kind of both, you know? In some ways, the things that I did find really undermine the study in a serious way. And it actually was - it was hard for me to grapple with that because I started as such a fan of the study. And to see all the various ways that it - in a way, I felt that Rosenhan let me down. You know, it was kind of upsetting, to be honest.
SHAPIRO: And in fact, when you brought your findings to other psychiatrists, they felt betrayed. They were like, how dare you do this to our hero, this guy we have on a pedestal?
CAHALAN: In a way, yes. I mean, I think in some ways, psychiatry used this study as a way to show, look how far we've come. And to say that maybe this study wasn't as, you know, legitimate as its place in science made it seem - I think that really was unnerving, and it was for me, too. But, you know, it's interesting because I think that this study had some bad effects that we're still experiencing now, and I think one of those is the total vilification of psychiatric hospitalization. However, I do believe that there were many things that he unveiled in this study that were very true.
SHAPIRO: The book explores boundaries in many ways - between healthy and mentally ill, between illnesses that we describe as mental illnesses versus physical illnesses. And reading the book, I sense that on some level, you view those distinctions as part of the problem.
CAHALAN: I do. It's a complicated question. Just today on my walk, you know, around my neighborhood in New York City, I saw someone who is very seriously mentally ill who was homeless on the street. And I thought, would our, you know, relationship with that person be different if we thought they had Alzheimer's rather than mental illness? You know, these questions are things that we as a society have to deal with, and I hope that this book contributes to that conversation.
SHAPIRO: Susannah Cahalan, thank you for talking with us today.
CAHALAN: Thank you so much for having me.
SHAPIRO: Her new book is called "The Great Pretender." Transcript provided by NPR, Copyright NPR.