The Trouble With The DSM
With the release of the DSM-5 this month, psychotherapist Gary Greenberg questions whether psychiatry's diagnostic Bible can truly get at the nature of mental suffering.
The Book of Woe
In 2012, I got a voice-mail message from a former patient; I’ll call him Sandy. I last saw him about ten years ago. I’d worked with him from the time he was in his junior year in high school until he finished his graduate studies. He’d been plagued by anxiety so severe that he was unable to attend school and, eventually, to leave his house at all. Early on in therapy, he’d told me that he was sure he was gay, and that this was what had led him to hole up in his room contemplating suicide as the preferable alternative to what his parents and pastor, who hadn’t deleted homosexuality from their book of sins, called “the gay lifestyle.” We talked about this, and more generally about what therapists and patients talk about: parents, friends, regrets, confusion, and fear. I can’t tell you why, but therapy worked, at least enough to get him to overcome his self-loathing and his parents’ disapproval and to come out, in all senses of that phrase. Last I knew, he had a job and a life in a faraway city. He could work, love, and stay alive, which, by my lights, is about all we can ask for. He kept in touch sporadically via e-mail or phone to tell me what he was up to or to let me know he’d seen something I’d written in a magazine.
The message went like this:
“I know I shouldn’t call you, and I promise I won’t call you again. But you’ve got to help me. They’ve sucked all the bones out of my body. I’m here in this hotel room and my bones are gone. My mother and my father and James. They’ve done this to me. And I don’t want to die. Please don’t let them kill me. Don’t let them. You’re the only one who can help. You know I love you, and I love Ellen Goldstein, too. Good-bye. Goodbye.” (I made up those names.)
He didn’t leave a number, but according to caller ID, he was calling from a Holiday Inn a thousand miles from where, as far as I knew, he had last been living. Sandy had checked out by the time I tried to return the call. I don’t know where he went next. But I am pretty sure about one thing: his parents and James, whoever he was, did not suck the bones out of his body, and they probably weren’t about to cook Sandy up in a stew, or whatever he was sure they were going to do. I would guess they didn’t even know where he was. I’m not even sure Sandy knew where he was. As I write this, I still don’t know what became of him.
Now, if you’re like me and most everyone I know, the first thing that you think when you hear a story like this is that Sandy is mentally ill. But what do we mean when we say this?
The first answer is that he is crazy. That is, he is behaving in a way that is abnormal, bizarre, out of touch with reality. The technical term here is psychotic or delusional. I think this is self-evident, and even if I didn’t care about Sandy, I wouldn’t think it is benign, a sane response to an insane world, say, or some salutary plunge into the collective unconscious. He was in trouble; he was, as the current jargon goes, dysfunctional; his inner life had gone haywire; he needed help.
But what kind of trouble? And what kind of help?
This brings us to the second answer: that his craziness is best understood as the manifestation of a disease that is medical in nature, that is in some essential way no different from all the other diseases that afflict us, and that is best left to doctors to understand and treat.
A good diagnosis must be more than the fancy of the diagnostician. It must carve nature at its joints.We have become accustomed to thinking of disease in a very specific way: as a pathology of the body, something gone wrong in our tissues or our cells or our molecules. You secrete too much of this or don’t produce enough of that, or the rate of the other thing is too high or low, and that is why you can’t walk up stairs without losing breath, or why you are in pain or are losing weight, and why, if you don’t do what the doctor says to do, if you don’t take his pill or let him plunge his scalpel into your skin or drip poison into your veins, you will continue to suffer, or your suffering will get worse, or you will die.
But before you will submit to the cure, you have to believe that the doctor knows something about your pain that you do not, that she can identify that disease, that she is on familiar terms with it, that she knows it by name. She must, in other words, give you a diagnosis.
Diagnosis comes from two Greek words meaning “to learn” and “apart.” It is a knowledge that sorts one thing from another. The Greeks understood how hard it is to parse the world, especially when it comes to complex experiences. “Love is a madness,” Socrates tells Phaedrus, and to understand that madness, to untangle it from other experiences, he says that two principles must be upheld. “First, the comprehension of scattered particulars in one idea” that is clearly and consistently described. But, Socrates continues, we can’t gather the particulars together under just any idea. No matter how vividly described or comprehensive the categories, and no matter how well they seem to cohere, they must also be fashioned “according to the natural formation, where the joint is, not breaking any part as a bad carver might.” A good diagnosis must be more than the fancy of the diagnostician, more than merely deft. It must also be accurate. It must carve nature at its joints.
What is true for the madness that is love is true for any madness at all—or, for that matter, any suffering that doctors purport to understand. The diagnostician’s job is to find the disease that unites the scattered symptoms and makes them manifest in precisely the way they do, to say with certainty that this distress is the result of that illness and no other. The diagnostic enterprise hinges on an optimistic notion: that disease is part of a natural world that only awaits our understanding. But even if this is true, nature gives up its secrets grudgingly, and our finite senses are in some ways ill suited to extracting them. More important, our prejudices lead us to tear nature where we want it to break. Science, especially modern medicine, is founded on this equally optimistic idea: that experts can purge their inquiry of prejudice and desire, and map the landscape of suffering along its natural boundaries.
Greek doctors, as it turned out, were not so good at this. They had some ideas about what those natural formations were, largely having to do with four bodily humors—blood, bile, phlegm, and melancholy— that, if thrown out of balance, could cause illness. But humoral theory was more metaphysics and wishful thinking than truth. Even Hippocrates and his disciples seemed to know this, as they traded mostly in empiricism—the painstaking observation of the way symptoms appeared to the doctor’s senses, the courses they took, the outcomes they reached, and the interventions that affected them.
In the nineteenth century, most doctors still believed that humoral imbalances caused disease. Before John Snow could persuade the local government to close the infected well that caused the 1854 cholera outbreak in London, he had to overcome the common idea that the disease was carried by a miasma, bad air that could upset humoral balance. Louis Pasteur and Robert Koch had to work hard to convince their colleagues that germs caused diseases like rabies and anthrax, and that they (the germs, not the colleagues) could be targeted and killed. As the microscope and the chemical assay provided incontrovertible evidence of germs and their destruction, doctors were won over to the germ theory, and soon it seemed that they had begun to fulfill Socrates’ dictum to find the natural joints that separated our ills from one another.
By the turn of the twentieth century, doctors were stalking disease like Sherlock Holmes stalked criminals. Under the magnification of their microscopes, syphilis, diabetes, and streptococcus, to name just a few, soon yielded their secrets and their terrifying hold on us. With their newfound ability to parse suffering, to track it down to the bodily processes causing it, and then to dispatch it with a potion or a surgery, doctors gained prestige—and with it, money and power. They were rewarded as much for their prowess in relieving suffering as for the promise they now embodied: that they could use science to give a name to someone’s suffering and then, having named it, to relieve it.
This revolution in medicine accounts in part for the immense appeal of considering craziness to be just another disease. If scientific understanding and cure were possible for the suffering of the body, then why not for the suffering of the mind? If Sandy’s conviction that his bones have been sucked out of his body is some kind of metaphor, if the content of his delusion brims with meaning—an expression of impotence, a lack of backbone, an inability to hold himself up—then it is out of the reach of the microscope and the X-ray. It requires what the ancient doctors offered: interpretation and the invocation of metaphysics, of something beyond the symptom. But if the delusion is only another symptom, if it is not, in principle, different from the malaise and relentless thirst of an untreated diabetic, or the narrowing of vision of a glaucoma patient, or the fever of someone with malaria, then it can be brought under the physician’s purview. It doesn’t need to be understood in itself any more than fever or thirst does. It can be explained, it can be treated, and it can be cured.
If you’ve gotten sick or injured and a doctor has restored you to health or if you’ve seen this happen to someone else—and who hasn’t?— then you know the lure of this promise. If you’ve watched your child descend into psychosis or your husband spin out into mania or yourself struggle to get off the bed onto which depression has laid you, then you know it even better.
On the other hand, if you’ve been involved with the mental health industry, then you probably also know that the promise is not always fulfilled. Even if doctors can settle on a name for Sandy’s illness—and this is not a sure thing; they are likely to be torn between Schizophrenia and Bipolar Disorder—they will not be able to scratch out a prescription, tell him to take two and call in the morning. He may end up taking a drug indicated for a different diagnosis, or a cocktail of pills—one to quell his hallucinations, one to temper his agitation, one to relieve his depression, and one to help him sleep—and the combination may change monthly or even weekly, or it may work for a while and then stop. No one will be able to explain why that happened, any more than they will be able to explain why the drugs worked in the first place. No honest psychiatrist will claim that she cured Sandy’s, or anyone’s, mental illness; and while she is being honest, she may acknowledge that, for the most part, her treatments are targeted at symptoms, not diseases, and that she selects them as much by intuition and experience as by scientific evidence.
But psychiatry’s appeal is not just about the possibility of cure, which is why the profession continues to flourish even when it cures nothing and relieves symptoms only haphazardly. It’s in the naming itself. What Wallace Stevens called the “blessed rage to order” is so deep in us that it is in our origin story: the first thing the Bible’s authors have Adam and Eve do to establish their dominion over Eden is to name its flora and fauna. That story doesn’t have a happy ending, and neither does the one I’m about to tell you (although in the latter case, there is good reason for that). But the rage itself is surely blessed, or at least as blessed as we humans can be, and as noble. Give a name to suffering, perhaps the most immediate reminder of our insignificance and powerlessness, and suddenly it bears the trace of the human. It becomes part of our story. It is redeemed.
But what kind of story? And what kind of names?
But psychiatry’s appeal is not just about the possibility of cure; it’s in the naming itself.The DSM-IV, the most recent edition of the manual, sorts psychiatric problems into chapters like “Mood Disorders” and “Feeding and Eating Disorders” and from there into individual illnesses like Major Depressive Disorder (MDD) or Bulimia Nervosa, each of which might have its own specifiers, so that a complete diagnosis might read Major Depressive Disorder, Recurrent, Severe, with Melancholic Features. For each disorder, criteria are listed. There are, for instance, nine criteria for a Major Depressive Episode; if you meet five of them, then you have fulfilled the necessary condition for that diagnosis; and if you meet four others in addition, then you have sufficient symptoms to earn the MDD label. In addition to the criteria, the DSM supplies text, a not-quite narrative account of the prevalence, family and gender patterns, and other associated features of the disorder, and instructs doctors how to differentiate among disorders that resemble one another. Depending on how you count—whether or not you consider each subtype its own disorder, for instance—the DSM-IV lists around three hundred disorders in its nearly one thousand pages.
You could think of the DSM as a handbook designed to help doctors recognize the varieties of psychological travail, not unlike the way Audubon’s field guides help ornithologists recognize birds. You could think of it, as some people (especially its critics) do, as the Bible of psychiatry, providing a scriptural basis for the profession. You could think of it—and this is what the APA would like you to do with the DSM-5—as a living document, akin to the U.S. Constitution, a set of generalizations about the present, flexible and yet lasting enough to see an institution into the future. Or you could think of the DSM as a collection of short stories about our psychological distress, an anthology of suffering. You could think of it as the book of our woes.
All of these work; I favor the last one, but then again, I’m hardly unprejudiced, and even I have to admit that the DSM barely qualifies as literature. It’s lacking in plot, and it bears all the traces of having been written by committee; it is, as Henry James said of the nineteenth-century novel, a “loose, baggy monster.” But then again, unlike the works of Tolstoy and Thackeray, the DSM belongs to a genre that is forgiving of poor writing, that ends up inviting and rewarding it. The book avoids the Latinate jargon that physicians tend to favor, but it is written by doctors and designed to be used in medical offices and hospitals around the world; it is a medical text. Which, nowadays anyway, means it is a scientific text, one that casts its subjects into dry, data-driven stories, freed from the vagaries of hope and desire, of prejudice and ignorance and fear, and anchored instead in the laws of nature.
I’m not sure that this is the right genre for understanding us, and I’m not alone in my doubts. Psychiatry didn’t always have dominion over the landscape of mental suffering, at least not the kind that shows up in everyday life. Psychiatrists, once known as “alienists,” originally presided over asylums housing people too crazy to function outside them. The treatments the doctors doled out, if they doled out any at all, varied from hospital to hospital and took place largely out of the view of polite society. Psychiatrists did not appear on television to give relationship advice. They did not suggest ways to beat the winter blues. They did not prescribe cocktails of psychoactive drugs to accountants and schoolteachers while telling them what they suffered from.
Not that there weren’t doctors doing those things or their equivalents. But most of them were neurologists like George Beard, who suggested, toward the end of the nineteenth century, that symptoms ranging from “insomnia, flushing, drowsiness, bad dreams” through “ticklishness, vague pains and flying neuralgias” to “exhaustion after defecation” added up to a disease that, in his bestselling American Nervousness, he christened neurasthenia. Or Silas Weir Mitchell, author of the bestselling Fat and Blood, his account of how to treat neurasthenia and hysteria (the details of which I won’t go into; just use your imagination on the title and you’ll get the idea), who was the inspiration for “The Yellow Wallpaper,” Charlotte Perkins Gilman’s famous fictionalized account of the rest cure she took at his hands. Or John Harvey Kellogg, who teamed up with his industrialist brother, Will, to introduce America’s fatigued brain workers to the wonders of flaked cereals, electric light baths, and pelvic massage. Or Sigmund Freud, whose ideas about intrapsychic conflict as the source of psychological turmoil, which he called neurosis, landed on American soil (along with Freud himself) in 1909.
Whatever the merits of their particular theories, these doctors had one thing in common. People flocked to them, to the spas where nurses swaddled them for their naps, to the offices where they were shocked or steamed or vibrated, and to the analysts’ couches where they disburdened themselves of their family secrets and lurid fantasies. The everyday psychopathology of the masses was a burgeoning and protean market, especially among the swelling ranks of the affluent; and doctors, armed with the authority of the microscope and the pharmacy, had seized it.
The enormous opportunity created by the democratizing of mental illness, and exploited by neurologists, was not lost on psychiatrists. In the first third of the twentieth century, they began to escape the asylum, setting out mostly for private offices, where they, too, began to minister to the walking wounded, mostly by practicing psychoanalysis. Their colleagues/competitors included neurologists, but they also included anthropologists and art historians and social workers—nonmedical people who had been trained in psychoanalysis and had hung out their shingles. Given the ascendant power of medicine, these lay analysts might well have failed to capture much of the market from doctors, but the New York Psychoanalytic Society, dominated by psychiatrists, was not content to wait for the invisible hand to lift them to dominance. In 1926, for reasons it didn’t spell out explicitly, it declared that only physicians could practice psychoanalysis.
Back in Vienna, Freud, who had long loathed America as a land of the shallow and unsophisticated, was livid. “As long as I live,” he thundered, “I shall balk at having psychoanalysis swallowed by medicine.” He spelled out the reasons for his objections in The Question of Lay Analysis. Medical education, he wrote, was exactly the wrong training for the therapist’s job. “It burdens [a doctor] with too much . . . of which he can never make use, and there is a danger of its diverting his interest and his whole mode of thought from the understanding of psychical phenomena.” Instead of learning from “the mental sciences, from psychology, the history of civilization and sociology,” Freud wrote, would-be physician analysts would learn only “anatomy, biology and the study of evolution.” They would thus be subject to “the temptation to flirt with endocrinology and the autonomous nervous system,” and to turn psychoanalysis into just another “specialized branch of medicine, like radiology.”
Think of the DSM as an anthology of suffering.Steeped in the wrong genre, Freud worried, doctors would not provide the densely layered readings of their patients’ suffering that he had offered in his essays on subjects like melancholia and narcissism, in case studies about delusional characters like the Wolf Man and the Rat Man, and in books declaring the significance of the seemingly insignificant, of dreams and jokes and slips of the tongue. They would not try, as analysts surely would, to understand the reason Sandy thought someone had sucked out his bones, as opposed to the infinity of other delusions he could have had. Instead, they would offer the kind of cure suggested in their medical texts, the kind that doesn’t care what, if anything, the delusion itself might actually mean.
Freud might not have minded that first DSM, which was issued in 1952, thirteen years after his death. He might have recognized his legacy in the names of the sections—”Disorders of Psychogenic Origin” and “Psychoneurotic Disorders”—and of diagnoses such as anxiety reaction and sexual deviation. He might have been pleased by the literary descriptions, steeped in psychoanalysis, which turned up, for instance, in the definition of depressive reaction as the result of “the patient’s ambivalent feeling toward his loss.” Buoyed by the continued presence in the book’s 132 pages of his notion that the mind was a host of inchoate and often contradictory feelings, Freud might have been willing to acknowledge that his forecast of a hostile takeover of psychoanalysis by medicine had been wrong. He might even have admired his descendants for their cleverness in avoiding that fate and yet still claiming the perquisites of the doctor, for having figured out how to have it both ways.
But Freud might also have predicted that it was only a matter of time before the strain between the reductive impulse of medicine and the expansive nature of psychoanalysis raised internal havoc. The problems began in 1949, before the first DSM was published, when a psychologist showed that psychiatrists presented with the same information about the same patient agreed on a diagnosis only about 20 percent of the time. By 1962, despite various attempts to solve this problem, clinicians still were agreeing less often than they disagreed, at least according to a major study. In 1968, at just around the time the second edition of the DSM came out, research showed that for any given psychotic patient, doctors in Great Britain were more likely to render a diagnosis of manic depression than schizophrenia, while doctors in the United States tended to do the opposite—a difference that was obviously more about the doctors than the patients.
In the meantime, one of psychiatry’s own had turned against it. Thomas Szasz, an upstate New York doctor with a libertarian bent, argued in The Myth of Mental Illness (1961) that psychiatrists had mistaken “problems of living”—the age-old complaints that characterize our inner lives—for medical illnesses, and the result was a loss of personal responsibility (and a sweetening of the pot for doctors). Also in the early 1960s, Erving Goffman and Michel Foucault, among other academics, chimed in with their view that mental illness was more sociological than medical, and that psychiatrists were pathologizing deviancy rather than turning up genuine illness—which they (along with Szasz) believed existed only in cases where physiological pathology could be identified as the source of the trouble.
The arguments about diagnostic agreement and the nature of mental illness might have remained arcane academic topics had it not been for a Stanford sociologist, David Rosenhan, who, in 1972, sent a cadre of healthy graduate students to various emergency rooms with the same vague complaint: that they were hearing a voice in their heads that said “Thud.” All the students were admitted with a diagnosis of schizophrenia, and although they acted normally once they were hospitalized (or normally for graduate students; they spent much of their time making notes, behavior that was duly jotted down in their charts as indicative of their illness), the diagnosis was never recanted. Some were released by doctors, and others had to be rescued from the hospital by their colleagues, but all were discharged with a diagnosis of Schizophrenia, in Remission.
Rosenhan’s recounting of his exploit, “On Being Sane in Insane Places,” appeared in the January 1973 edition of Science. Later that year, gay activists, including some psychiatrists, after years of increasingly public and contentious debate, finally persuaded the APA to remove homosexuality from the DSM—a good move, no doubt, but one that, especially after what had happened to the graduate students, couldn’t help but reveal that even when psychiatrists did agree on a diagnosis, they might have been diagnosing something that wasn’t an illness. Or, to put it another way, psychiatrists didn’t seem to know the difference between sickness and health.
Forty years, two full rewrites, and two interim revisions of the DSM later, they still don’t. Psychiatrists have gotten better at agreeing on which scattered particulars they will gather under a single disease label, but they haven’t gotten any closer to determining whether those labels carve nature at its joints, or even how to answer that question. They have yet to figure out just exactly what a mental illness is, or how to decide if a particular kind of suffering qualifies. The DSM instructs users to determine not only that a patient has the symptoms listed in the book (or, as psychiatrists like to put it, that they meet the criteria), but that the symptoms are “clinically significant.” But the book doesn’t define that term, and most psychiatrists have decided to stop fighting about it in favor of an I-know-it-when-I-see-it definition (or saying that the mere fact that someone makes an appointment is evidence of clinical significance). Instead, they argue over which mental illnesses should be admitted to the DSM and which symptoms define them, as if reconfiguring the map will somehow answer the question of whether the territory is theirs to carve up.
This kind of argument leads to all sorts of interesting drama, but none of it can answer the question I posed about Sandy: Is disease really the best way to understand his craziness? How much of our suffering should we turn over to our doctors—especially our psychiatrists?
I don’t know the answer to that question. But neither do psychiatrists. Even in a case as florid as Sandy’s, they cannot say exactly how they know he has a mental illness, let alone what disorder he has or what treatment it warrants or why the treatment works (if it does), which means that they cannot say why his problem belongs to them. That’s no secret. Any psychiatrist worth his or her salt will freely acknowledge (and frequently bemoan) the absence of blood tests or brain scans or any other technology that can anchor diagnosis in a reality beyond the symptoms. What they are more circumspect about is the disquieting implication of this ignorance: that if a physician wants to claim that drapetomania and homosexuality and, as the DSM-5 has proposed, at one time or another, Hypersexuality and Internet Use Disorder and Binge Eating Disorder are medical illnesses, there is nothing to stop him from doing so and if he is shrewd and lucky and smart enough to persuade his colleagues to follow him, the insurers, the drug companies, the regulators, the lawyers, the judges, and, eventually, the rest of us will have no choice but to go along.
So while the psychiatrists who author the DSM and I share an ignorance about how much of our inner travail should be considered illness, only the psychiatrists have the power to decide, and only the American Psychiatric Association claims those decisions as intellectual property that is theirs to profit from. That’s why I think you should be more disturbed by their ignorance than mine. After all, if the people who write the DSM don’t know which forms of suffering belong in it, and can’t say why, then on what grounds can the next instance in which prejudice and oppression are cloaked in the doctor’s white coat be recognized? Or, to put it more simply, why should we trust them with all the authority they’ve been granted?
This article was excerpted from _The Book of Woe: The DSM and the Unmaking of Psychiatry. Gary Greenberg is a practicing psychotherapist and the author of Manufacturing Depression and The Noble Lie. He has written about the development of the DSM-5 and the intersection of science, politics, and ethics for many publications, including The New York Times, Wired, The New Yorker, Discover, Rolling Stone, Mother Jones, where he is a contributor, and Harper’s, where he is a contributing editor. Dr. Greenberg lives with his family in Connecticut._