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August 6, 2002 - Sara Grayson was as graceful on the slopes as captain of Brandeis University's ski team as she was on the stage captivating audiences in the lead role of the Gilbert and Sullivan operetta, "The Gondoliers." She made life seem easy. She'd spent her junior year in Spain, kept a steady academic pace on the dean's list, joined an a cappella group and had been accepted into a graduate psychology program at Columbia University that was to begin this fall.
But only a few months after graduation from Brandeis, Grayson's charmed life began to crumble. She became deeply depressed, bulimic and suicidal. And on Sept. 24, any hopes for Grayson's future were dashed when she wrote her parents and sister a suicide note, then went into a closet at an outpatient psychiatric residence in Westchester and hanged herself.
Grayson, from Vermont, is one of a growing number of young men and women diagnosed with a baffling and potentially fatal psychiatric condition called borderline personality disorder (BPD). The disease is marked by impulsivity, unstable relationships, outbursts, self-harming behavior and mood disturbances. Until recently, few therapists would take on patients like Grayson because there was no effective treatment, and they feared the patients wouldn't get any better and might even kill themselves. More than 70 percent of these patients engage in self-harming behavior, and one in 10 commits suicide. While the government has sponsored epidemiological studies to assess how common certain mental disorders are in the general population, it was only last year that borderline personality disorder was included. And the results - one to two diagnosed per 100 people questioned - suggest that it is as common as manic-depression and schizophrenia.
Now federal agencies and private organizations are waking up to the seriousness of the illness, according to Dr. Larry Siever, a psychiatrist at Mount Sinai School of Medicine. They're providing funds to study its development, course and treatment in an attempt to understand people who, like Grayson, act on suicidal thoughts. "This is a very serious disease," said Siever, whose brain-scan studies have shown the first hints of a biological abnormality.
But while scientists are beginning to unravel the biology of the disorder, hospital-based treatment programs remain scarce.
"It's a problem," said Dr. John Oldham, former director of the New York State Psychiatric Institute and an expert on personality disorders. Many patients end up going in and out of psychiatric hospitals and emergency rooms. Oldham, who recently moved to the University of South Carolina, says that the patient scars and suicides and advances in understanding the disorder's biology have spurred scientists to wage a war against the condition. Last year the American Psychiatric Association developed practice guidelines, a map for professionals treating these patients, and a flurry of research papers has been published in respected journals.
Borderline patients have long been seen as "difficult" and "manipulative," Oldham said, and hospitals and psychiatrists shy away from taking them on as patients because of the high risk for self-harming behaviors. "But things are rapidly changing," added Oldham, who spoke to a packed audience at the American Psychiatric Association's recent annual meeting in Philadelphia.
The condition was named more than 30 years ago by psychiatrists treating patients who weren't responding to traditional therapies. The term "borderline" was coined because the patients were neither psychotic nor neurotic, Oldham explained, and it seemed that they fell somewhere in between. In recent years doctors and patients have argued that the name doesn't say anything about the nature of the illness.
The new war on borderline personality disorder can be traced to an international research foundation overseen by New York City lawyer Marco Stoffel. The Borderline Personality Disorder Research Foundation has two Nobel laureates on the board of trustees - Rockefeller University's past president, Dr. Torsten N. Wiesel (chairman of the foundation), and Dr. Eric R. Kandel of Columbia University. Dr. Steven E. Hyman, provost of Harvard and former director of the National Institute of Mental Health, is also on the board. The foundation has hosted two scientific meetings in the past year and is coordinating research at six major universities in Europe and America.
In 2000, NIMH devoted 1 percent of its budget to all personality disorders, $5 million of which went to borderline. (Other conditions include antisocial, narcissistic and paranoid personality disorders.) This year, that funding has tripled.
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One of the most promising new treatments, known as DBT, for dialectical behavior therapy, was designed by Marsha Linehan of the University of Washington. Linehan spent decades testing behavioral strategies on people who had attempted suicide several times. DBT focuses on behavior, helping the person change patterns of impulsivity that lead to self-harm.
"It is at its best with suicidal behavior, which is no small thing," Linehan said.
Psychodynamic psychotherapy, a technique designed to rework one's long-held ideas about one's self, one's relationships and environment, has been used for decades without empirical evidence of success. Studies are now under way to test whether it does work.
Weill Cornell Medical College is teaming up with Harvard researchers in a three-year, $3 million study to compare DBT, supportive treatment (following a patient and providing standard talk therapy) and psychodynamic therapy. About 120 patients will be recruited for the study. Siever of Mount Sinai also is conducting brain-scan studies, as are scientists at Yale University.
At Harvard, psychologists will be conducting studies of memory, attention, emotion and personality processes in an attempt to unravel the biology of the illness.
At the New York State Psychiatric Institute in Manhattan, Barbara Stanley has recruited 30 suicidal borderline patients for a five-year study comparing Prozac, DBT, supportive psychotherapy and combination therapies. She decided to focus on borderline patients because they don't fit the typical model of people who try to kill themselves. "They may get suicidal over a breakup of a 1-month-old relationship," Stanley said. Other "people don't understand, and they think they are acting and manipulative. But these people can fall apart real fast and come together quickly."
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Some research suggests that borderline patients have abnormal pain perception, and that cutting or otherwise injuring themselves may trigger brain chemicals that actually make them feel better, according to Dr. Mark Russ of Long Island Jewish Medical Center. He said that on tests at least 50 percent of patients underreport the experience of pain. Brain scans also show that electrical waves are slower in patients who don't seem responsive at normal pain thresholds.
Psychiatrists are even debating whether the borderline condition qualifies as a personality disorder. Many believe it is more akin to mania and depression, which are mood disorders.
"These are patients in an enormous amount of psychic pain," said Dr. John Gunderson, a Harvard Medical School psychiatry professor who directs the outpatient borderline program at the school's McLean Hospital.
The borderline patient has problems balancing emotional life, Gunderson explained. Such a trait could be genetic, though stress in the environment could exacerbate it. Researchers cite growing evidence of the existence of brain systems that regulate the ability to stop doing something harmful or dangerous.
Borderline patients often complain of feelings of emptiness and as a result seek out immediate attachments and become overly dependent, Mount Sinai's Siever said. For decades, such patients would enter long-term in-patient programs to undergo psychodynamic psychotherapy and cycle in and out of the hospital every time their world fell apart.
But such an approach was lost to managed-care cuts, doctors say. Now patients may enter the hospital after a suicide attempt, but doctors say they are released before effective treatment can be determined.
A growing number of doctors is finding outpatient programs more effective, but such programs are in limited supply.
"Patients need to learn how to live in the world, not just in a hospital environment," Linehan said.
"It's not about altering personality but changing behavior," said Dr. Charles Swenson, a Massachusetts psychiatrist who brought DBT to the New York- Presbyterian Hospital's Westchester campus in the early 1990s.
"Over time, I came to believe that we needed to address these behavioral deficits," Swenson recalls. "Patients needed to know what to do when they were angry, ashamed or sad. They needed to know how to act in a relationship - in their personal lives and at work - when things went wrong.
"The idea was to teach patients to stop hurting themselves and to develop a quality of life that was not conducive to suicide."
Copyright (c) 2002, Newsday, Inc.
If you missed our Aug. 24, 2002 HealthyPlace.com Radio Show on borderline personality disorder, go here and listen to it in our archives.
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