The Essential Family Guide to Borderline Personality Disorder

by Randi Kreger

  • Do you have time to keep up with the latest BPD research? (It’s vital that psychiatrists, especially, be aware of the latest studies about medications. BPD is an active area of research, with hundreds of studies published each year. Pick a psychiatrist who stays current. With psychiatrists, you do want to use the correct diagnosis.)

  • How do you view family members as being affected by their borderline family member? Do you do family therapy as well? (Whether the therapist involves the family in therapy is not the point; ideally, you at least want someone who understands how the entire family is affected.)

  • (If your family member has a co-occurring disorder) Do you have any experience treating someone with this co-occurring disorder? (If not) How would you address both illnesses?

  • Do you believe that recovery from BPD is possible, and if so, to what degree? (The clinician’s attitudes are influential. Innumerable studies have discovered that people tend to live up—or down—to people’s expectations of what they can accomplish. Even those who are optimistic may tell you that a complete recovery is unlikely. However they respond, remember that they’re probably speaking about lower-functioning conventional BPs, those who are often suicidal and practice self-harm. And if they’re negative, don’t take this for a fact and lose hope. They don’t know you or your family member, and they may not be up-to-date with the latest treatment information.)

  The Client-Therapist Relationship

  Mental health experts are beginning to realize that only 15 percent of therapy success is related to the orientation of the therapist. The other 85 percent is the therapeutic relationship between the client and a therapist experienced in treating BPD.8 Data show that even the placebo effect plays a far greater role than the method used. This is probably even truer for patients with BPD, who have major issues with trust, low self-worth, fear of abandonment, and forming close bonds.

  In mental health-speak, a good relationship is called a therapeutic alliance. A therapeutic alliance is one in which the therapist offers empathy; genuine, unconditional caring; and validation, and who builds a sense of trust. Clients, in turn, feel safe, respected, and understood. Once clients feel safe, they can calmly and noncritically observe their own behavior, which leads to insight and personal growth.9

  This fact can bring much hope to BPs and non-BPs alike, since it is so difficult to find clinicians as knowledgeable about BPD as you would like them to be, let alone meet the rest of the criteria.

  Obtaining a Diagnosis

  Why is it so hard to make a psychiatric diagnosis? Widely published psychiatrist Edward Drummond, MD, says it’s because unlike some physical illnesses, “Mental illness does not offer up an obvious villain; no rogue bacteria we can scour with an antibiotic or cancer cells we can see under a microscope.” This means that while we wish the process of obtaining a definitive diagnosis were more scientific and consistent, we just aren’t there yet.

  As you go through the process of getting an accurate diagnosis, you’ll find that clinicians have different belief systems. Some mental health professionals believe that diagnoses are of minimal value and are too subjective. In therapy, they usually prefer to focus on specific issues and concerns—unless, of course, there are specific treatments (medications or therapies) shown to be effective with this particular problem. In other words, no effective treatment, no diagnosis.

  The problem with this point of view is that it doesn’t take into account that effective treatments can and do become available, as they have with BPD and a host of other brain disorders. Clinicians who adhere closely to the diagnostic literature find making a proper diagnosis of value because they believe it aids them in developing a deeper understanding of the condition, addressing specific problems, and developing individualized treatment plans.

  Treatment Plans

  In most cases, the discussions in therapy sessions are somewhat free flowing or flexible. But the patient and therapist should have a plan that outlines the goals of therapy and how they’re going to get there. Treatment plans generally include things such as

  • the problems that brought the client to therapy, from “stress” to “feelings of emptiness” and how much they interfere with having a normal life (mild, moderate, serious, severe)

  • specific goals for treatment and the steps that need to be taken to reach these goals, such as treatment methods, their frequency, and medications

  • the role of any other health care providers who may be involved in the patient’s care, as well as the intervals when the plan will be reviewed and adjusted if needed.

  Diagnosing Children

  Because a minor’s personality isn’t fully formed, clinicians tell parents to defer a formal BPD diagnosis until and unless the traits persist into adulthood. But that can be a long wait, and this reluctance to diagnose can have unintended consequences by depriving the child of help that he or she needs.

  Robert Friedel, MD, one of the most influential psychiatrists in the field of BPD, believes that if parents see that their child has BPD-like traits, they should take the child to be evaluated as early as two years old. He also points out that the DSM allows for a BPD diagnosis in childhood if the patient has had symptoms for more than a year.

  “If you get them evaluated, you can at least help them through a number of years before a clear diagnosis can be made,” he says. “Just as it’s possible to taste a spice and then add it to a soup without knowing what it is, it’s possible to treat a child who displays BPD-like symptoms without first formally diagnosing BPD.”10

  A major issue is divining what is typical adolescent acting-out behavior and what is indicative of BPD. The answer lies not in the behavior itself, but the reason for the behavior.

  Blaise Aguirre, MD, the medical director of the Adolescent DBT Center at McLean Hospital in Belmont, Massachusetts, says, “Like typical adolescents, adolescents with BPD may drink, drive recklessly, use drugs, and defy their parents. However, adolescents with BPD often use drugs, self-injure, and rage against their parents as a way of coping with profound misery, emptiness, self-loathing, and abandonment fears.”11

  A comprehensive psychiatric evaluation usually takes several hours and may be spread over more than one visit. The professional interviews the child or adolescent, the parents or guardians, and other professionals involved with the child.

  The evaluation frequently includes the following:

  • a description of the child’s present problems and symptoms

  • information about health, illness, and treatment

  • parent and family health and psychiatric histories

  • information about the child’s development, school performance, friends, and family relationships

  • if needed, laboratory studies such as blood tests, X-rays, or special assessments (for example, psychological, educational, or speech and language evaluation)

  The psychiatrist develops a report that describes the child’s problems and provides a diagnosis. This report becomes the foundation for the treatment plan.12

  Disclosing the Diagnosis

  Some mental health professionals don’t believe in telling borderline patients their diagnosis. Reasons include

  • They might adopt it as a fixed identity.

  • They might use it as an excuse not to make difficult changes.

  • They believe diagnoses are irrelevant.

  • They might become upset and angry, especially because of the stigma.

  According to Dr. Aguirre, some clinicians don’t divulge a BPD diagnosis to the parents because they don’t want to upset the parents and because other diagnoses with some overlapping symptoms, such as bipolar disorder, a conduct disorder, or attention-deficit/hyperactivity disorder, are easier to accept because they’re easier to treat. The stigma of BPD is a clinician’s issue, not the patients’.13

  According to psychiatrist John G. Gunderson and others, the advantages of BPs knowing their diagnosis include the following:14

  • It h
elps patients feel relieved and less isolated because they now know they’re not alone in their misery. Today, dozens of online communities exist where people with BPD share information and support.

  • Knowing their diagnosis enables patients to study and investigate BPD. If you walk into any decent-sized bookstore, you’ll find several books about BPD (including empathic guides for those diagnosed with the disorder) already stocked on the shelves and many more you can order or find online. (See Resources, page 243.)

  • It invites patients to actively participate in treatment planning. BPD psychiatrist Robert L. Trestman, MD, says, “It is important to engage patients in an active discussion and develop a consensus. . . . Unless there is mutual agreement about the significance of the problems, the priority for intervention, and the willingness to participate in treatment to reduce the symptoms and improve functional capacity, little will be accomplished.”15

  What about BPs themselves? Dozens of BPs online say that learning about the diagnosis enabled them to become a critical part of the therapy process. Individuals with BPD all over the world manage their own blogs, Web sites, and message boards about BPD. Several have written books, either autobiographies or books on recovery.

  Some BPs do become angry—at least at the outset of getting this diagnosis. But that doesn’t mean they should be protected from learning why their life has been such an endless struggle. Everyone who learns they’re facing a tremendous loss—and having BPD certainly qualifies—can become angry. Even those who felt worse after hearing the news came to view it as a positive turning point in their lives.

  Elisabeth Kübler-Ross, MD, a pioneer in understanding the way we face death and dying, identified anger as one of the stages in the grieving process. The others are denial, bargaining, depression, and finally acceptance.

  It comes down to this: reconciling yourself to bad news—including being diagnosed with BPD—is a process that can’t be hurried. Anger is a perfectly human reaction (although it’s sure a lot more intense with BPs). People go back and forth through the stages, and some don’t make it all the way through.

  There may be good reasons why an individual patient should not be told. There are also good reasons why you might not want the diagnosis written on the patient’s chart. It is to be hoped that, as clinicians gain knowledge about new treatment methods, the assumption will be that patients deserve to know.

  Be Patient: Therapy Takes Time

  Don’t underestimate the difficulty of change. It’s called a learning curve for a reason. Mental health professionals, no matter how talented, and medications, no matter how effective, can’t quickly undo a lifetime investment in the distorted way BPs relate to themselves, those they love, and the world around them.

  Mahari explains, “Some with BPD, despite being motivated and committed to the therapy process, will need longer periods of time to take in information, understand things more, and create change. Even when a borderline ‘gets it’ intellectually, there is still a lot of very ingrained and patterned self-defeating and negatively distorted thinking that they must work through. Recovery from BPD is like thoughtfully peeling away the layers of a giant and complex onion, one layer at a time.”16

  Therapist Andrea Corn echoes what Mahari says. “Clients with BPD take a while to realize what they’re feeling. They say, ‘The other person made me feel that way, it was her fault, it was his fault, he did it.’ It’s very hard for them to take the ownership. It can take years to tease this stuff out.”17 So as the BP’s therapy progresses, carefully monitor your own hopes and expectations. You should start seeing some progress, but things will go up and down.

  Health Insurance

  Getting your insurance company to pay for BPD treatment is difficult because of the way the diagnosis is categorized in the DSM.

  Axis I versus Axis II

  Diagnoses are places in one of five domains, or “axes.” Although there are five of them, you need only be concerned with the first two. They are

  • Axis I: Clinical disorders, including major mental disorders such as bipolar, clinical depression, and eating disorders, as well as developmental and learning disorders. These are considered “treatable.”

  • Axis II: Pervasive, persistent, and long-standing personality conditions, as well as mental retardation. These are considered “untreatable.”

  The purpose of the “multiaxial approach,” as they call it, is to assist clinicians in assessing the impact of the disorder and planning treatment. In practice, however, insurance companies are using it to deny treatment for Axis II disorders since they’re labeled as lost causes—untreatable—despite the measurable effectiveness of new treatments.

  BPD and other personality disorders are Axis II disorders. Because so many BPs also have a co-occurring Axis I disorder, especially clinical depression, they can get some therapy sessions approved. But it’s not enough to tackle BPD. Managed care, which tries to limit services wherever it can, intensifies the problem.18

  Fortunately, a small but growing number of insurers are beginning to consider DBT for borderline patients since DBT research shows that it reduces inpatient stays, as well as visits to the hospital’s emergency room.

  Experts interviewed by the American Psychological Association’s newsletter Monitor on Psychology suggest that therapists treating borderline patients do the following:

  • Assume that the insurance company will respond to well-thought-out arguments about why they should subsidize longer treatment for borderline patients and then make the best case possible to the company.

  • When the insurance is an employer-sponsored plan, there may even be times when it’s appropriate to register a complaint with the employer about the insurance company’s handling of a claim.

  • Contact the American Psychological Association and their state psychological associations if they encounter egregious insurance company practices, allowing the APA to track the situation and perhaps communicate with the company.19

  General Health Insurance

  Most health insurance plans and HMOs provide some coverage for psychiatric care; many also cover psychological counseling. However, because plans vary considerably, you should check your plans for both outpatient (office visit) and inpatient (in-residence) coverage. Specifically, find out the following:

  • What they’ll pay for and what you must pay for. This includes the yearly deductible for inpatient care, outpatient care, or both. There may be separate deductibles for each.

  • What co-payments are required at each office visit. Depending on your insurance company, this may differ between providers who are in the network versus out of the network. (If the preferred clinician is out of network, it still might be worth paying more.)

  • The dollar limits for inpatient and outpatient care that your insurer will pay each calendar year.

  • The number of outpatient visits and inpatient days the insurer will pay for. This can make a huge difference in what the therapist can accomplish in the time allowed.

  • Whether the insurer has a list of allowable mental health professionals. If they do, obtain the list and make sure it is complete.

  • Whether you need a prior authorization from your primary doctor.

  • What you’re supposed to do in an emergency.20

  In addition, the National Education Alliance for Borderline Personality Disorder suggests asking the following questions up front:

  • What additional charges, if any, will there be for tests, equipment, medications, and so on?

  • How often will you be billed? What are the other terms of payment (for example, full payment within thirty days)?

  • What forms of insurance or payment do they accept: Medicaid, Medicare, private insurance, credit cards, and so on?

  • Is Supplemental Security Income (SSI) affected? If so, how?

  • Is a financial counselor available to explain charges and billing procedures?21

  If your insurance company will only cover services prov
ided by one of the clinicians on its list, talk with your insurance provider and ask if they will make an exception. Point out that the right clinician may keep your family member out of the hospital and emergency room, which will save the company money.

  Similarly, if your insurance company doesn’t want to cover a certain drug because a lower-cost one is supposed to be just as effective (but isn’t), ask your doctor or the pharmacist if you can appeal this. This may be all it takes to get the right medication.

  A Therapist’s View on Therapy

  Byron Bloemer, PhD, is a therapist in Wisconsin who treats borderline patients using an eclectic approach. Here is his view on therapy.22

  When you’re chatting with the potential therapist, you may feel intimidated or nervous and wonder if it’s insulting to ask these questions. But do it. If the therapist isn’t tolerant of your questions, he’s probably not the right one for you.

  Good therapists must avoid getting pulled into their borderline patient’s misery so they can keep therapy on track. They need a balance between caring about clients and detaching enough to help the patient make progress in therapy. A level of professional detachment protects the relationship; I couldn’t continue to work with someone if I took their ups and downs personally. This takes a combination of experience, confidence, and theoretical understanding.

  Effective therapists also need to understand that clients are on their own life journey. They’re on their own path, and as a therapist they’re only going to be a helper in their lives.

  Therapist education is a problem. Most psychologists are trained as generalists. The Diagnostic and Statistical Manual of Mental Disorders has more than 900 pages, and only a few of them are about BPD. Even during doctoral training or master’s training, there is no specific section on BPD. What ends up happening is that after their training is done, some take special courses on BPD to receive continuing education credits.

  An experienced therapist can tell intuitively how much time they should spend talking with clients about their past versus their current life and immediate emotional needs. It depends on how sophisticated they are and how quickly they pick things up. Borderline clients are often very, very bright people.