By Melissa Valliant
The truth behind (arguably) the most misunderstood mental illness of our time.
Despite being more common than schizophrenia and bipolar disorder combined, borderline personality disorder remains one of the least understood and most stigmatized mental illnesses.
It’s so misunderstood and stigmatized, in fact, that the press release I received on the subject — which prompted me to write this story — stated, “A topical subject, BPD is featured in the … Sandy Hook school shooting.” The clearly confused PR agency was suggesting that the alleged Sandy Hook shooter, Adam Lanza, suffered from BPD, when, in actuality, there’s never been any reports of him having the condition.
Ryan Lanza, his brother, told ABC News that Adam was autistic, or had Asperger syndrome and “a personality disorder.” There are 10 personality disorders in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, ranging from obsessive-compulsive disorder to narcissistic personality disorder. Ignorant statements like the one made in the press release are part of the reason why society hears “borderline personality disorder” and thinks “violent.” (For the record, people with BPD are no more violent than the general population.)
An estimated 2% of the population has BPD, a type of personality disorder that is characterized by intense and unstable interpersonal relationships, poorly regulated emotions, self-destructive impulsivity and unstable self-image. People with BPD often harbor an intense fear of being abandoned by the ones they love, suffer from chronic feelings of emptiness, engage in suicidal behavior or threats, and have difficulty controlling anger.
“Walking on eggshells” is a common phrase people use to describe what it’s like being around a loved one with BPD. Their emotions undergo rapid changes that they have difficulty controlling, and an innocuous comment can sometimes spark an angry outburst. What they’re feeling can be so intense that — as Dr. Jerold Kreisman and Hal Straus wrote in “Sometimes I Act Crazy: Living with Borderline Personality Disorder” — “some borderlines feel that they will literally explode if they cannot in some way discharge this agitation.”
This discomfort can lead borderlines to self-mutilate, which sometimes provides them with a sense of release. Or they may engage in some other type of impulsive, self-destructive behavior, like spending, sex, substance abuse, reckless driving or binge eating. About 8% to 10% of BPD patients commit suicide.
Their unstable emotions, like all BPD symptoms, are a result of a psychiatric illness that stems from neurological imbalances and environmental factors. For example, Kreisman and Straus wrote that people with BPD appear to have been born with a hyperreactive fear system, or their fear system became hyperreactive in response to early fear-provoking trauma, or both. This could explain some of the emotional outbursts that seem disproportionate to the provocation.
Dr. Perry D. Hoffman, president and co-founder of the National Education Alliance for Borderline Personality Disorder, explained one of the defining aspects of the disorder in an exclusive interview with HellaWella: “It occurs in the context of relationships. Unlike other psychiatric diagnoses, if you put someone with schizophrenia on an island all by themselves, their mental illness would still be evident. If you put someone with BPD on an island, you wouldn’t necessarily see the symptoms — whatever happens, happens in the context of [interacting] with someone else.”
An oft misdiagnosed disorder
Unfortunately, BPD is frequently overlooked or misdiagnosed — all too often as bipolar disorder due to the fact that both conditions involve mood instability. “The difference,” Hoffman said, “is that in bipolar disorder, the mood instability is caused by a pattern of sleep disturbance and then a high level of energy. With people with [BPD], you can track the mood instability to occurring around some incident that occurred in the relationship.”
Additionally, the mood swings in people with bipolar and people with BPD typically differ in duration. “[Bipolar] highs or lows might last for weeks or months,” Hoffman stated. “In someone with borderline personality disorder, the highs and lows can change over dinner.”
“[Bipolar] highs or lows might last for weeks or months. In someone with borderline personality disorder, the highs and lows can change over dinner.”
To confuse things further, people with BPD also usually suffer from additional mental illnesses. Major depressive disorder occurs in more than 80% of people with BPD; anxiety disorders occur in about 90%; PTSD in 26%; bulimia in 26%; anorexia nervosa in 21%; and bipolar in 10%. And then there’s substance abuse. One study found that two-thirds of BPD patients seriously abused alcohol, street drugs and/or prescribed drugs — Dr. Robert Friedel explained in “Borderline Personality Disorder Demystified” that many report they do this to temporarily relieve severe emotional pain.
Why the stigma?
Like the example I gave at the beginning of this article, the lack of awareness surrounding BPD is partly to blame for the myriad myths that have been floating around for decades and its bad rep — people often assume borderlines are violent, manipulative or just generally bad people.
One of the possible causes of the misconceptions is the name. Not only does it sound confusing, but a simple Google search can produce misleading terms like “borderline schizophrenia.” (There’s no association between BPD and schizophrenia.
Hoffman believes another reason there’s a negative stigma is because the disorder happens in the context of relationships. People with BPD, as I’ve mentioned, tend to have very unstable and intense relationships, and their fear of abandonment can spark behavior that negatively affects the ones they love.
Hoffman provided the perfect example: “I worked with a woman many years ago who would call her mother about 10 times a day at work. And her mother just couldn’t maintain a job with that kind of interaction. So when she found a new job, she didn’t give her daughter her phone number,” Hoffman said. “You can see how this plays back and forth in the relationship because not getting her mother’s phone number also increased her fears of abandonment.”
What society needs to understand, though, is that these people are sick. Their symptoms and behaviors are indications of a psychiatric disorder, and they need treatment. “We have to educate the public on what the disorder is, that the symptoms represent someone suffering and in pain,” Hoffman said.
In the past few years, celebrities like Demi Lovato and Catherine Zeta-Jones have bravely opened up about their own struggles with bipolar disorder. Despite the fact that BPD is even more prevalent, no one’s uttering a word about it.
“When you see some of these young celebrities who are going in and out of [rehab], I think if we were to have a psychiatrist do an in-depth evaluation, we might see that there’s some borderline traits there, if not the illness,” Hoffman suggested. “But it’s interesting that nobody comes out saying, ‘I have borderline personality disorder.’ Marsha Linehan, [the psychologist who developed dialectical behavior therapy, one of the first effective treatments for BPD], has taken the first step of doing that, but you’re not seeing anybody else, which adds to the stigma, because nobody is trying to educate the public.”
A treatable condition
Not long ago, experts in the field of psychology believed BPD to be an untreatable illness, and therapists even refused to accept patients with the diagnosis. Then, in the 1970s, Linehan introduced a revolutionary treatment called dialectical behavior therapy, a cognitive-behavioral treatment that emphasizes a strong and equal relationship between patient and therapist.
Marsha Linehan developed dialectical behavior therapy, one of the first effective treatments for BPD.
According to the National Institute of Mental Health, the therapist uses a “philosophic exercise in which two opposing views are discussed until a logical blending or balance of the two extremes — the middle way — is found.” The therapist acknowledges the patient’s behavior and feelings, assuring her that they’re understandable, while at the same time coaching the patient to change unhealthy or disruptive behavior.
Other types of treatment for BPD include transference-focused psychotherapy, STEPPS, schema-focused therapy, supportive psychotherapy and mentalization-based therapy. However, as Hoffman explained, “DBT is the most sought-after, most available and most researched.” And it’s been shown to be effective — one study showed that 75% of borderlines treated with DBT improved after a year, and 95% of patients improved after two years.
Seventy-five percent of borderlines treated with DBT improved after a year, and 95% of patients improved after two years.
There currently is no FDA-approved medication for BPD, and so patients with the condition are usually treated with medication that targets their co-occurring disorders, such as depression, anxiety and eating disorders. Thus, people with BPD are often given antidepressants and anti-anxiety medication, and sometimes they’re treated with mood stabilizers to reduce the abrupt fluctuations in mood.
Medications commonly prescribed to BPD patients include selective serotonin reuptake inhibitors, such as Prozac and Lexapro; or serotonin-norepinephrine reuptake inhibitors, such as Effexor. Multiple studies have linked decreased serotonin activity with impulsive aggressiveness and depression in people with BPD, according to Kreisman and Straus, so patients who strongly exhibit those symptoms respond most positively to SSRIs.
Most people with BPD do get better
A 2010 study by Mary Zanarini and her colleagues followed approximately 300 former inpatients with BPD for 10 years, interviewing them at two-year intervals to assess the severity of their illness and determine whether or not they had improved. The results: Nearly seven out of every eight patients achieved symptom remission lasting at least four years, and half no longer met the criteria for borderline personality disorder.
“People with BPD can get out of the mental health system,” Hoffman said. “It’s not a lifelong diagnosis.”
One of the problems that’s plagued the treatment of BPD and reduced its potential to be effective is the fact many therapists overlook the disorder and instead focus on its comorbid conditions, such as depression, anxiety, eating disorders or substance abuse. But “the borderline personality disorder is the engine that’s driving the patient difficulties,” Hoffman explained. “And if that is not addressed, then it’s less likely that the other co-occurring disorders will remit.”
Despite the obstacles and challenges, recovering from BPD is very possible, even likely, based on the stats I mentioned earlier. The patient has to realize, though, that even with medication, recovery is a tough process that requires hard work and change. As Friedel wrote in “Borderline Personality Disorder Demystified,” “patience and persistence are crucial to your success, and these behaviors are usually not strong points in people with BPD. However, they can be developed, especially with the proper help, and as you achieve small and large successes, failures become less common.”
If you’re interested in learning more about borderline personality disorder, check out these books:
“Understanding and Treating Borderline Personality Disorder: A Guide for Professionals and Families,” edited by John G. Gunderson and Perry D. Hoffman
“Borderline Personality Disorder Demystified,” by Robert O. Friedel
“Sometimes I Act Crazy: Living with Borderline Personality Disorder,” by Jerold J. Kreisman, MD, and Hal Straus
“Get Me Out of Here: My Recovery with Borderline Personality Disorder,” by Rachel Reiland
Particularly helpful for families: “The High-Conflict Couple: A Dialectical Behavior Therapy Guide to Finding Peace, Intimacy and Validation,” by Alan Fruzzetti and Marsha Linehan
BPD is difficult not just for the patient but also for family and friends. The National Education Alliance for Borderline Personality Disorder offers a 12-week course for family members called Family Connections. It’s available in 16 countries, including the United States, and can be taken in person.
For more information on BPD or the Family Connections course, visit BorderlinePersonalityDisorder.com.
The NEABPD also has more than 150 audio and video recordings of past conferences, as well as recordings of a weekly call-in series in which researchers and clinicians do presentations for people who call in. You can also visit their YouTube channel.