TARA Association for Personality Disorder

HELPLINE
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BORDERLINE PERSONALITY DISORDER

People With
Borderline Personality Disorder, Suffering in the Shadows

By Valerie Porr, Founder, The Treatment and Research Advancements Association for Personality Disorder

Orginally published April/May 2002, Volume VII, Number 2

Within the New York City mental health community, a group of people remain in the shadows, stigmatized, misdiagnosed, inappropriately treated, misunderstood or ignored. These people suffer from Borderline Personality Disorder (BPD), a severe, painful, persistent, and disabling mental illness. This shadow population generally falls through the treatment cracks, finding little or no relief within the mental health system. Why does the mental health community treat BPD as the "step child?" Why is their suffering generally trivialized and appropriate treatment unavailable in most communities? Why is BPD the recipient of so much professional disregard? Up to now, a lack of advocacy for BPD left sufferers relatively invisible and without a public voice. A public personality has not stepped forward to declare he or she suffers with BPD. The Treatment and Research Advancements Association for Personality Disorder (TARA APD) has become the voice for BPD. We advocate for bringing BPD into the light.

BPD is characterized by problems with relationships, intense, rapid or frequent mood changes, feeling anxious, depressed, sad or empty, fearing abandonment, suffering with depression that often doesn’t respond to medication, love-hate relationships, feeling victimized, frequently self-injuring by cutting or burning and repeated suicide attempts. Sufferers have a very low threshold for stress. Although they often report abuse as children this is not a requirement for the diagnosis. Nor all people with BPD have suffered abuse.

BPD is estimated to affect 2-3% of the general population, 11 °./o of the patients seen in outpatient clinics and as many as 20% of hospitalized psychiatric patients. One in ten people with the disorder commits suicide, usually due to impulsive acts rather than chronic depression. BPD worsens the outcome and complicates the treatment of any co-occuring disorder such as Major Depression or Bipolar Disorder. A major public health burden, BPD is a key factor in substance abuse, domestic violence, gambling, eating disorders (40%), shop lifting, sex addiction, AIDS, homelessness and child abuse. Impulsive aggression, a core symptom of BPD, leads a significant number of sufferers, particularly men, into fights, perpetration of domestic violence (22-35% of DV perpetrators meet criteria for BPD) road rage and ultimately into forensic rather than mental health settings. People with BPD are highly sensitive to rejection and, not surprisingly, account for one out of three stalkers. Many are recipients of SSI and or SSD. Availability of evidence-based treatment in the five boroughs of NYC is minimal or non-existent as is help, support, or psycho-education for family members. The underlying cause of many addictive behaviors (67% of Substance Abusers meet criteria for BPD), BPD may explain the recidivism in substance abuse or alcohol treatment.

Despite their extreme sensitivity and the severe emotional pain they live with, people with BPD seem to others to manifest irritating behavior rather than signs or symptoms associated with other mental illnesses. Generally high functioning, it is not unusual for a person with BPD to graduate from college or become a doctor or lawyer. Princess Diana and Marilyn Monroe were reputed to have suffered with BPD. They had the ability to "be apparently competent" that often leads loved ones and professionals to trivialize their profound suffering and to deny the appropriate recognition or care required by this painful and persistent illness. Professionals generally limit the number of BPD patients in their practice, refuse to treat them at all, or drop them as "treatment resistant." Would a cancer or heart patient who fails to respond to treatment be treated this way? People with BPD seem to lack the ability to relieve the intense emotional pain they are constantly experiencing. Desperate for relief their behavior can best be understood as maladaptive methods, of coping with constant psychic pain.

TARA APD, created m 1995, is the largest national not-for-profit organization dedicated to raising public awareness of BPD, fostering education, family support, and research into the cause and treatment of BPD, ensuring availability of evidence-based treatment and translating research findings into practice. No other national organization wanted to take on the problems of BPD, would embrace these patients looking for relief from acute pain, nor the families trying to help but not knowing how nor the clinicians struggling to treat these patients without effective tools. Sisyphean as the task may be, TARA APD, is the leading advocacy organization for those suffering with BPD.

Latest research demonstrates that patients with BPD are the most extensive users of Mental Health Services including virtually every mode of psychosocial treatment more often and in greater amounts than my other diagnostic group. BPD patients have more complicated and impairing symptoms, more enduring distress and disability, more extensive treatment histories, a relatively higher incidence of psychiatric hospitalization and an extensive, if erratic, use of outpatient mental health services than do patients with major depression. They continue to function at lower levels despite receiving greater amounts of treatment than do depressed patients. Information gathered on the TARA APD HELPLINE indicates that these patients generally receive inadequate or inappropriate treatment in the community. Functional impairment of people with BPD exceeds that of patients with major depressive disorder yet the costs to patients, families and society from BPD are persistently overlooked.

Up to now, the New York City mental health system has failed to recognize that appropriate treatment for BPD patients is cost-effective. The prevalence of BPD is 2-3 times that of schizophrenia (1%) and bipolar disorder (1%.) Its burdensome public health impact due to its extensive well-documented comorbidity with substance abuse, eating disorder, domestic violence and other forms of addiction is not being addressed in NYC. The unavailability of appropriate and effective treatment in NYC constitutes an incomprehensible waste and miscalculation in deploying public funds. Continuation of "step-child" status for BPD bears a high cost for all New Yorkers, creates enormous psychic pain for patients and their loved ones and is tantamount to careless disregard for responsible oversight and expenditure of taxpayer dollars.

Optimum treatment for BPD is s combination of medication and cognitive psychotherapy, Treatment requires a well-informed psychiatrist who will monitor medication dosage and responses, a luxury today's managed care environment doesn't allow. Dialectical Behavioral Therapy (DBT), a method of cognitive behavioral therapy developed by Marsha Linehan, Ph.D., is the optimum evidence-based psychotherapy for people with BPD. Although New Yorkers are most fortunate in having more professionals and treatment programs for BPD than any city in the nation, BPD treatment in the Metropolitan area is only available for about 350 people, woefully inadequate for the approximate 2-3% of New Yorkers or 160,000 people afflicted with this painful and debilitating disorder. The NYC Department of Mental Health, Mental Retardation & Alcoholism Services offers little or no assistance whatsoever to this patient population or to their families. We hope our new Commissioner, Dr. Thomas Freiden will recognize the urgent need to declare BPD a citywide priority.

TARA APD maintains a Helpline (1-888-4-TARA APD) and a NYC Personality Disorder Resource And Referral Clearinghouse. To raise awareness of BPD, we sponsor workshops, symposia and grand rounds and provide family education and support groups. Dr. Linehan trained TARA APD team in DBT resulting in the first family run DBT groups and development of a family manual. This paradigm shift will allow family members to be active participants in the treatment of their loved ones. With the right help, people with BPD can get better They deserve a chance. Call TARA APD's Helpline at 1-888-4-TARA APD for information and referrals.