“Are you one of us?” the patient asked, and her therapist — Marsha Linehan of the University of Washington, creator of a treatment used worldwide for severely suicidal people — had a ready answer. It was the one she always used to cut the question short, whether a patient asked it hopefully, accusingly or knowingly, having glimpsed the macrame of faded burns, cuts and welts on Linehan’s arms: “You mean, have I suffered?”
“No, Marsha,” the patient replied, in an encounter last spring. “I mean one of us. Like us. Because if you were, it would give all of us so much hope.”
“That did it,” said Linehan, 68, who told her story in public for the first time last week before an audience of friends, family and doctors at the Institute of Living, the Hartford clinic where she was first treated for extreme social withdrawal at age 17. “So many people have begged me to come forward, and I just thought — well, I have to do this. I owe it to them. I cannot die a coward.”
No one knows how many people with severe mental illness live what appear to be normal, successful lives, because such people are not in the habit of announcing themselves. They are too busy juggling responsibilities, paying the bills, studying, raising families — all while weathering gusts of dark emotions or delusions that would quickly overwhelm almost anyone else.
Now, an increasing number of them are risking exposure of their secret, saying that the time is right. The US’ mental health system is a shambles, they say, criminalizing many patients and warehousing some of the most severe in nursing and group homes where they receive care from workers with minimal qualifications.
Moreover, the enduring stigma of mental illness teaches people with a diagnosis to think of themselves as victims, snuffing out the one thing that can motivate them to find treatment — hope.
“There’s a tremendous need to implode the myths of mental illness, to put a face on it, to show people that a diagnosis does not have to lead to a painful and oblique life,” said Elyn Saks, a professor at the University of Southern California School of Law who chronicles her own struggles with schizophrenia in The Center Cannot Hold: My Journey Through Madness. “We who struggle with these disorders can lead full, happy, productive lives, if we have the right resources.”
However, Linehan’s case shows there is no recipe. She was driven by a mission to rescue people who are chronically suicidal, often as a result of borderline personality disorder, an enigmatic condition characterized in part by self-destructive urges.
“I honestly didn’t realize at the time that I was dealing with myself, but I suppose it’s true that I developed a therapy that provides the things I needed for so many years and never got,” she said.
She learned the central tragedy of severe mental illness the hard way, banging her head against the wall of a locked room.
Linehan arrived at the Institute of Living on March 9, 1961, at age 17, and quickly became the sole occupant of the seclusion room on the unit known as Thompson Two, for the most severely ill patients. The staff saw no alternative: The girl attacked herself habitually, burning her wrists with cigarettes, slashing her arms, her legs, her midsection, using any sharp object she could get her hands on.
Doctors gave her a diagnosis of schizophrenia; dosed her with Thorazine, Librium and other powerful drugs, as well as hours of Freudian analysis; and strapped her down for electroshock treatments, 14 shocks the first time through and 16 the second, according to her medical records. Nothing changed, and soon enough the patient was back in seclusion on the locked ward.
“Everyone was terrified of ending up in there,” said Sebern Fisher, a fellow patient who became a close friend.
However, whatever her surroundings, Fisher added: “Marsha was capable of caring a great deal about another person; her passion was as deep as her loneliness.”
A discharge summary, dated May 31, 1963, the day she left, noted that “during 26 months of hospitalization, Miss Linehan was, for a considerable part of this time, one of the most disturbed patients in the hospital.”
“I was in hell,” she said. “And I made a vow: When I get out, I’m going to come back and get others out of here.”
It took years of study in psychology — she earned a doctorate at Loyola in 1971, using money left to her by a family friend — before she found an answer. On the surface, it seemed obvious: She had accepted herself as she was. She had tried to kill herself so many times because the gulf between the person she wanted to be and the person she was left her desperate, hopeless, deeply homesick for a life she would never know. That gulf was real, and unbridgeable.
That basic idea — radical acceptance, she now calls it — became increasingly important as she began working with patients, first at a suicide clinic in Buffalo, New York, and later as a researcher. Yes, real change was possible. The emerging discipline of behaviorism taught that people could learn new behaviors — and that acting differently can in time alter the underlying emotions from the top down.
“I decided to get super-suicidal people, the very worst cases, because I figured these are the most miserable people in the world — they think they’re evil, that they’re bad, bad, bad — and I understood that they weren’t,” she said. “I understood their suffering because I’d been there, in hell, with no idea how to get out.”
In particular, she chose to treat people with a diagnosis that she would have given her young self: borderline personality disorder, a poorly understood condition characterized by neediness, emotional outbursts and self-destructive urges, often leading to cutting or burning. In therapy, borderline patients can be terrors — manipulative, hostile, sometimes ominously mute, and notorious for storming out of sessions threatening suicide.
Linehan found that the tension of acceptance could at least keep people in the room: Patients accept who they are, that they feel the mental squalls of rage, emptiness and anxiety far more intensely than most people do. In turn, the therapist accepts that given all this, cutting, burning and suicide attempts make some sense.
Finally, the therapist elicits a commitment from the patient to change his or her behavior, a verbal pledge in exchange for a chance to live: “Therapy does not work for people who are dead,” is one way she puts it.
Linehan’s own emerging approach to treatment — dialectical behavior therapy (DBT), as it is now called — would also have to include day-to-day skills. A commitment means very little, after all, if people do not have the tools to carry it out. She borrowed some of these from other behavioral therapies and added elements, like opposite action, in which patients act opposite to the way they feel when an emotion is inappropriate; and mindfulness meditation, a Zen technique in which people focus on their breath and observe their emotions come and go without acting on them. (Mindfulness is now a staple of many kinds of psychotherapy.)
In a series of studies through the 1980s and 1990s, researchers at the University of Washington and elsewhere have tracked the progress of hundreds of borderline patients at high risk of suicide who have attended weekly dialectical therapy sessions. Compared with a group of similar patients who got other experts’ treatments, those who learned Linehan’s approach made far fewer suicide attempts, landed in the hospital less often, and were much more likely to stay in treatment. DBT is now widely used for a variety of stubborn clients, including juvenile offenders, people with eating disorders and those with drug addictions.
“I think the reason DBT has made such a splash is that it addresses something that couldn’t be treated before; people were just at a loss when it came to borderline, but I think the reason it has resonated so much with community therapists has a lot to do with Marsha Linehan’s charisma, her ability to connect with clinical people as well as a scientific audience,” said Lisa Onken, chief of the behavioral and integrative treatment branch of the National Institutes of Health.
Most remarkably, perhaps, Linehan has reached a place where she can stand up and tell her story, come what will.
“I’m a very happy person now,” she said in an interview at her house near campus, where she lives with her adopted daughter, Geraldine, and Geraldine’s husband, Nate. “I still have ups and downs, of course, but I think no more than anyone else.”
After her coming-out speech last week, she visited the seclusion room, which has since been converted to a small office.
“Well, look at that, they changed the windows,” she said, holding her palms up. “There’s so much more light.”
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