These issues partially explain why I didn’t receive the smug reaction from the mental health community that I expected when I started to share my investigation outside the small world around Rosenhan. A few expressed shock, but many claimed not to be surprised. Psychiatrist Allen Frances listened to my case, then interrupted: “Before we get to that, could you go after the Koch brothers next?” But then he let the news sink in. That study was key to Robert Spitzer’s work. Without it, “Spitzer could never have done what he did with DSM-III,” he said. To find out that at least part of it was flimsy—if not worse—was far from vindicating; it was disheartening.
One psychiatrist friend started ranting about how the study was “ridiculous” and that Rosenhan’s focus on labeling was “total bullshit.” She wouldn’t concede that his larger points—namely about how patients are treated because of those labels—had any validity. Eventually she got so red in the face that I promised I wouldn’t bring it up again.
At a research conference in Europe, where I was invited to speak about my illness, I agreed to meet a small group of research-oriented psychologists and psychiatrists for dinner after my talk. We met at a hotel bar that seemed plucked out of Midtown Manhattan, and joined four people at a table, all of whom were drinking martinis. I ordered a Manhattan, ignoring a voice warning me that it was never a good idea to drink bourbon cocktails at a professional event with strangers. The psychiatrists joked that they were going to “stay on New York time” so that they could just party through the conference. They talked a bit about my presentation and asked a few questions, but it was clear they were in vacation mode so the questions veered off-track.
One person asked: “How do schizophrenics feel about your book?”
I wasn’t aware that there was one way that people with schizophrenia felt about anything, let alone my book. I looked back at him blankly, until one of the psychologists spoke for me. “Schizophrenics don’t read.” No one reacted. Was this a joke or was this truly the way a clinician felt about his patients?
Later, at a crowded restaurant, our table got rowdier the more alcohol we consumed. At some point, the subject of Rosenhan came up and I spoke a little about my research.
The psychologist who’d made the comment about people with schizophrenia not reading interrupted me. “I don’t understand why you’re even focusing on this study,” he said, his voice thick. “I have no idea why you would do something that is so anti-psychiatry.”
When I told him about my growing suspicions about the study, he got even more aggressive.
“Something like this is bad for all of us,” he said, making a sweeping motion around the table, his voice rising in the now near-empty restaurant. The same person who was happy to dismiss the study as “anti-psychiatry” immediately raised his hackles at evidence that it wasn’t aboveboard. Could it be that keeping this study solid benefited the narrative sold to many people in and outside the field—that we’re making steady progress, that the bad old days are behind us?
“You have an opportunity to do something good and instead you focus on this,” he said, now pounding on the table. “Whether you like it or not, you’re a symbol, and you should do something good with that power.”
Perhaps it was the jet lag, or the latent frustration of getting nowhere with the pseudopatients, or the growing certainty that the study was fabricated and the feelings of disappointment I had about the man behind it, or the mixture of red wine and Manhattans. Perhaps it was the fact that he called me a symbol (a symbol of what?). Whatever the cause, I lost it. I disappeared into the restaurant’s closet-size bathroom, gazed into my own bleary eyes in the mirror, and mouthed, Get yourself together—remembering my own mirror image, the one who would not thrive as I had. I calmed myself enough to return to the table, my eyes red and my mascara smeared, where I couldn’t help but launch back in. “I’m not trying to attack psychiatry. Give me a positive story to write and I will,” I said, standing at the head of the table and speaking too loudly.
He looked up at me, resigned, put down his wine, and said, “Give me ten years.”
We don’t have ten years.
27
MOONS OF JUPITER
Taunted by death, chilled by the unknown, reproached by ambiguity, we doctors defy the dark, brandishing whatever truthiness we might have at our disposal. Humours, meridians, alchemy, or molecular biology, our scientific beliefs themselves are not as important as is the slim and ultimately betraying comfort they temporarily provide.
—Rita Charon and Peter Wyer,
“The Art of Medicine,” Lancet
I don’t know what happened to the young woman—my mirror image—who was misdiagnosed with schizophrenia for years before finally getting the proper diagnosis. Once she left the psychiatric hospital, the doctors lost track of her and she became just another patient with a poor prognosis, once an interesting case, now another name in the files. Did she surpass her doctors’ low expectations and surprise everyone with a miraculous recovery, as I did? Or is she simply another casualty of bad timing?
For every miracle like me, there are a hundred like my mirror image; a thousand rotting away in jails or abandoned on the streets for the sin of being mentally ill; a million told that it’s all in their heads. As if our brains aren’t inside those heads, as if that warrants dismissal, not further investigation. As if there could be any other response but humility in the face of the devastating enigma that is the brain.
“I think we should be honest about—acknowledge how limited our understanding is,” Oxford psychiatrist Belinda Lennox told me. “That’s the only way we’ll do better.”
Being honest about our limitations, as Dr. Lennox suggests, involves taking a harsh look at our history and the “truths” that we’ve accepted at face value. If solutions seem too good to be true, too categorical, too concrete, they usually are. When nuance is lost, medicine suffers.
That’s where David Rosenhan and his paper come in. Rosenhan’s study, though only a sliver of the pie, fed into our worst instincts: For psychiatry, it bred embarrassment, which forced the embattled field to double down on certainty where none existed, misdirecting years of research, treatment, and care. For the rest of us, it gave us a narrative that sounded good, but had appalling effects on the day-to-day lives of people living with serious mental illness.
Rosenhan did not create these outcomes, but his study enabled them. And now psychiatry is overdue for a reassessment of the terms we deploy, the new technologies on the horizon, the way we treat the sickest.
The psychiatric community, and society at large, is finally starting to rethink our terminology, which drives our social and health policies. Some, like advocate DJ Jaffe, argue that the mental illness net is far too wide and that we should focus on the 4 percent of the population who are most seriously ill, devoting the bulk of our funds to their treatment, instead of to the “worried well,” whom psychoanalysts catered to in Rosenhan’s era.
On the other side of the aisle, Dutch psychiatrist Jim van Os, who wrote “The Slow Death of the Concept of Schizophrenia and the Painful Birth of the Psychosis Spectrum” in 2017, believes we should put mental illness on a continuum. The big fat manual that is the DSM should be condensed to “not more than ten diagnoses,” Dr. van Os told me, umbrella terms, like psychosis syndrome and anxiety syndrome, with gradients of symptoms, he argues. Dr. van Os believes this is the honest approach: It concedes, Hey, we really don’t know.
The research community has reached similar crossroads. “Is schizophrenia disappearing?” one academic article asks; another poses the question: “Should the label schizophrenia be abandoned?”
There already are real-world implications to these queries. During his tenure as the director of the NIMH—the second longest ever in the agency’s history—Dr. Thomas Insel implemented a new system that eschews DSM criteria called the Research Domain Criteria. The RDoC, as it’s called, breaks down clunky labels like schizophrenia into their component parts: psychosis, delus
ions, memory impairment, and so on, rendering the wide concept of schizophrenia as scientifically meaningless in a research setting. (Insel has since left the NIMH for greener Silicon Valley pastures, and his RDoC has not been universally accepted—half of NIMH-funded studies still rely on DSM diagnoses. At this point the DSM, it seems, is too widely entrenched in the field to be fully replaced.)
Now instead of seeing something like schizophrenia as a monolithic entity—almost too massive to study—people want to approach the disorder the same way we do cancer, by acknowledging the unique qualities of every case. The sheer variety of what we call schizophrenia might alarm anyone who does not personally know someone with schizophrenia. Some exhibit robust psychosis with delusions and paranoia, some hear voices, some have greater cognitive impairments and are more socially isolated, some are professors, some forgo hygiene, some become hyper-religious, some lose a great deal of their memories, some navigate the world without appearing to have any symptoms, and others don’t speak at all and sit in a catatonic stupor. Some respond to drugs and live full and meaningful lives; some—from 10 to 30 percent—recover; others never do. But we don’t hear about the variety. Instead, we get people like the psychiatrist in London asking me how schizophrenics feel about my book. Instead, we see the most extreme cases, the ones who end up on the streets with chronic forms of untreated psychosis. And so the narrative goes: Once you’ve been touched, you’re lost.
What is now almost gospel is that the umbrella terms we use, like schizophrenia, have many causes, and that we should use “the schizophrenias” or “psychosis spectrum disorders,” which gestures to the scant consensus about etiology. This perspective is partially due to genetic studies on serious mental illness, which have thus far remained inconclusive. Genetics is such a challenging area because there is not one gene associated with each disorder (as is the case with cystic fibrosis, which involves a mutation of one specific gene), but hundreds. However, several studies have now revealed a “genetic overlap” in psychiatric disorders, especially among bipolar disorder, schizophrenia, major depressive disorder, and attention-deficit/hyperactivity disorders. “The tradition of drawing these sharp lines when patients are diagnosed probably doesn’t follow the reality, where mechanisms in the brain might cause overlapping symptoms,” said Ben Neale, an associate professor in the Analytic and Translational Unit at Massachusetts General Hospital. This may just offer scientific proof for what many in and outside the field have been saying for so long: The hardline differences among the terms we use do not have scientific validity.
It’s telling that the more we open our eyes to what we don’t know, the more excitement builds in the research community. Emerging studies exploring the link between the immune system and the brain—as is the case for autoimmune encephalitis—have galvanized the quest to understand how thoroughly the body itself influences and alters behavior, spurring studies of immune-suppressing drugs on people with serious mental illnesses. Researchers have estimated that as many as a third of people with schizophrenia display some immune dysfunction, though what that means about the underlying cause of the illness remains unclear.
An interest in the connection between the gut and the brain has led to some fascinating research on probiotics, which have been shown to reduce mania and some of the more robust symptoms of schizophrenia. Psychiatric epidemiologists are also finding that people born in winter months—during times of heightened flu and viral infections—may be more likely to develop serious mental illness (though people with more severe forms of the illnesses are more likely to be born in the summer months, so who knows). There are examples of psychosis brought on by gluten intolerance or cured by a bone-marrow transplant; of people misdiagnosed with serious mental illness who had Lyme disease or lupus. The more we learn about the body and its interaction with the brain, the more the shroud begins to lift.
Meanwhile, new technologies are also providing deeper access to the brain than ever before. “What I teach my students is, ‘How did Galileo manage to demonstrate the veracity of the Copernican view of the [sun-centered] universe?’ Well, the main advances were incremental in their ability to refine glass into lenses. Not very sexy, except that he could use that to make his own telescope and see the moons of Jupiter,” Dr. Steven Hyman of the Broad Institute told me. Hyman was admittedly “giddy” after his institute published a highly touted paper in Nature in 2016 that linked schizophrenia with a protein called complement component 4 (C4), which plays a role in “pruning” the brain in young adulthood, marking unnecessary synapses that should be removed as the maturing brain hones itself. Though only in its early stages, this line of inquiry provides a model of schizophrenia that might involve such “overpruning.”
Greater tools are on the horizon (or already here) to allow us to peer into the still-mysterious machinations of the brain, including Drop-Seq, which one day may provide the cell-by-cell census of the brain; optogenetics, which manipulates brain circuits in live animals using light; CLARITY, which melts away the superstructure of the brain, making tissue transparent as a way to look at the fine structure of cells three-dimensionally; and a new technique (described in Science’s January 2019 issue) that uses 3-D technology and higher resolution to pinpoint individual neurons in record time. Labs across the country are also making stem cells out of skin cells from people diagnosed with mental illnesses and manipulating them in order to understand how the brain functions or malfunctions. They are in essence creating “mini-brains” (at this very moment!), which will allow them to study in real time how medications affect each individual brain.
IBM’s Watson team told me about plans to create “Freud in a box.” Their hope is to get Watson qualified as a psychiatrist. Watson would not replace psychiatrists, they explained; to the contrary, the computer algorithm would give psychiatrists more time to really talk to the patient and interact human-to-human. Some psychiatrists tell me that they are enthusiastic about wearable tech, which would give them access to mountains of data that were formerly self-reported. “Digital phenotyping” could chart everything from how active a person is to how often she opens the fridge to how many times a day she logs in to her social media accounts. Passive listening devices could monitor the content and tone of speech. There are wearable “galvanic” skin sensors that could create biofeedback on anxiety levels. There are even swallowable sensors that could tell a doctor if you’re taking your meds, as well as ongoing studies using virtual reality programs as treatment for phobias. As exciting (and, yes, ominously Big Brother) as this sounds, it doesn’t get us closer to fixing the validity issues at the core of diagnosis. Data alone will not give us the answer to the question: If sanity and insanity exist, how shall we know them? But it might help.
This new enthusiasm is starting to breed a new faith. Or, at least, it looks that way (I’ve learned to be wary of putative easy fixes). The old guard tells me that they have begun to notice something that has long been missing: optimism. More medical students are pursuing careers in the field, and, perhaps not coincidentally, after years of modest gains, the average psychiatrist’s salary increased more than that of any other specialty in 2018—higher than the take-home pay of immunologists and neurologists. “We have never seen demand for psychiatrists this high in our 30-year history,” a physician recruiting firm said in 2018. “Demand for mental health services has exploded.”
Also promising are the indicators that the damning distrust created by years of psychiatry’s coziness with Big Pharma has started to self-correct. While psychiatry has become more transparent about its connections, pharmaceutical companies have begun devoting less funding to psychiatric research—decreasing its flow to those areas by 70 percent over the past decade after so many drugs failed to beat placebos, or after the expiration of lucrative patents (Zyprexa, Cymbalta, Prozac, to name a recent few). Though lost research dollars never sounds like a good thing (and a loss of investment in finding new advancements is certainly not), a few smaller, niche companies are stepping
in and focusing on psychiatric research—looking to investigate new drug pathways and incorporating genetics into treatment (a field called pharmacogenetics). “It is to be hoped that a younger generation of researchers will break out of the confines of traditional theorizing that started a process but left the path to its conclusion obscure,” wrote veteran researcher psychiatrists Dr. Eve Johnstone and Dr. David Cunningham Owens in Brain and Neuroscience Advances in 2018. In other words, fresh eyes may just open up a new path.
And as it turns out, the advances in pharmacology don’t even need to be new. Another exciting path happens to have been paved long ago. After years of being stymied by the War on Drugs, which made research of Schedule 1 drugs almost impossible, we are now in the midst of a psychedelic revival. Clinicians now use LSD and psilocybin as treatment for everything from depression to PTSD. Even brain stimulation, which originated in the 1950s as a way to “treat” homosexuality and schizophrenia, is making a comeback of sorts. Some techniques involve implanting electrodes that send electric pulses right to specific brain tissue, another attaches the electrodes noninvasively on the scalp. These procedures are now gaining ground in top hospitals for treatment of a host of issues from OCD to depression to Parkinson’s. Meanwhile, a variation of the anesthetic ketamine (developed in 1962 and nicknamed “special K” by club kids in the ’80s and ’90s) was recently approved by the FDA for use in treatment-resistant depression, which affects 20 percent or more of people with the disorder. It is quite striking to see a drug that’s been around since Rosenhan’s era being touted on all the morning shows as one of the biggest breakthroughs in psychiatric medicine in the last fifty years.
The Great Pretender Page 28