What is
Borderline Personality Disorder?
Personality disorders affect about 10% of the general population. This group of mental disorders is defined by maladaptive personality characteristics that have a consistent and serious effect on work and interpersonal relationships. DSM-IV defines ten categories of personality disorder. Of these, Borderline Personality Disorder (BPD) is the most frequent in clinical practice. BPD is also one of the most difficult and troubling problems in all of psychiatry.
The term "borderline" is a misnomer. These patients were first described sixty years ago by psychoanalysts who noted they did poorly in treatment, and therefore theorized that this is a form of pathology lying on the border between psychosis and neurosis.
Although we no longer believe that patients with BPD have an underlying psychosis, the name "borderline" has stuck. A much more descriptive label would be "emotionally unstable: personality disorder." The central feature of BPD is instability, affecting patients in many sectors of their lives.
Thus, borderline patients show a wide range of impulsive behaviors, particularly those that are self destructive. They are highly unstable emotionally, and develop wide mood swings in response to stressful events. Finally, BPD may be complicated by brief psychotic episodes.
Most often, borderline patients present to psychiatrists with repetitive suicidal attempts. We often see these patients in the emergency room, coming in with an overdose or a slashed wrist following a disappointment or a quarrel.
Interpersonal relationships in BPD are particularly unstable. Typically, borderline patients have serious problems with boundaries. They become quickly involved with people, and quickly disappointed with them. They make great demands on other people, and easily become frightened of being abandoned by them. Their emotional life is a kind of rollercoaster.
What Causes BPD?
We are only beginning to understand the causes of BPD. As in most mental disorders, no single factor explains its development. Rather, multiple risk factors, which can be biological, psychological, or social, play a role in its etiology.
The biological factors in BPD probably consist of inborn temperamental abnormalities. Impulsivity and emotional instability are unusually intense in these patients, and these traits are known to be heritable. Similar characteristics can also be found in the close relatives of patients with BPD. Research suggests that the impulsivity that characterizes borderline personality might be associated with decreased serotonin activity in the brain.
The psychological factors in this illness vary a great deal. Some borderline patients describe highly traumatic experiences in their childhood, such as physical or sexual abuse. Others describe severe emotional neglect. Many borderline patients have parents with impulsive or depressive personality traits. However, some patients report a fairly normal childhood. Most likely, any of these scenarios is possible. Borderline pathology can arise from many different pathways.
The social factors in BPD reflect many of the problems of modern society. We live in a fragmented world, in which extended families and communities no longer provide the support they once did. In contemporary urban society, children have more difficulty meeting their needs for attachment and identity. Those who are vulnerable to BPD may have a particularly strong need for an environment providing consistent expectations and emotional security.
Most likely, BPD develops when all these risk factors are present. Children who are at risk by virtue of their temperament can still grow up perfectly normally if provided with a supportive environment. However, when the family and community cannot meet the special needs of children at risk, they may develop serious impulsivity and emotional instability.
The Course of BPD
Borderline personality disorder is an illness of young people, and usually begins in adolescence or youth. About 80% of patients are women. BPD is usually chronic, and severe problems often continue to be present for many years. About one out of ten patients eventually succeed in committing suicide. However, in the 90% who do not kill themselves, borderline pathology tends to "burn out" in middle age, and most patients function significantly better by the ages of thirty-five to forty. The mechanism for this improvement is unknown. However, other disorders associated with impulsivity, such as antisocial personality and substance abuse, also tend to burn out around the same age.
The level of long term improvement in borderline patients varies a great deal. A minority will develop a successful career, marry happily, and recover completely. A minority will continue to be highly symptomatic into middle age. In the majority of cases, both impulsivity and emotional instability decline over time, and the patient is eventually able to function at a reasonable level.
BPD can be very burdensome for the patient's family. It is particularly difficult to deal with suicidal threats and attempts. Parents often wonder if they are at fault for the patient's condition and patients sometimes blame their parents, and some therapists will agree with them. However, the scientific evidence does not justify the conclusion that the family carries the primary responsibility for the development of borderline personality disorder.
The Treatment of BPD
There is no specific or universal method of treatment for BPD. At times, drugs can take the edge off impulsive symptoms. For example, some patients do better with low dose neuroleptics. However, no psychopharmacological agent has any specific effect on the underlying borderline pathology. In spite of the association between impulsivity and low serotonin activity, specific serotonin reuptake inhibitors (such as fluoxetine) rarely produce a dramatic improvement.
The mainstay of treatment for BPD has always been, and continues to be psychotherapy. However, because of their impulsivity, about two thirds of borderline patients drop out of treatment within a few months. Those patients who stay in therapy will usually improve slowly over time.
The chaos that characterizes border line patients makes them difficult cases for therapists. A patient with BPD may be continuously suicidal for months or years. Moreover, many of the same problems that patients have with other people arise in their relationships with helping professionals.
A number of different therapeutic methods have been tried with borderline patients. The largest clinical literature has come from psychoanalytically oriented therapists. Traditionally, psychotherapists focus on building a strong working alliance with the borderline patient. When the therapeutic relationship provides a safe haven, it is easier to work on developing better relationships with other people.
Most of the work in psychotherapy consists of helping patients to be less impulsive, and to exercise better judgment in their management of their personal lives.
In view of the frequency of reported childhood trauma in borderline patients, some therapists have suggested that BPD should be thought of as a form of post traumatic stress disorder. These clinicians tend to focus on uncovering negative events so as to help patients process them. However, there is no evidence that these methods are successful. In fact, there is some reason to suspect they can make patients worse, by focusing too much on the past, and not enough on the present. In addition, borderline patients can be particularly prone to develop false memories in psychotherapy.
Recent research suggests that cognitive-behavioral therapy, which has developed methods targeting impulsivity and emotional instability, may be particularly appropriate for borderline patients. Studies of a behavioral treatment specifically developed for patients with BPD, "dialectical behavior therapy," indicate that this approach can bring suicidality under control within one year. However, we do not know whether this method provides an effective long term treatment for the disorder.
BPD creates enormous suffering in those afflicted with it. Most patients describe a continuous state of emotional chaos, swinging from extremes of depression, anger, and anxiety. Borderline patients often need to feel suicidal in order to know that they can escape from their dysphoric feelings. The road to recovery in BPD is often long and difficult. However, borderline patients are often attractive and productive people. When treatment is successful, the patient, the therapist, and the family can all feel that it was well worth the trouble to see things through.
We need to conduct more research on the causes of BPD in order to develop more rational methods of treatment. In the future, we will probably have methods of pharmacotherapy and psychotherapy specifically designed for this challenging patient population. In the meantime, the best hope for most patients consists of linking up with a good therapist.
From Grief to Advocacy: A Mother's Odyssey
by Valerie Porr, M.A.
What do you do when the person you love the most on this earth is stricken with an illness that so completely changes her behavior it seems as though she has disappeared, leaving behind only a hollow shell; an illness that you know nothing about; that your friends don't believe exists; that professionals don't talk about; for which there is little or no explanatory literature; an illness which even Oprah doesn't discuss? Borderline Personality Disorder (BPD) is such an illness and is the diagnosis given to my only child.
At seventeen, my daughter ran away from home for the first time, revealing an intense hatred for me that she said she had nurtured for years. She accused me of child abuse. She was aided and abetted in this venture by a wealthy family who took her in, hired a lawyer for her and took me to court for control of her trust fund and her child support checks, all the while reciting a litany that she is still repeating. The court papers implied that I was the sick one and she was the victim who needed rescuing from me. I, on the other hand, had eight diagnoses from the various "reputable" therapists who had seen my daughter over the course of her adolescence. As it turned out, the previous professional observations were all stepping stones leading to a diagnosis of BPD. Sadly, this label explained both her history of impulsive behavior and her letters and diary entries I later found, wherein acts and feelings were revealed of which I was completely unaware.
Empowered by the court and further enabled by her hippie godfather, my beloved daughter walked out of my life. I have not seen her for over five years. She is now twenty three.
Grief has become a permanent part of my daily existence. Unfortunately, for those of us whose children are thus afflicted, we are denied the solace of the ordinary rituals and rites of mourning. We must learn to live with our loss and disappointment as others live with physical disabilities.
This edition of The Journal in some ways represents my personal odyssey over the past five and one half years in search of information, expertise and an effective form of therapy that will help to restore some semblance of the child I've lost-that can lift the gloom that pervades my life. On the pages that follow you will be introduced to people I have met, lessons I have learned, and circumstances that account for my evolution as a determined advocate for persons with BPD and for their families.
Bewildered and deeply saddened when my child left, I read every available book about BPD trying to understand and although I found the descriptions of the illness to be accurate, the explanations given did not coincide with my experiences with my daughter. Confused, feeling completely alone and hopeless, I started a support group for family members of people with BPD. As family after family joined our group and shared their histories, I found echoes of my own pain. It seemed we had all been accused of some sort of child abuse. That was the common denominator of most of our experiences. All of us had a child who either loved us or hated us, who had rage attacks and bouts of depression, who harmed themselves in myriad ways from self mutilation to attempted suicide to gambling to sexual addiction to eating disorders; who were impulsive, lacked emotional control or were substance abusers. In addition, these children of ours rarely perceived themselves as having a problem. To hear them tell it they were merely the victims of the behavior of others. The pain of seeing our children in this condition was magnified by the professionals who didn't or couldn't help them yet never hesitated to blame us for the problem. We, the parents, were made to feel like destroyers of those we had brought into the world, loved and nurtured.
At this point, through the efforts of a dedicated fellow advocate, John Grelek, I had the good fortune to learn about the work of Dr. Marsha Linehan of the University of Washington in Seattle. She had developed something called Dialectical Behavioral Therapy (DBT) - a system of cognitive behavioral therapy for the treatment of BPD with outcome studies showing its efficacy. Suddenly, in her work, I found some answers to my questions and, for the first time, I felt there was hope for my child and for others. It became my "mission" to bring Dr. Linehan's work into the New York City Mental Health System.
With the help of key people in the city and state mental health systems, and my loyal ally and mentor, Dr. Robert Trestman, in record time we applied for and got funds to bring Dr. Linehan to NYC for a two day training conference that was attended by 350 professionals. It was an extraordinary event, and one that Dr. Trestman and I agreed would require appropriate follow up to insure any real progress. With that in mind, we created an entity called TARA-APD-an acronym for Treatment and Research Advancement Association for Personality Disorder. As a non-profit organization it would be the voice that was needed for the support of those suffering BPD and contending with the conflicts in today's changing world of research and health delivery systems. We would no longer tolerate the indignities that people with BPD and their families had historically been subjected to by governmental and medical authorities who should know better.
As a child I had seen a film called "Gaslight" in which Ingrid Bergman, an heiress who is newly married, remarks to Charles Boyer, her ne'er-do-well husband, that the gaslights in their home seem to be dimming. "No, they aren't darling," says Boyer, as he fawns over her, "You are imagining things." Ingrid soon feels that she is going mad when, over time, what she perceives as reality is not being validated by her doting husband. The dimming gaslight is the perfect metaphor for the experience of living with someone with BPD, and advocating for education, appropriate treatment and research for this painful disorder.
The person suffering from BPD, a severe and persistent mental illness, may appear completely "normal" and may often have the ability to act "as if" he or she has no problems. In fact, many people with BPD become professional actors. This "as if" ability of people with BPD can be particularly devastating to those who love them.
I remember a night when my daughter locked herself in the bathroom after a rage attack. I called the police. She kept the police waiting outside the door for thirty minutes while I escalated to absolutely frantic concern. When she finally emerged, dissociated from her rage, she acted with regal serenity "as if" she were Grace Kelly. The police gave me that "raised eyebrow" look to which I have since become accustomed. It is a look all too familiar to families of people with BPD who feel foolish and embarrassed when authorities arrive to assist with a problem that now seems not to be there. It is "as if..."
If one combines the professional's attitudes toward people with BPD with the ability of a high functioning person with BPD to act "as if " - one is having dinner with Boyer and Bergman as the lights dim. The supportive family member is frustrated and confused by the patient's demonstration of the ability to effectively act out a denial of the illness, while the doctor minimizes or avoids it with dismissal comments like, "She's just a teenager. She'll outgrow it..." and the gaslights seem to dim, again.
The attitude of the psychiatric community towards BPD is very complex. Many professionals fail to recognize BPD or try to avoid making the diagnosis. It is a disorder-an illness-that polarizes professionals into non-professional behavior which can then be called stigma or counter transference or just plain "I can't stand this patient." The sense of frustration and of failure which professionals experience when treating people with BPD makes some feel uncomfortable, inadequate or ineffective. This is usually blamed on the patient and, of course, on the family - bad patients from dysfunctional families.
NAMI, the National Alliance for the Mentally III, doesn't include BPD in its advocacy efforts, as if they have decided "it is not a brain disease." Current research findings in neurobiology and psychopharmacology disagree with their unsubstantiated position, however, one can see how they justify it by pointing out that, until now, BPD has been omitted from most epidemiological studies, and the American Psychiatric Association, the National Institute of Mental Health, the Center for Mental Health Services, NMHA and NAMI have yet to produce even a brochure explaining BPD. This seems strange when you consider that BPD makes up 2% of the general population, 20% of the inpatients and 11% of the outpatients in the mental health system, has a 10% suicide rate and fills our prisons, divorce courts and civil courts. Thus I have become Ingrid Bergman, complaining that the lights are dimming while everyone looks at me with that "raised eyebrow." Should I tell the emperor he is naked while others are admiring his invisible new clothes?
The person suffering with BPD has a similar experience. Knowing that their treatment is inappropriate and their medication (generally thorazine) is not helping, they often quit treatment. Wouldn't you? They are then stigmatized, labeled treatment resistant and difficult patients. And so they are. Unless, of course you question the treatment offered by an antiquated mental health system that has not yet given up the gaslight for something more illuminating.
Living with the isolation that must accompany the experience of having BPD requires a great deal of courage and a very strong desire to survive. In 1994 the New York State Office of Mental Health Information Service reported only 297 borderline patients in the State of New York. Knowing these numbers couldn't possibly be accurate, Dr. Charles Swenson of NY Hospital Cornell Medical Center and I compiled a provider questionnaire. Out of 39 responses, 997 patients with BPD were reported. If you question any clinician or substance abuse counselor they will tell you how prevalent BPD is in their facility and complain about how hard this population is to treat. Lectures or workshops on BPD are always well attended. So many patients, families and providers are desperate for any information at all.
BPD patients are usually admitted to psychiatric hospitals through the emergency room after a suicide attempt. The patient usually makes four or five; one out of ten succeeds. These are tough odds. At a recent Suicide Prevention Conference not one of the presenters ever mentioned BPD. An esteemed researcher presenting his findings on adolescent suicide also omitted discussion of BPD. When I asked why he didn't mention an illness which effects so many adolescents, his response was, "Ah, yes. You're right, but it's a very difficult subject." Is that the gaslight I see dimming again? Because it is a difficult disorder, if we avoid discussing it, will it then, perhaps, go away? This professional avoidance is unacceptable to every parent or loved one of a person with BPD who lives in fear of that middle-of-the-night telephone call and to the parent whose child repeatedly tries to commit suicide.
And what solace is it for the family whose child has died. Yes, it's difficult! BPD can be fatal. Should we hush up and politely go away? Or do we go on till we have changed this professional denial of so serious and life threatening a problem? Yes, Dr. Esteemed Researcher, we agree "...it's a very difficult subject!" BPD is co-morbid with anorexia and bulimia. Those who suffer from lack of impulse control will often use food as a means of acting out. At lectures on eating disorders it is rare to hear a discussion of how to deal with the anorexic who has BPD. When I ask my usual questions, the faraway look wil1 come into the eyes of the presenter as he says, "Yes, we should be studying that, as it is related." The voice will then trail off as they quickly take another question. But, I persevere; I send them related research papers, I ask more questions, and I tell them about TARA -the Association for Personality Disorder. I pose questions at each and every lecture or workshop I attend. You can hear some say, "Oh, no...not her again!" Yes, there I am...somebody's relentless mother, asking researchers the questions practitioners are desperate to learn about and should be asking themselves. When I am not there, does anyone else bring up this stigmatized disorder? BPD is spoken of in hushed tones, with a tinge of embarrassment-like syphilis or TB, taboo diseases at the turn of the century, or like AIDS when it first came to the public's attention. If we continue to allow BPD to remain in the psychiatric closet we will never get our children the treatment they deserve. More questioners are wanted. More advocates are needed; a chorus of voices demanding that things change!
Males with BPD are prone to domestic violence and rage attacks. They make up a large percentage of the prison population and seem to be resistant to treatment as usual. A leading specialist in schizophrenia who writes on the conditions of the mentally ill in the forensic system and advises families to be aggressive advocates and provoke wolf-like - confrontations recently, unashamedly, described BPD as a "garbage bag diagnosis." I took his advice and advocated aggressively, with letters to him, and finally a confrontation with him-eyeball to eyeball, face to face. And what did he do, this champion I had admired from afar for his courage and knowledge on other issues? He promised me he would never again describe BPD in those terms. Be assured we will monitor the keeping of that promise. It appears that to be a successful advocate one must perfect the role of professional pest. That is what I have proudly become.
People with BPD can be helped by combining sensitive and up to date psychopharmacological treatment and effective new methods of cognitive therapy. This will keep patients out of expensive hospital beds and help them back into meaningful roles in the community. Why would our society choose to ignore what can work to help people whose neurobiological disorder causes them to wreak havoc on themselves, bring despair to their families, create problems in the work place, fill our prisons and jails, clog our courts with stalkers and lengthy divorce and child custody battles, and burn out therapists faster than our schools can turn them out?
Finding the answers to these questions will not be easy. But we are determined to play a prominent role in putting BPD on the neurobiological disorders agenda. Some days I feel like Sisyphus pushing a huge rock to the top of the mountain. But, with TARA-APD and the people whose articles and experiences you will read in this edition, I know, at last, I am no longer alone. We are a growing community of mutual interest. To raise money for research, to create a family data bank and share our insights and information, and to advocate, advocate, advocate will, some day soon, turn out those metaphorical gaslights and illuminate the path to better tomorrows.
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