Long Time Coming

A Brief History of BPD Awareness (or Lack Thereof)

Borderline Personality Disorder is a highly prevalent mental health condition conservatively estimated to affect 1.6% of the population at any given time. Despite being so widespread, BPD has been poorly understood, frequently misdiagnosed, ineffectively treated and unfairly stigmatized for a long time. 

A very long time.

240 A.D.

Nearly two millennia ago, the Greek physician Aretaeus of Cappadocia described the key traits of an emotional disorder he called “melancholic mania”.  Despite the fact that the science of medicine was far more rudimentary at that time than now, he pretty much nailed it:

They are prone to change their mind readily; to become base, mean-spirited, illiberal, and in a little time, perhaps, simple, extravagant, munifiicent, not from any virtue of the soul, but from the changeableness of the disease. But if the illness becomes more urgent, hatred, avoidance of the haunts of men (fixation on someone), vain lamentations (intense self-criticism). They complain of life and desire to die. 

Over the ensuing centuries, the condition Aretaeus first described would be variously labeled as a mood disorder, schizo-affective disorder, hysteria, excitable personality disorder, borderline insanity and several other names. It is ironic that the constant change of name created a more opaque rather than clearer understanding of what we now call Borderline Personality Disorder.

How did the term ‘borderline’ come into use in the first place?

1938

In 1938, American psycho-analyst Adolph Stern described patients who displayed traits of anxiety and depression when overwhelmed by stress, but were able to return to a more normal emotional state in a relatively short time. Stern described this shifting mental state as being “on the border” between neurosis (episodic) and psychosis (permanent). 

Unfortunately, the name stuck.

1952

The American Psychiatric Association Committee on Nomenclature and Statistics was published in 1952 as the first edition of Diagnostic and Statistical Manual, also known as DSM-l. This directory of mental illnesses provided therapists and researchers with detailed diagnostic profiles, It was also the first official manual of serious mental disorders that focused on clinical use.

But Borderline Personality Disorder was not among them.

1968

The second edition of the Diagnostic and Statistical Manual of Mental Disorders, the DSM-II, included 185 diagnoses for mental disorders, an increase from the 106 diagnoses in the first edition, DSM-I. The DSM-II also added a new category - Organic Brain Syndromes, and paid greater attention to mental illness in children and adolescents. But Borderline Personality Disorder was still left out.

1980

In 1980, Borderline Personality Disorder was formally recognized as a mental health condition by the American Psychiatric Association when they included BPD in the Diagnostic and Statistical Manual Version lll. The DSM-III would now include explicit diagnostic requirements for Borderline Personality Disorder- the so-called 9 criteria:

• Fear of abandonment.

• Unstable relationships.

• Unclear or shifting self-image.

• Impulsive, self-destructive behaviors.

• Self-harm.

• Extreme emotional swings.

• Chronic feelings of emptiness.

• Explosive anger.

• Feeling paranoid or out of touch with reality.

If a person met 5 or more of these criteria they could be diagnosed as having BPD.

A secondary positive outcome from the inclusion of Borderline Personality Disorder in the DSM-lll was that it sparked a growing interest in BPD among researchers and clinicians, both experienced, as well as younger, who sought to better understand and treat this troublesome condition. In the subsequent 44 years, the number of BPD therapists, researchers and clinical studies has grown exponentially,

1994

The fourth edition of the Diagnostic and Statistical Manual (DSM-IV) was essentially a slightly revised version of DSM-lll, and included a novel multi-axial system of organizing various categories of mental illnesses and conditions:

• Axis I: Mental Health and Substance Use Disorders.

• Axis II: Personality Disorders and Mental Retardation

• Axis III: General Medical Conditions.

• Axis IV: Psychosocial and Environmental Problems.

• Axis V: Global Assessment of Functioning (GAF) A scale to rate how much a person's symptoms affect their day-to-day life on a scale of 0 to 100.

It was thought this would offer providers and researchers a broader perspective of mental health disorders and able to make more accurate diagnoses, including BPD.

2013

The most recent APA publication- the DSM-V, takes a lifespan perspective recognizing the impact of age and development on the onset, manifestation, and treatment of mental disorders. Other changes in the DSM-5 include the elimination of eliminating the multi-axial system; removing the Global Assessment of Functioning (GAF score); reorganizing the classification of the disorders; and changing how disorders that result from a general medical condition are conceptualized.

The definition of BPD from the revised text edition of the DSM-IV-TR is unchanged, although important modifications have been adopted for DSM-V. In particular, the diagnostic system for personality disorders became a hybrid model, utilizing both categorical diagnoses and a dimensional system based on personality traits. These BPD related traits and symptoms are generally similar to those used in the two previous versions of the DSM.

If you’re interested in learning more about the development and history of the Diagnostic and Statistical Manual, you can find an excellent synopsis here

https://www.psychiatry.org/psychiatrists/practice/dsm/about-dsm/history-of-the-dsm#section_3

A New Voice

One of the most influential agents of change regarding BPD was Dr. Marsha Linehan of the University of Washington in Seattle.  With funding from the National Institutes of Health (NIH) in 1980, she developed a unique treatment protocol for women who were chronic self-harmers and frequent suicide attempters. 

The innovative treatment Dr. Linehan developed, along with the many clinical trials she and others conducted to demonstrate its effectiveness, formed the basis of her landmark book: Cognitive-Behavioral Treatment of Borderline Personality Disorder. *

The book was an immediate success and remains so to this day. In fact, Dialectical Behavior Therapy, also known as DBT, has been described as the ‘gold standard’ for the treatment of BPD. DBT has been found to be helpful in treating several other mental health and medical conditions as well.

DBT may have been a novel therapy, but it quickly became widespread, saving people’s lives and significantly raising awareness of BPD around the world.

* The publisher of Linehan’s book changed the title from Dialectical Behavioral Treatment to Cognitive Behavioral Therapy because of concern that DBT was not yet an established entity in the mental health field.

Greater Awareness

In 2008, the month of May was designated Borderline Personality Disorder Awareness Month by the U.S. House of Representatives, an initiative proposed by the advocacy groups The National Education Alliance for Borderline Personality Disorder (NEABPD) and the National Alliance on Mental Illness (NAMI)

Marsha Linehan Shares Her Life Story

On June 23, 2011, Dr. Linehan made a presentation about the origins of DBT at the Institute of Living (IOL), a psychiatric hospital in Hartford Connecticut.

In that presentation, she revealed to a group of 300 attendees that she was involuntarily committed as a patient to IOL for more than two years as a teenager. Sent there by her family on the recommendation of their local psychiatrist, Marsha became such a disruptive patient that during most of her time there she was either heavily medicated, subjected to repeated electro-shock therapy sessions or locked in supervised isolation for several days.

The emotional despair and pain she experienced was overwhelming. She often sought relief through various acts of self-harm - cutting, burning, and slamming her head into a wall or floor. In desperation and in a semi-conscious state, she asked God to help her get out of her ‘personal hell’ and if she did get out, she vowed she would return to help others escape their own personal hell.

That was the start of her long journey toward understanding and improving her emotional well being. That experience became the framework for Dialectical Behavior Therapy and the ultimate fulfillment of her vow.

Exemplary Advocacy Organizations

There are a number of individuals whose work has raised awareness about BPD, including Marsha Linehan. But bringing greater attention to BPD will happen faster and be more effective when an ‘It takes a village” approach is implemented. By embracing that mission, several grass roots BPD support organizations have developed DBT based initiatives that have had a significant major impact.

Here are a few that we have come to know:

The National Education Alliance for Borderline Personality Disorder, New York

One of the first mental health professionals to be trained in DBT by Dr. Linehan was Dr. Perry Hoffman. Dr. Hoffman thought this set of skills might be helpful in patient recovery if family members impacted by their loved ones BPD were trained to use DBT skills when interacting with them.

That inspired Dr. Hoffman to establish the non-profit National Education Alliance for Borderline Personality Disorder (NEA-BPD) as an educational, advocacy and awareness organization specifically for a range of people impacted by BPD - patients, families, friends and colleagues.

The first NEA-BPD educational program was a collaborative initiative between Perry and Dr. Alan Fruzzetti, a university psychology professor, researcher and clinician who obtained his Ph.D. degree as a graduate student of Dr. Linehan. They named their evidenced based program Family Connections. Their mission was to train family members who completed the program (usually parents) and then have them train other family members about the nature of BPD and how to utilize the social skills of DBT to improve their relationship with the person in their family who has BPD. To date, Family Connections has trained thousands of parents and other people in dozens of countries around the world.

Perry and Alan were also consulting collaborators with us on the comprehensive BPD video series we produced in 2010: If Only We Had Known: A Guide to Borderline Personality Disorder. The five part video series is available for streaming or DVD via our BPDVideo website.

Sadly, Dr. Hoffman passed away in December of 2019. But her groundbreaking advocacy efforts live on through NEA-BPD.

You can learn more about NEA-BPD on their website: www.borderlinepersonalitydisorder.org.

Emotions Matter, Inc., New York City

Emotions Matter, Inc., is a New York City-based not-for-profit organization that has developed a number of innovative and effective BPD support programs for people with lived BPD experience and their families. The group was formed by Paula Tusiani-Eng and is made up primarily of volunteers with personal BPD experience.

Paula’s younger sister lived with BPD and passed away from a severe reaction to a drug prescribed for depression. Paula and her mother Pamela co-authored a book, Remnants of a Life on Paper, that documents that difficult experience and the impact it had on her whole family. The book also inspired Paula to form the BPD advocacy organization Emotions Matter, Inc., to support the many needs of people who struggle with Borderline Personality Disorder.

Emotions Matters offers a wide array of educational programs, in person community events (an awareness walk, art exhibits, open mike nights, writing workshops and other innovative programs and events, both in person and online, that provide a much needed sense of community for people who feel isolated by their BPD. The group also participates in lobbying government agencies to promote legislation that supports the legal rights of people with BPD.

You can learn more about Emotions Matters and their support programs at http://www.emotionsmatterbpd.org

The Sashbear Foundation, Montreal, Canada

In addition to NEA-BPD and Emotions Matter, there is another organization we are familiar with whose advocacy efforts stand out. That is the Sashbear Foundation, based in Montreal, Canada, where former Family Connections group leaders Lynn Courey and her husband Mike Menu established a BPD advocacy organization, The Sashbear Foundation.

Sashbear provides Family Connections training to groups across Canada, in person and online. Sashbear also hosts several BPD themed webinars online with leading BPD researchers and writers and BPD awareness efforts across Canada. One of them is a series of BPD themed walks in Canadian cities from the West Coast to the East Coast, forming a symbolic cross country walk.

Through their founding of The Sashbear Foundation, Lynn and Mike have dedicated their lives to helping people impacted by BPD in honor their daughter Sasha, whom they lost to suicide in 2011.

You can learn more about the Sashbear Foundation and their programs at https://sashbear.org/

Looking Ahead

There was a long interval of time - over 1700 years - between the insights of Aretaeous in 240 AD and the first inclusion of BPD in the DSM lll in 1980 AD.

There has also been a great deal of forward movement that has taken place in the last 44 years. Through the spread of evidence-based therapies, brain imaging technology and improved medication support, once unimaginable advances in understanding the complex nature of Borderline Personality Disorder have been achieved. Today, infinitely more information about BPD - what causes it, how it develops, and how it can be effectively treated, has become widely available. Countless thousands of people around the world have benefitted from that progress.

Marsha Linehan once told me that she thinks while DBT is effective, she is certain that others will find ways to improve on her work. I can only imagine how pleased Dr. Linehan must feel to know her work - mapping a path out of hell that people with BPD can follow to achieve a life worth living - is spreading and will continue to do so. 

Footnote

Reflecting back on BPD Awareness Month, BPD advocacy organizations and our 30 years of producing BPD educational programming, we are extremely grateful for the many opportunities we’ve had to contribute to the effort and to work with the amazing people- patients, families, providers and researchers we’ve come to know along the way.