The meaning of mental illness

THE DIAGNOSTIC and Statistical Manual of Mental Disorders, universally known as the DSM, has for the past six decades defined "normal" by providing categories for "abnormal." Although it has changed dramatically in its content and method, it has been maintained by its publisher, the American Psychiatric Association (APA), as a lucrative monopoly on psychiatric "nosology"--or the classification of diseases and disorders.

The DSM purports to be wholly scientific, and the APA would like it to inspire confidence that diagnosis in psychiatry is just as reliable as in any other branch of medicine. The existence of the DSM, however, belies that pretension.

Unlike the bubonic plague or diabetes, there are no lab tests for mental disorder. There isn't even a consensus on what the term "mental disorder" actually means. Diagnosis is made by identifying symptoms observed or reported, and the psychiatrists who oversee the periodic revision of the DSM have to make decisions about how to describe and group symptoms.

Then they have to decide how rigorously to apply them. How many symptoms of schizophrenia must be present, how severe must they be and how long must they have been present? When does mild neurocognitive disorder become major neurocognitive disorder?

The DSM provides the structure for diagnosis, and the requirement imposed by insurance companies that specific diagnoses be reported compels mental health clinicians to use that structure.

The fifth edition of the DSM--the DSM-5--went to print earlier this year, after a prolonged and contentious process of revising the DSM-IV. (The APA abandoned Roman numerals in favor of Arabic in order to make it easier to name revisions – 5.1, 5.2, etc.)

The APA's own promotional material contradicts its insistence that the DSM-5 is a distillation of hard science. It touts its inclusive process and brags about its extensive consultation of clinicians, patient groups and other stakeholders.

It implemented a badly needed process of beginning to wean itself off subsidies from the pharmaceuticals, and forced people participating in the revision to disclose whether they were on the payroll of any pharmaceutical company, and if so, for how much. These acts of contrition for public consumption don't seem like the characteristics of a pure scientific research process, and the APA's need to protect its brand by stressing its inclusiveness is a tacit admission that revising the DSM is at least as political as it is evidence-based.

POLITICS HAS always been a part of the DSM. Most people are aware that the DSM classified homosexuality as a mental disorder from 1952 until 1973. It abandoned that position not because it suddenly realized it had gotten the science wrong, but because gay rights activists started picketing its conferences, gay psychiatrists began fighting from within the profession, and the APA decided that protecting the DSM monopoly required dropping homosexuality as a disorder.

More recently, there was controversy over Gender Identity Disorder (GID), which was defined in the DSM-IV as "strong and persistent cross-gender identification" and "persistent discomfort with his or her sex or sense of inappropriateness in the gender role of that sex." In other words, the pathology is not the imposition of gender identity and "gender role"--whatever that means--on an individual; it is that individual's refusal to accept what has been imposed. Critics demanded that GID be dropped from the DSM-5.

The power of the DSM is illustrated by the fact that opposition to dropping the GID diagnosis came from many trans people. Why? Because for those who want reassignment, coverage for the procedures would be virtually unobtainable if the insurance forms did not contain a diagnostic code indicating that the patient had a disorder that was being fixed.

Similarly, if people needed therapy because of the relentless oppression they experience as trans individuals, it would be unavailable without a diagnostic code. No sickness, no coverage. For some, the cost of being pathologized in the DSM may be lower than the cost of being excluded.

The DSM-5 compromised--it now includes Gender Dysphoria, "a marked incongruence between one's experienced/expressed gender and assigned gender," with associated distress and impairment in social or occupational life. The similarities seem more striking than the differences--the sickness is not the oppression of trans people, but their unhappiness about that oppression.

The DSM-5 process was particularly contested because critics of the profession demanded that a number of trends be addressed. These include "diagnostic inflation," the incredible growth in the incidence rates of certain disorders, including Attention Deficit/Hyperactivity Disorder, Bipolar II and autism.

Related to this is the explosion in use of psychiatric drugs for children and for people with "mild" psychiatric diagnoses, people often described as the "worried well."

TWO RECENT books document the campaign critics waged to address flaws in the process that--in their opinion--made the DSM-5 a step backward. In The Book of Woe, Gary Greenberg, a psychotherapist, writer and blogger, details the process from the perspective of a non-psychiatrist who is generally skeptical of the validity and necessity of psychiatric classification generally.

Greenberg, in his practice as a self-described "lunch-bucket psychotherapist," is forced to use the DSM codes to ensure that treatment is paid for, but attaches no validity to his diagnoses. He was a public critic of the DSM-5 revision, but also signed up to participate in field clinical trials, so he is both an insider and an outsider.

In Saving Normal, Allen Frances, the psychiatrist who chaired the development of the DSM-IV, takes on the failure of the DSM-5 to learn from the mistakes Frances acknowledges in the DSM-IV.

Frances came out of retirement to fight to prevent what he perceived as a looming disaster in the DSM-5 and thereby "save psychiatry." He is a former insider, and his criticism was met by bitter denunciation from the APA, which essentially accused him of being in league with anti-psychiatry extremists like the Church of Scientology.

He sees saving psychiatry as the same thing as "saving normal"--by which he means tightening up the diagnostic process to prevent massive over-diagnosis of the worried well at the behest of pharmaceuticals and consumer groups. He extols the virtues of good psychiatric classification--"psychiatry done well is a joy forever."

He is also understandably worried about the extreme anti-psychiatry movement, so he threads a line between his criticisms of the APA and his defense of the basic structure of the system.

In Book of Woe, Greenberg raises more fundamental questions about diagnosis. He feels the psychiatric profession relishes the power that comes with the ability to "give a name to suffering." Not only does the selected condition not meaningfully describe the patient or her distress, it's merely a representation of reality, not reality itself.

Unlike a cancer cell or a fragile X chromosome, a psychiatric disorder doesn't exist until it is conceptualized in the DSM, and imposing the label in ways that change patients' lives simply reifies the conceptualization. It's an awesome power that Greenberg is uncomfortable allowing to be monopolized by any professional guild. He describes bringing patients "in on the scam," sometimes inviting them to browse the DSM to help pick a diagnosis, thereby demystifying the process and depriving it of its power to define the patient.

Greenberg's passages about the power of naming are reminiscent of Paulo Freire, who said in Pedagogy of the Oppressed, "To exist, humanly, is to name the world, to change it...Because dialogue is an encounter among women and men who name the world, it must not be a situation where some name on behalf of others. It is an act of creation; it must not serve as a craft instrument for the domination of others."

Greenberg conveys something of what has been surrendered in relegating growing swathes of the population to be defined according to the DSM's diagnostic criteria.

Greenberg's criticisms of the DSM are more directly political than Frances' are. He opens the book by relating a story from 1850, a century before the DSM, when a physician in Louisiana named Samuel Cartwright described a disorder he named drapetomania, which caused Black slaves to run away. An early symptom was unhappiness about being a slave.

The point Greenberg makes is that being dissatisfied with social order and one's place in it is often pathologized because of "invisible prejudices and fallacies," and he relates the attempt to define drapetomania to the pathologizing of gays and contemporary diagnostic practice. Greenberg writes:

Cartwright seems to have intended to serve the interests of slave owners and white supremacists and their economic system...but surely the doctors who insisted that homosexuality was a disease were not all bigots or prudes. Nor are the doctors today who diagnose with Hoarding Disorder people who fill their homes with newspapers and empty pickle jars, but leave undiagnosed those who amass billions of dollars while other people starve, merely toadying to the wealthy.

They don't mean to turn the suffering inflicted by our own peculiar institutions, the depression and anxiety spawned by the displacements of late capitalism and post-modernity, into markets for a criminally avaricious drug industry.

For a book about psychiatric nosology, Greenberg's book is remarkably funny. Unlike Frances, he names names and lampoons the central characters in the DSM-5 drafting process.

There is a chapter describing an APA convention in Hawaii that has a Hunter S. Thompson flair, with Greenberg trying to relieve his boredom by grabbing every clicker within reach to cast votes during a poorly attended interactive session on the DSM diagnostic protocols, then feeling slightly guilty about skewing the results.

He also introduces the critics of the DSM-5 as characters, including Frances, who comes off as more engaging and three-dimensional in Greenberg's book than in his own. They are uneasy allies, and their relationship of mutual respect and differing priorities helps to contrast their perspectives on diagnosis and psychiatry.

BOTH AUTHORS do a good job of addressing the paradox of inadequate or non-existent care for people in desperate need of mental health services, even as resources are dedicated to unnecessary care to serve a market created by "disease-mongering" pharmaceutical advertisements and other efforts to generate profits by catering to the worried well.

The difference is that Frances believes that the psychiatric profession--and indeed the DSM--is capable of correcting the system with a renewal of ethical standards and practice guidelines, better and more rigorous diagnostic criteria, and tight regulation of pharmaceutical companies.

Greenberg doesn't have nearly as much faith that the market forces that created the current feast and famine in the mental health system can be defeated by tweaking the DSM and regulating the drug companies. He writes:

Their purpose in cataloguing our troubles is surely not to turn us into Shrink McNuggets. But they are in the grips of forces bigger than they are, bigger than any of us. It's not their fault that medicine is a service industry, that diseases are market opportunities, and that a book of them is worth its weight in gold.

Greenberg calls for "an honest psychiatry," one that doesn't pretend to know what psychiatrists can't know. He believes that the fiction that psychiatry can name human suffering and thereby claim to understand it is largely responsible for the state of mental health care. He explains:

[W]e have placed our well-being in the not-so-invisible hands of a medical-industrial complex whose proprietors have a stake in reducing suffering to biochemistry. It has spawned a psychiatry that can't help but give us more and more diseases, at least not if it wants to meet the economic, if not the scientific, demands of the day.

Greenberg argues that psychiatric classification is really about the allocation of resources, writing:

[T]here is one definition of mental disorder that is not bullshit. Mental disorder...is suffering that a society devotes resources to relieving. The line between sickness and health, mental and physical is not biological but social and economic. It is the line between the distress for which we will provide sympathy and money and access to treatment, and the distress for which we will not.

Book of Woe and, to a lesser extent, Saving Normal add to our understanding of how market forces engage science to develop new markets and steer mental health treatment in the most profitable directions.

Book of Woe is the more important book, though, because it helps us to envision mental health services not dominated by a diagnostic monopoly used to allocate or misallocate resources. To return to Freire's concept of dialogue, it would be one where the naming of suffering is not "a craft instrument of domination."