Since the 1980s, when I first made public my concerns about psychiatric diagnosis, I have heard from hundreds of people who have been arbitrarily slapped with a psychiatric label and are struggling because of it. About half of all Americans get a psychiatric diagnosis in their lifetimes. Receiving any of the 374 psychiatric labels — from nicotine dependence disorder to schizophrenia — can cost anyone their health insurance, job, custody of their children, or right to make their own medical and legal decisions. And if patients take psychiatric drugs, they risk developing physical disorders such as diabetes, heart problems, weight gain and other serious conditions. In light of the subjectivity of these diagnoses and the harm they can cause, we should be extremely skeptical of them.
Psychiatric diagnosis is unregulated, so the doctor who met briefly with the aforementioned patient wasn’t required to spend much time understanding what caused her heart to race or to seek another doctor’s opinion. If he had, the patient would have realized that her bipolar diagnosis wasn’t necessary or appropriate. Neither on her ER trip nor in later visits to therapists did anyone explain how sleep deprivation impairs the body’s ability to handle pressure.
In our increasingly psychiatrized world, the first course is often to classify anything but routine happiness as a mental disorder, assume it is based on a broken brain or a chemical imbalance, and prescribe drugs or hospitalization; even electroshock is still performed.
According to the psychiatrists’ bible, the Diagnostic and Statistical Manual of Mental Disorders (DSM), which defines the criteria for doling out psychiatric labels, a patient can fall into a bipolar category after having just one “manic” episode lasting a week or less. Given what this patient was dealing with, it is not surprising that she was talking quickly, had racing thoughts, was easily distracted and was intensely focused on certain goals (i.e. caring for her family) — thus meeting the requisite four of the eight criteria for a bipolar diagnosis.
When a social worker in the psychiatric ward advised the patient to go on permanent disability, concluding that her bipolar disorder would make it too hard to work, the patient did as the expert suggested. She also took a neuroleptic drug, Seroquel, that the doctor said would fix her mental illness.
Over the next 10 months, the woman lost her friends, who attributed her normal mood changes to her alleged disorder. Her self-confidence plummeted; her marriage fell apart. She moved halfway across the country to find a place where, on her dwindling savings, she and her son could afford to live. But she was isolated and unhappy. Because of the drug she took for only six weeks, she now, more than three years later, has an eye condition that could destroy her vision.
This patient is well-educated and white, and before her illness, she was wealthy. Research reflects that she was more likely to be diagnosed as mentally ill than a man in her circumstances. Racism, classism, ageism and homophobia can also affect who receives a psychiatric diagnosis.
It would be less troubling if such diagnoses helped patients, but getting a label often hinders recovery. It can lead a therapist to focus on narrow checklists of symptoms, with little consideration for what is causing the patient’s suffering.
The marketing of the DSM has been so effective that few people — even therapists — realize that psychiatrists rarely agree about how to label the same patient. As a clinical and research psychologist who served on (and resigned from) two committees that wrote the current edition of the DSM, I used to believe that the manual was scientific and that it helped patients and therapists. But after seeing its editors using poor-quality studies to support categories they wanted to include and ignoring or distorting high-quality research, I now believe that the DSM should be thrown out.
An undeserved aura of scientific precision surrounds the manual: It has “statistical” in its title and includes a precise-seeming three- to five-digit codefor every diagnostic category and subcategory, as well as lists of symptoms a patient must have to receive a diagnosis. But what it does is simply connect certain dots, or symptoms — such as sadness, fear or insomnia — to construct diagnostic categories that lack scientific grounding. Many therapists see patients through the DSM prism, trying to shoehorn a human being into a category.
At a convention in Philadelphia starting May 5, the DSM’s publisher, the American Psychiatric Association, is due to vote on whether to send the manual’s next edition, the DSM-5, to press. The APA is a lobbying group for its members, not an organization with patients’ interests as its top priority. It has earned $100 million from sales of the current edition, the DSM-IV.
Allen Frances, lead editor of the current DSM, defends his manual as grounded in science, but at times he has acknowledged its lack of scientific rigor and the overdiagnosing that has followed. “Our net was cast too wide,” Frances wrote in a 2010 Los Angeles Times op-ed, referring to the explosion of diagnoses that led to “false ‘epidemics’ ” of attention deficit disorder, autism and childhood bipolar disorder. The current manual, released in 1994, he wrote, “captured many ‘patients’ who might have been far better off never entering the mental health system.”
Frances has even said that “there is no definition of a mental disorder. . . . These concepts are virtually impossible to define precisely.”
Mental health professionals should use, and patients should insist on, what does work: not snap-judgment diagnoses, but instead listening to patients respectfully to understand their suffering — and help them find more natural ways of healing. Exercise, good nutrition, meditation and human connection are often more effective — and less risky — than drugs or electroshock.
Patients should not be limited in their choices of treatment, but they should be better informed. If someone knows about the many ways that suffering can be addressed, including a drug or a treatment with potential benefits and harms, and they still want to try it, they should be able to.
While patients who think they have been harmed by a diagnosis can file a lawsuit or a complaint with a state licensing body, that almost never happens. However, this weekend marks a big change, as some people are speaking up: About 10 people who received diagnoses from the current DSM edition are filing complaints against the manual’s editors. (I have worked with the patients to prepare their complaints, and I’m filing my own as a concerned clinician.)
The complainants allege that the DSM’s editors failed to follow the APA’s ethical principles, which include taking account of scientific knowledge and respecting patients’ welfare and dignity. They are asking the APA to order the editors to redress the harm done to them — or in one case, to a deceased relative — and to anyone else hurt by receiving a label. They want the APA to hold a public hearing about the dangers of psychiatric diagnosis to gather information about the extent of the damage and look for ways to minimize it. Additionally, they are asking the APA to make clear to therapists and to the public that psychiatric diagnoses are not scientific and that they often put patients at risk.
As the patient labeled as bipolar told me: “If I had never been diagnosed, I probably would still be married, would live close to family and friends and not be so lonely, and would not be living on the financial edge.”
Paula J. Caplan, a clinical and research psychologist, is a fellow in the Women in Public Policy Program at Harvard’s Kennedy School of Government. She is the author of “They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal.”
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