Marsha Linehan: Expert on Mental Illness Reveals Her Own Fight NY Times

On Friday, June 17, 2011 I had the honor and privilege to join with family members, friends and many colleagues of Marsha Linehan at the Institute for Living in Hartford, CT to hear a talk entitled, "Succeeding by Failing, the Personal Story Behind DBT."  I wondered why this talk was to be held at the Institute for Living in Hartford Connecticut and  was soon both shocked and awed to learn that this was the place where, in 1960, at 17 years of age, in desperation, Marsha Linehan's parents sent her as "no one  knew what to do for her." Her behavior was out of control. For the next two hours, Marsha related her painful journey, starting with the 2 ½ years she spent at this very mental institution, her experiences with her family, her journey through the mental health system, and how she pulled herself out of pain and found a way to help others that led to the development of Dialectic Behavior Therapy for BPD. Although Marsha had told me many years ago that she had been hospitalized and had received electric shock treatments as a teenager, the extent of the pain, isolation and suffering she had experienced brought me and many others in the room to tears. She certainly made us all understand how, "hospitalization can be iatrogenic."

I could not help but admire the courage and persistence of this brilliant woman who persevered through incredible adversity and created not only a life worth living for herself but brought hundreds of sufferers along the path with her. In midst of her personal suffering, she had made a vow to herself "to get out of hell and then go back and get others out." Remarkably, she has done just that.

Why now? What prompted Marsha to publicly reveal her personal history at this time? In the past, she had feared that revealing her own diagnosis of BPD might undermine her credibility and disparage DBT.  At the present time, DBT can stand on its' own. There are 10,000 trained DBT therapists and enough randomized controlled clinical trials supporting the efficacy of DBT so that Marsha felt it was time to stand up for recovery, to be a model for those suffering with BPD. Her courageous disclosure will be a beacon of hope for BPD sufferers everywhere.

 Marsha grew up in Tulsa, Oklahoma, has 4 brothers and a sister and a stylish mother who was a member of the Tulsa Junior League. In High School, Marsha described herself as obese, having low self esteem and self contempt, a chronic sense of abandonment and feeling she was damaged. She cut herself and smoked three packs of cigarettes a day. In describing her experiences growing up, Marsha shared how she never felt loved or liked. She stated that, "she was not enjoyed and could not get approval from her family. Nobody knew what to do with me or where to send me to get me help." Following the advice of "experts" at the time, her parents sent her to the Institute for Living where this talk took place. When Marsha stated that, "my mother could not attend Valerie Porr's family group," I could not hold back my tears.

In developing a way to help her suicidal patients find the motivation to live, Marsha filtered her ideas through herself, through science and through her clients. Marsha believes that her clients know what they need. Our task is to give them the skills they need. Our clients she said "are homesick." She attributes her own problems to "my biology and my environment," the biology of her regulation disorder and to her invalidating social environment. She realized she and her clients have extreme sensitivity to rejection and invalidation, making change untenable while their extreme suffering made acceptance untenable.

Marsha attributes her ability to overcome her suffering to Radical Acceptance. "Understanding of pain does not tell you what to do. Practicing Radical Acceptance over time is transformative. DBT is a synthesis of radical acceptance and change. She stated that we must radically accept the past, the present and the limitations of the future. "We have to accept in order to change." She advised, "If you are a tulip, don't try to be a rose. Find a tulip garden. Find the environment that you will fit into, that will appreciate you".  She described how she learned to live an "anti depressant life" by creating the things she needed in her own life, her adopted daughter, their dog, her meaningful work, and her devoted colleagues. Sadly, she advised, "the person you love and give care to may simply not be able to say thank you. We cannot demand thanks, we cannot demand immediate results."

"Never doubt love," she said. "Love will transform them in the end." Marsha described her spiritual journey, emphasizing the role of her belief in God, (she is a devout Catholic) and her study of Zen Buddhism that guided her to the philosophy of acceptance and influenced her recovery. Perhaps loving is just as important as being loved, perhaps giving can be a substitute for being cherished.  Suffering can be balanced by giving. If you can't live for yourself, live for others. Giving can distract us from our own problems.   Marsha attributes her survival and her success to her brains, her ability to think outside the box, her persistence and her passion.We are all grateful to Marsha Linehan for her dedication, her perseverance and her passion to help those of us dealing with BPD in one way or another

Borderline personality disorder grows as healthcare concern

By SHARI ROANLOS ANGELES TIMES STAFF WRITER

They have the thinnest skin, the shortest fuses and take the hardest knocks. In psychiatrists' offices, they have long been viewed as among the most challenging patients to treat.

They are the kind of people who drive a friend away for interfering and subsequently berate that friend for abandonment.

For The RecordLos Angeles Times Wednesday, September 09, 2009 Home Edition Main News Part A Page 4 National Desk 1 inches; 37 words Type of Material: CorrectionBorderline personality disorder: An article on borderline personality disorder in Monday's Health section contained a reference to the National Alliance for the Mentally Ill. The patient advocacy organization is now called the National Alliance on Mental Illness.For The RecordLos Angeles Times Monday, September 14, 2009 Home Edition Health Part E Page 9 Features Desk 1 inches; 39 words Type of Material: CorrectionBorderline personality disorder: An article on borderline personality disorder in the Sept. 7 Health section contained a reference to the National Alliance for the Mentally Ill. The patient advocacy organization is now called the National Alliance on Mental Illness.

But almost 20 years after the designation of borderline personality disorder as a recognized mental health condition, some understanding and hope have surfaced for people with the condition and their families.

Borderline personality disorder was center stage in May at the annual meeting of the American Psychiatric Assn. -- with multiple sessions and speakers devoted to the topic. And the message from the meeting was clear: After years during which they threw up their hands, leaders in psychiatry now want to convey a more positive message about the condition and what can be done to help those who have it.

 

"Borderline personality disorder is considered a pejorative term," says Dr. Richard G. Hersh, a psychiatrist at Columbia University's College of Physicians and Surgeons. "But there are new treatments and new data that give reason for optimism."

That is especially significant given results of a survey of more than 24,000 adults, conducted by the federal government and released last year, that found a lifetime prevalence of borderline personality disorder to be almost 6% -- more than double previous estimates.

"The public and patients want to learn more about this condition, and more doctors want to treat it," says Valerie Porr, founder of a national advocacy group called TARA, Association for Personality Disorders.

Messy relationships

"You look back now and see things," says Patricia Green, the mother of a 25-year-old woman diagnosed with borderline personality disorder.

As a child, Sooki (a pseudonym) was sensitive and easily rattled. In high school, she had such difficulty making friends that she opted for home schooling.

After high school, the real trouble began. She had a series of turbulent relationships; was fired from jobs and racked up serious credit card debt. She began cutting herself and was diagnosed with depression.

Patricia, a school nurse in San Diego, attended a workshop on borderline personality disorder six years ago and left suspecting her daughter had it. The description seemed to fit Sooki to a T.

"Suddenly, all the things about Sooki that didn't seem to be related were all under one umbrella," Patricia says.

As in the case of Sooki, people with the disorder make a mess of their relationships -- and no wonder, given the hallmark symptoms: mood instability, fear of abandonment, impulsive behavior, anger and suicidal or self-injurious acts. People with the disorder may misperceive the actions -- even the facial expressions -- of others.

"You can't regulate your emotions despite your best efforts," says Marsha Linehan, a University of Washington psychologist and leading expert on the disorder.

Borderline personality disorder occurs equally as often in men and women and sufferers often also have other mental illnesses or substance abuse problems. The composite of an angry, unstable, clingy, substance abuser is not a pretty one, and people with the disorder suffer greatly because they drive away even the people who love them most, experts say.

"Having a relative with BPD can be hell," says Perry D. Hoffman, president of the National Education Alliance for BPD. "But our message to families is to please stay the course with your relative because it's crucial to their well being."

One of the most significant developments for those affected by the disorder has been the emergence of a strong family and patient advocacy movement pressing for more research and establishing support networks and treatment referral services. Porr started TARA in 1995; Hoffman launched her organization in 2001. In 2007, the National Alliance for the Mentally Ill, a patient advocacy group, put borderline personality disorder on its list of "priority populations" for public policy efforts.

The National Institute of Mental Health, along with the nonprofit advocacy groups and major medical institutions such as UCLA and the Mount Sinai School of Medicine in New York have convened national and regional conferences on the disorder.

Roots in childhood

The flurry of research on borderline personality disorder is casting the condition in a new light. Originally, the behavior was blamed on abuse, trauma or neglect in childhood. But newer research suggests that people with the disorder are born with the predisposition to be emotionally sensitive. Abuse puts a person at higher risk for borderline personality disorder but not everyone who develops it is abused or neglected.

"Parents commonly say, my kid has not been normal since he or she was born," says Dr. Marianne Goodman, a psychiatrist at Mount Sinai School of Medicine in New York.

In a study presented at the American Psychiatric Assn. meeting, Goodman found signs of emotional sensitivity in young children who were later diagnosed with borderline personality disorder. Via a Web questionnaire, Goodman collected data from parents on 234 people with the disorder and 87 unaffected siblings.

She found that as infants, the children who were later diagnosed with borderline personality disorder tended to be self-soothing -- they sucked their thumbs or had attachments to objects, such as a blanket -- compared to unaffected siblings. They were also more sensitive, had excessive separation anxiety and were moodier. They had social delays in preschool and many more interpersonal issues in grade school, such as few friends and more conflicts with peers and authorities.

As teenagers they were more promiscuous, aggressive and impulsive, and more likely to use drugs and alcohol. Cutting and suicide became common.

"Children are really starting to look so different at that point," Goodman says.

Other research shows that, by their 20s, people with the disorder are almost five times more likely to be hospitalized for suicidal behavior compared to people with major depression.

Research on the brains of people with the disorder suggest there is a biological predisposition to the core symptoms of emotional sensitivity and misperceiving the actions and feelings of others.

For example, a study published in 2008 in Science showed different patterns of brain activity in people with the disorder: The scans showed abnormal responses in a brain region called the bilateral anterior insula when borderline personality patients played a game with other people that tested their sense of fairness and social norms.

Through such studies, experts say, it is becoming clearer that the condition may simply be a type of personality that some people enter the world with. Some describe that mind state as a "pervasive emotional dysregulation" -- a brain that is primed to overreact.

"I don't think you can learn to be borderline," Linehan says. "They are intensely emotional people. The sensitivity to emotion is probably there at the beginning."

 

By emphasizing a biological tendency to the behavior, therapists and family members say they hope to soften the perception of the borderline patient as willfully manipulative and argumentative.

"BPD is very popular in terms of literature, the media and movies," says Dr. Josepha A. Cheong, the 2009 chairwoman of the American Psychiatric Assn.'s scientific program committee. But it often gets bad -- and inaccurate -- press in such media, she adds.

One of the most prominent portrayals is the maniacal stalker played by actress Glenn Close in the movie "Fatal Attraction." A more accurate portrayal, Cheong suggests, would be the character of Jenny in the movie "Forrest Gump," who was a somewhat sympathetic but self-destructive, dysfunctional woman who wanted a normal life but couldn't achieve it.

"It's a far more compassionate portrait," Cheong says. "It hints at the suffering of the patient."

Toward treatment

Future progress in helping people with borderline personality disorder, however, may rest on the willingness of therapists to recognize it and apply therapies that are specific to the condition. One study of 70 patients presented at the American Psychiatric Assn. meeting found that 34% had been given a wrong diagnosis before finally being identified with borderline personality disorder.

The study also found that 74% of people who met the criteria for the disorder had never been diagnosed with the condition despite an average of more than 10 years since their first encounter with a psychiatrist.

The correct diagnosis is key because specific behavior-change therapies seem to work best (see related story.)

There are several helpful therapies, experts say, notably dialectical behavioral therapy, and all share common elements. The bond between the patient and therapist is strong -- important for a long-term, therapeutic relationship. And the therapy focuses on the present rather than the past, on changing one's behavior patterns now regardless of how patients feel about the past or if they see themselves as victims.

After Sooki's diagnosis, her mother Patricia began to change the way she communicated with her daughter by remembering that Sooki is ultra-sensitive and easily misperceives others' feelings.

Sooki began seeing a therapist who specialized in borderline personality disorder. She attended group support meetings, took medication for depression and began to exercise to battle her depression in a positive way. She is now in a healthy relationship with an understanding, supportive boyfriend, her mother says, and is taking college classes.

She doesn't yet tell people she has borderline personality disorder because, she says, few people understand what it is.

But, recently, she has started telling the truth about the scars on her arms. "The scars from my cutting are a reminder of how bad things were," she says.

"For so long I felt like an outsider looking in. I hated myself, she adds. "I've really improved and I think each year will get better."

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