A Most Misunderstood Illness
Borderline Personality Disorder: A Most Misunderstood Illness
by Perry D. Hoffman, Ph.D.,
President, National Education Alliance for Borderline Personality Disorder
Introduction
by Joyce Burland, Ph.D.
Director, NAMI Education, Training and Peer Support Center
There is perhaps no serious mental illness more maligned and misconstrued than borderline personality disorder. Years ago, when I started my clinical career, I was warned to “stay away from ‘Borderlines’.” Being of a suspicious nature, I began to search out information about this dread diagnosis, which was primarily attached to women, and carried with it such a blatantly stigmatizing reputation. As I began working with people with this disorder, I became aware of the enormous strength and resiliency they brought to the daily struggle of coping with the disruptive symptoms of the condition, and of the patience and loyalty shown by the families who loved and supported them.
Bringing this diagnosis out of the darkness is long overdue. Individuals and families living with the illness deserve current and correct information, and we must all advocate to dispel the myths which have made borderline personality disorder a “leprosy” of psychiatric diagnoses.
As part of the formal inclusion of borderline personality disorder in its list of priority populations in NAMI’s public policy platform, NAMI has invited Perry D. Hoffman, Ph.D., to write the article that follows. She is a pioneer in educating families about this disorder, and a prime mover in forming a collaborative effort with NAMI to increase visibility and understanding of this treatable mental illness.
What is borderline personality disorder?
Borderline personality disorder (BPD) is a complex and challenging illness. A disorder that is often prompted by and occurs in the context of relationships, BPD can wreak havoc not only on those with the disorder but on their loved ones as well. The symptoms of the disorder are: 1. fears of abandonment; 2. intense mood shifts; 3. impulsivity; 4. problems with anger; 5. recurrent suicidal behaviors or self-injurious behaviors; and 6. patterns of unstable and intense relationships. The symptomatology is pervasive, encompassing five areas of dysregulation: emotion dysregulation, behavioral dysregulation, cognitive dysregulation, interpersonal dysregulation and self dysregulation. Those afflicted with borderline symptoms very often experience sudden shifts in emotion that frequently leave both the individual with BPD and those close to them in their environment in a state of intense disruption. To meet official DSM- IV criteria for the disorder, a person must have at least five of the nine symptoms. Needless to say, experiencing even a few of the behaviors can create a life of pain and suffering.
How common is BPD?
The prevalence of BPD in the general population continues to be debated. While estimates variously range from 0.7 percent to 2 percent, there is agreement that 11 percent of people that come for out patient psychiatric treatment and 20 percent of psychiatric hospital admissions meet DSM-IV criteria for this disorder.
Why is BPD so misunderstood?
Borderline personality disorder, historically and even presently, is a disorder that has met with widespread misunderstanding. There are many reasons for the confusion. With the nine possible symptoms there exist over 200 different ways for the disorder to present itself, and this heterogeneity is further complicated by the fact that BPD rarely stands alone. A high rate of co-occurrence exists with other disorders, which typically include major depression, bi-polar disorder, substance abuse, eating disorders, and anxiety disorders.
To compound the problems, unfortunately another diagnosis is often assessed instead, BPD is often missed or ignored. Data indicate, on average, that five years elapse before BPD is accurately diagnosed in a patient. Lastly, medications are often a source of confusion. It is not uncommon for an individual with BPD to be on three, four, five, six or more medications. To date, no one medication has been specifically researched and approved for BPD.
Surplus stigma
Even among other mental illnesses, BPD is surrounded by a phenomenon that maybe termed “surplus stigma.”
Issues that promote stigma and, thus, further the BPD misunderstanding include: 1) theories on the development of the disorder, with a suspect position placed on parents similar to the erstwhile schizophrenogenic-mother concept; 2) frequent refusal by mental health professionals to treat BPD patients; 3) negative and sometimes pejorative web site information that projects hopelessness; and 4) clinical controversies as to whether the diagnosis is a legitimate one, a controversy that leads to the refusal of some insurance companies to accept BPD treatment for reimbursement consideration.
A sense of hope
Over the past decade, various groups have formed to help move the BPD agenda forward and to bring hope to individuals with BPD and their family members. First, the National Institute of Mental Health (NIMH) has worked intensively to augment the focus on BPD research.
Also, the Borderline Personality Disorder Research Foundation (BPDRF), a private foundation, has joined the research effort and provided funding for projects both in the United States and abroad. Further, the National Education Alliance for Borderline Personality Disorder (NEABPD) with support from NIMH and in partnership with local NAMI affiliates, NARSAD and major medical institutions, has convened five national and 14 regional conferences on BPD. To date, it has also hosted a researched-based family program, “Family Connections,” across the country as well outside the United States.
In addition, Treatment and Research Advancements, TARA, located in New York, has made excellent strides in the area of advocacy. And lastly, the BPD Resource Center (BPDRC) provides a free service to callers and has developed and maintains a list of treatment referrals as well as informational brochures on the disorder.
Signs of hope include longitudinal research, done by Mary Zanarini, Ed,D. and colleagues, which includes data documenting that persons with BPD do get better. Most importantly, research findings demonstrate the effectiveness of several treatment modalities. The most prolific, in terms of available literature, and most sought–after, is Dr. Marsha Linehan’s Dialectical Behavior Therapy (DBT).
Next steps
The inclusion of BPD under the NAMI umbrella marks a major turning point in the historical trajectory of this illness, which lags decades behind other mental illnesses in its recognition. It will be a major step in propelling the disorder into its next chapter of development. NAMI plans to prioritize steps in its BPD initiative and set an agenda in the areas of support, education, research, and advocacy.
To help accomplish these first efforts, a session of an invited panel of experts is being held at the NAMI National Office. With financial support from NIMH, this group of stakeholders, which includes family members, clinicians and research scientists, is meeting and providing their perspective to help guide NAMI’s work.
Current research and evidence-based treatments are showing great promise for recovery. The recognition by NAMI of BPD as a major mental illness opens a new way of action to overcome this illness.
Learn more about BPD from NAMI’s Fact Sheet and BPD Resources