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Spring 2010 | Vol 13 No 3

Focus

Fatal flaws

Why therapists don’t want clients with borderline personality disorder

By Patricia Nicholson

Rita Mohan spent years seeking treatment for her daughter Lisa’s borderline personality disorder (BPD). During that time, two health care providers told her that BPD was not a psychiatric condition. Security guards escorted Lisa from a hospital when a doctor accused her of faking symptoms. Eventually, Lisa was greeted with irritation rather than compassion at the emergency room.

“Lisa at her worst was overdosing three times a week and swallowing razor blades and cutting herself,” Mohan says. “The paramedics and the people in emergency got fed up with seeing her. A large part of the reason for the stigma is because the symptoms of BPD are behavioural.”

Lisa’s struggles were dismissed simply as bad behaviour until she was diagnosed with what was considered a legitimate mental illness – bipolar disorder. “As soon as she got the bipolar diagnosis, what a difference it made,” says Mohan, who founded the Ottawa Network for Borderline Personality Disorder, which support families of people with the disorder. “Suddenly people were treating her like she was worthwhile, like she was a human being after all.”

Lisa has since found effective therapy and no longer has symptoms of BPD, but her experience is not uncommon. Mental illness in general is a target of stigma, but BPD is one of the most stigmatized, says Dr. Shelley McMain, clinic head of the Borderline Personality Disorder Clinic at the Centre for Addiction and Mental Health in Toronto. “Part of the reason why there is a dearth of specialized treatment services for people with BPD is the stigma associated with the diagnosis,” she says, adding that BPD is more common than either bipolar disorder or schizophrenia, but that it is not as well-known, nor are there many readily available treatment options.

Contributing to the stigma is the pejorative nature of many of the traditional descriptions of the disorder, for example, “manipulative” and “difficult.” McMain says these negative associations may reflect the lack of resources that health care professionals have had to treat BPD, which wasn’t recognized as a psychiatric condition until 1980. In fact, until about 20 years ago, it was considered untreatable. “People diagnosed with BPD were unpopular with clinicians, in part because having the disorder didn’t seem to relate to the development of a treatment plan,” says McMain.

Even now, symptoms such as self-harm, suicidal behaviour and intense emotions can make treatment a challenge. “Those types of behaviours often evoke anger, frustration or helplessness in health care providers,” McMain says. The negative associations may have contributed to the historical reluctance to treat people with BPD. “However, that has changed dramatically over the past 20 years through considerable progress in understanding and treating BPD,” says McMain.
Not only is BPD treatable; it also has a more optimistic prognosis. Recent long-term research has found that most people with BPD get better. The most promising treatment is dialectical behaviour therapy (DBT), a form of cognitive-behavioural therapy that focuses on helping people move from behavioural dyscontrol to increased control.

“DBT is really changing how people feel about the disorder,” says Perry Hoffman, president of the National Education Alliance for Borderline Personality Disorder (NEA-BPD) in Rye, New York. “It’s effective, not only for the patient, but also for the provider, because you have guidelines to follow.”

Still, long waiting lists remain a serious barrier to care. It doesn’t help that people with BPD are often excluded from other mental health programs and vocational programs because they are viewed as high maintenance, says Hoffman.

Stigma may also explain the lack of researchers and research funding devoted to BPD. “Far fewer people are researching BPD than other psychiatric illness because you lose a lot of sleep at times with patients, worrying about them,” says Hoffman, adding that funding continues to lag behind that for other disorders.

It’s a problem that motivated Hoffman to found NEA-BPD in 2001, with a group of consumers and family members who wanted to build awareness of BPD. The organization hosts conferences and has secured two National Institute of Mental Health grants. “We go down different avenues to build public awareness and to change the perception of the illness,” says Hoffman.

One of those avenues is to make sure new clinicians don’t perpetuate the stigma. NEA-BPD is presenting a workshop specifically for psychiatric residents at this spring’s annual meeting of the American Psychiatric Association. “We have to get involved early in order for new psychiatrists to hear the most current information and research, which will change perceptions about this disorder,” says Hoffman. “It has to start with the psychiatric community because if there’s stigma there, it will mushroom out.”

It might also move inward in the form of internalized stigma. “A lot of people with BPD have trouble with the label,” says Amanda Wang, who has BPD and founded RethinkBPD, which runs a peer-led support group in New York City. “They feel it’s a life-changing disorder, compared to depression or bipolar disorder, because it has the stigma of not being treated well, or of patients being difficult or manipulative. People feel that kind of stigma,” says Wang. She adds that people who come to the support group are often relieved to meet others living with the disorder.

Wang says she has been lucky not to have personally encountered negative attitudes from health care providers. Unfortunately, members of her support group have. RethinkBPD hopes to complete a documentary film that tells people’s stories and challenges the stigma. Says Wang: “People will see first-hand what stigma can actually do to someone’s life, and how it makes it more difficult to get the treatment we need.”