Borderline Personality Disorder Family Guidelines
by John G. Gunderson, M.D. and Cynthia Berkowitz, M.D
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|16 Page Booklet Format|
|French||Recommandations a l’usage des familles|
|Italian||Linee Guida per i familiari|
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|Greek||Συμβουλές για συγγενείς|
Goals: Go Slowly
Remember that change is difficult to achieve and fraught with fears. Be cautious about suggesting that “great” progress has been made or giving “You can do it” reassurances. Progress evokes fears of abandonment.
The families of people with Borderline Personality Disorder can tell countless stories of instances in which their son or daughter went into crisis just as that person was beginning to function better or to take on more responsibility. The coupling of improvement with a relapse is confusing and frustrating but has a logic to it. When people make progress – by working, leaving day treatment, helping in the home, diminishing self-destructive behaviors, or living alone- they are becoming more independent. They run the risk that those around them who have been supportive, concerned, and protective will pull away, concluding that their work is done. The supplies of emotional and financial assistance may soon dry up, leaving the person to fend for herself in the world. Thus, they fear abandonment. Their response to the fear is a relapse. They may not make a conscious decision to relapse, but fear and anxiety can drive them to use old coping methods. Missed days at work, self-mutilation, a suicide attempt, or a bout of overeating, purging or drinking may be a sign that lets everyone around know that the individual remains in distress and needs their help. Such relapses may compel those around her to take responsibility for her through protective measures such as hospitalization. Once hospitalized, she has returned to her most regressed state in which she has no responsibilities while others take care of her.
When signs of progress appear, family members can reduce the risk of relapse by not showing too much excitement about the progress and by cautioning the individual to move slowly. This is why experienced members of a hospital staff tell borderline patients during discharge not that they feel confident about their prospects, but that they know the patient will confront many hard problems ahead. While it is important to acknowledge progress with a pat on the back, it is meanwhile necessary to convey understanding that progress is very difficult to achieve. It does not mean that the person has overcome her emotional struggles. You can do this by avoiding statements such as, “You’ve made great progress,” or, “I’m so impressed with the change in you.” Such messages imply that you think they are well or over their prior problems. Even statements of reassurance such as, “That wasn’t so hard,” or, “I knew you could do it,” suggest that you minimize their struggle. A message such as, “Your progress shows real effort. You’ve worked hard. I’m pleased that you were able to do it, but I’m worried that this is all too stressful for you,” can be more empathic and less risky.
Lower your expectations. Set realistic goals that are attainable. Solve big problems in small steps. Work on one thing at a time. “Big”, long-term goals lead to discouragement and failure.
Although the person with BPD may have many obvious strengths such as intelligence, ambition, good looks, and artistic talent, she nonetheless is handicapped by severe emotional vulnerabilities as she sets about making use of those talents. Usually the person with BPD and her family members have aspirations based upon these strengths. The patient or her family may push for return to college, graduate school, or a training program that will prepare her for financial independence. Family members may wish to have the patient move into her own apartment and care for herself more independently. Fueled by such high ambitions, a person with BPD will take a large step forward at a time. She may insist upon returning to college full time despite undergoing recent hospitalizations, for example. Of course, such grand plans do not consider the individual’s handicaps of affect dyscontrol, black and white thinking, and intolerance of aloneness. The first handicap may mean that, in the example given, the B received on the first exam could lead to an inappropriate display of anger if it was thought to be unfair, to a self-destructive act if it was felt to be a total failure, or severe anxiety if it was believed that success in school would lead to decreased parental concern. The overriding issue about success in the vocational arena is the threat of independence —much desired but fraught with fear of abandonment. The result of too large a step forward all at once is often a crashing swing in the opposite direction, like the swing of a pendulum. The person often relapses to a regressed state and may even require hospitalization.
A major task for families is to slow down the pace at which they or the patient seeks to achieve goals. By slowing down, they prevent the sharp swings of the pendulum as described and prevent experiences of failure that are blows to the individual’s self-confidence. By lowering expectations and setting small goals to be achieved step by step, patients and families have greater chances of success without relapse. Goals must be realistic. For example, the person who left college mid-semester after becoming depressed and suicidal under the pressure most likely could not return to college full time a few months later and expect success. A more realistic goal is for that person to try one course at a time while she is stabilizing. Goals must be achieved in small steps. The person with BPD who has always lived with her parents might not be able to move straight from her parents’ home. The plan can be broken down into smaller steps in which she first moves to a halfway house, and then into a supervised apartment. Only after she has achieved some stability in those settings should she take the major step of living alone.
Goals should not only be broken down into steps but they should be taken on one step at a time. For example, if the patient and the family have goals for both the completion of school and independent living, it may be wisest to work on only one of the two goals at a time.
Keep things cool and calm. Appreciation is normal. Tone it down. Disagreement is normal. Tone it down, too.
This guideline is a reminder of the central message of our educational program: The person with BPD is handicapped in his ability to tolerate stress in relationships (i.e., rejection, criticism, disagreements) and can, therefore, benefit from a cool, calm home environment. It is vital to keep in mind the extent to which people with BPD struggle emotionally each day. While their internal experience can be difficult to convey, we explain it by summarizing into three handicaps: affect dyscontrol, intolerance of aloneness, and black and white thinking. To review:
A person with BPD has feelings that dramatically fluctuate in the course of each day and that are particularly intense. These emotions, or affects, often hit hard. We have all experienced such intense feelings at times. Take for example the sensation of pounding heart and dread that you may feel when you suddenly realize that you have made a mistake at work that might be very costly or embarrassing to your business. The person with BPD feels such intense emotion on a regular basis. Most people can soothe themselves through such emotional experiences by telling themselves that they will find a way to compensate for the mistake or reminding themselves that it is only human to make mistakes. The person with BPD lacks that ability to soothe herself. An example can also be drawn from family conflict. We have all had moments in which we feel rage towards the people we love. We typically calm ourselves in such situations by devising a plan for having a heart-to-heart talk with the family member or by deciding to let things blow over. The person with BPD again feels such rage in its full intensity and without being able to soothe himself through the use of coping strategies. It results in an inappropriate expression of hostility or by acting out of feelings (drinking or cutting).
Intolerance of Aloneness:
A person with BPD typically feels desperate at the prospect of any separation – a family member’s or therapist’s vacation, break up of a romance, or departure of a friend. While most of us would probably miss the absent family member, therapist or friend, the person with BPD typically feels intense panic. She is unable to conjure up images of the absent person to soothe herself. She cannot tell herself, “That person really cares about me and will be back again to help me.” Her memory fails her. She only feels soothed and cared for by the other person when that person is present. Thus, the other person’s absence is experienced as abandonment. She may even keep these painful thoughts and feelings out of mind by using a defense mechanism called dissociation. This consists of a bizarre and disturbing feeling of being unreal or separate from one’s body.
Black & White Thinking (Dichotomous Thinking):
Along with extremes of emotion come extremes in thinking. The person with BPD tends to have extreme opinions. Others are often experienced as being either all good or all bad. When the other person is caring and supportive, the person with BPD views him or her as a savior, someone endowed with special qualities. When the other person fails, disagrees, or disapproves in some way, the person with BPD views him or her as being evil and uncaring. The handicap is in the inability to view other people more realistically, as mixtures of good and bad qualities.
This review of the handicaps of people with BPD is a reminder that they have a significantly impaired ability to tolerate stress. Therefore, the family members can help them achieve stability by creating a cool, calm home environment. This means slowing down and taking a deep breath when crises arise rather than reacting with great emotion. It means setting smaller goals for the person with BPD so as to diminish the pressure she is experiencing. It means communicating when you are calm and in a manner that is calm. It does not mean sweeping disappointments and disagreements under the rug by avoiding discussion of them. It does mean that conflict needs to be addressed in a cool but direct manner without use of put-downs. Subsequent guidelines will provide methods for communicating in this fashion.
Maintain family routines as much as possible. Stay in touch with family and friends. There’s more to life than problems, so don’t give up the good times.
Often, when a member of the family has a severe mental illness, everyone in the family can become isolated as a result. The handling of the problems can absorb much time and energy. People often stay away from friends to hide a problem they feel as stigmatizing and shameful. The result of this isolation can be only anger and tension. Everyone needs friends, parties, and vacations to relax and unwind. By making a point of having good times, everyone can cool down and approach life’s problems with improved perspective. The home environment will naturally be cooler. So you should have good times not only for your own sake, but for the sake of the whole family.
Find time to talk. Chats about light or neutral matters are helpful. Schedule times for this if you need to.
Managing Crisis, Pay Attention, But Stay Calm
Don’t get defensive in the face of accusations and criticisms. However unfair, say little and don’t fight. Allow yourself to be hurt. Admit to whatever is true in the criticisms.
What that individual wants most is to be heard. Of course, listening without arguing means getting hurt because it is very painful to recognize that someone you love could feel so wronged by you. Sometimes the accusations hurt because they seem to be so frankly false and unfair. Other times, they may hurt because they contain some kernel of truth. If you feel that there is some truth in what you’re hearing, admit it with a statement such as, “I think you’re on to something. I can see that I’ve hurt you and I’m sorry.”
Remember that such anger is part of the problem for people with BPD. It may be that she was born with a very aggressive nature. The anger may represent one side of her feelings which can rapidly reverse. (See discussion of black and white thinking.) Keeping these points in mind can help you to avoid taking the anger personally.
Some families never talk in this way, and to do so may seem unnatural and uncomfortable at first. There may be a hundred reasons why there is no opportunity for such communication. Families need to make the time. The time can be scheduled in advance and posted on the refrigerator door. For example, everyone may agree to eat dinner together a few times a week with an agreement that there will be no discussions of problems and conflict at these times. Eventually, the discussions can become habit and scheduling will no longer be necessary.
Self-destructive acts or threats require attention. Don’t ignore. Don’t panic. It’s good to know. Do not keep secrets about this. Talk about it openly with your family member and make sure professionals know.
When families see the signs of trouble they may be reluctant to address them. Sometimes the person with BPD will insist that her family “butt out.” She may appeal to her right to privacy. Other times, family members dread speaking directly about a problem because the discussion may be difficult. They may fear that they would cause a problem where there might not be one by “putting ideas into someone’s head”. In fact, families fear for their daughter’s safety in these situations because they know their daughters well and know the warning signs of trouble from experience. Problems are not created by asking questions. By addressing provocative behaviors and triggers in advance, family members can help to avert further trouble. People with BPD often have difficulty talking about their feelings and instead tend to act on them in destructive ways. Therefore, addressing a problem openly by inquiring with one’s daughter or speaking to her therapist helps her to deal with her feelings using words rather than actions.
Privacy is, of course, a great concern when one is dealing with an adult. However, the competing value in these situations of impending danger is safety. When making difficult decisions about whether to call your loved one’s therapist about a concern or call an ambulance, one must weight concern for safety against concern for privacy. Most people would agree that safety comes first. There may be a temptation to under-react in order to protect the individual’s privacy. At the same time, there may be a temptation to overreact in ways that give the person reinforcement for her behavior. One young woman with BPD told her mother excitedly during an ambulance ride to a psychiatric hospital, “I’ve never been in an ambulance before!” Families must apply judgment to their individual situation. Therapists can be helpful in anticipating crises and establishing plans that fit the individual family’s needs.
Listen. People need to have their negative feelings heard. Don’t say, “It isn’t so.” Don’t try to make the feelings go away. Using words to express fear, loneliness, inadequacy, anger, or needs is good. It’s better to use words than to act out on feelings.
Do not rush to argue with your family member about her feelings or talk her out of her feelings. As we said above, such arguing can be fruitless and frustrating to the person who wants to be heard. Remember, even when it may feel difficult to acknowledge feelings that you believe have no basis in reality, it pays to reward such expression. It is good for people, especially individuals with BPD, to put their feelings into words, no matter how much those feelings are based on distortions. If people find the verbal expression of their feelings to be rewarding, they are less likely to act out on feelings in destructive ways.
Feelings of being lonely, different, and inadequate need to be heard. By hearing them and demonstrating that you have heard them using the methods described above, you help the individual to feel a little less lonely and isolated. Such feelings are a common, everyday experience for people with BPD. Parents usually do not know and often do not want to believe that their daughter feels these ways. The feelings become a bit less painful once they are shared.
Family members may be quick to try to talk someone out of such feelings by arguing and denying the feelings. Such arguments are quite frustrating and disappointing to the person expressing the feelings. If the feelings are denied when they are expressed verbally, the individual may need to act on them in order to get her message across.
Addressing Problems, Collaborate and be Consistent
When solving a family member’s problems, ALWAYS: Involve the family member in identifying what needs to be done; Ask whether the person can “do” what’s needed in the solution; Ask whether they want you to help them “do” what’s needed
By asking, you show recognition of how difficult the task may be for the other person. This goes hand in hand with acknowledging the difficulty of changing.
You may feel a powerful urge to step in and help another family member. Your help may be appreciated or may be an unwanted intrusion. By asking if your help is wanted before you step in, your assistance is much less likely to be resented.
Family members need to act in concert with one another. Parental inconsistencies fuel severe family conflicts. Develop strategies that everyone can stick to.
Family members may have sharply contrasting views about how to handle any given problem behavior in their relative with BPD. When they each act on their different views, they undo the effect of each other’s efforts. The typical result is increasing tension and resentment between family members as well as lack of progress in overcoming the problem.
An example will illustrate the point. A daughter frequently calls home asking for financial bail outs. She has developed a large credit card debt. She wants new clothing. She has been unable to save enough money to pay her rent. Despite her constant desire for funds, she is unable to take financial responsibility by holding down a job or living by a budget. Her father expresses a stem attitude, refusing to provide the funds, and with each request and insisting that she take responsibility for working out the problem herself. The mother meanwhile softens easily with each request and gives her the funds she wants. She feels that providing the extra financial help is a way of easing the daughter’s emotional stress. The father then resents the mother’s undoing of his efforts at limit setting while the mother finds the father to be excessively harsh and blames him for the daughter’s worsening course. The daughter’s behavior persists, of course, because there is no cohesive plan for dealing with the financial issue that both parents can stick to. With some communication, they can develop a plan that provides an appropriate amount of financial support, one that would not be viewed as too harsh by the mother, but would not be considered excessively generous in the father’s eyes. The daughter will adhere to the plan only after both parents adhere to it.
Brothers and sisters can also become involved in these family conflicts and interfere with each other’s efforts in handling problems. In these situations, family members need to communicate more openly about their contrasting views on a problem, hear each other’s perspectives, and then develop a plan that everyone can stick to.
If you have concerns about medications or therapist interventions, make sure that both your family member and his or her therapist/doctor/treatment team know. If you have financial responsibility, you have the right to address your concerns to the therapist or doctor.
Families may have a variety of concerns about their loved one’s medication usage. They may wonder whether the psychiatrist is aware of the side effects the patient is experiencing. Can the psychiatrist see how sedated or obese the individual has become? Is he or she subjecting the patient to danger by prescribing too many medications? Families and friends may wonder if the doctor or therapist knows the extent of the patient’s non-compliance or history of substance abuse.
When family members have such concerns, they often feel that they should not interfere, or are told by the patient not to interfere. We feel that if family members play a major supportive role in the patient’s life, such as providing financial support, emotional support, or by sharing their home, they should make efforts to participate in treatment planning for that individual. They can play that role by contacting the doctor or therapist directly themselves to express their concerns. Therapists cannot release information about patients who are over the age of 18 without consent, but they can hear and learn from the reports of the patient’s close family and friends. Sometimes they will work with family members or friends but obviously with their patient’s consent.
Limit Setting, be Direct but Careful
Set limits by stating the limits of your tolerance. Let your expectations be known in clear, simple language. Everyone needs to know what is expected of them.
Expectations need to be set forth in a clear manner. Too often, people assume that the members of their family should know their expectations automatically. It is often useful to give up such assumptions.
The best way to express an expectation is to avoid attaching any threats. For example, one might say, “I want you to take a shower at least every other day.” When expressed in that fashion, the statement puts responsibility on the other person to fulfill the expectation. Often, in these situations, family members are tempted to enforce an expectation by attaching threats. When feeling so tempted, one might say, “If you don’t take a shower at least every other day, I will ask you to move out.” The first problem with that statement is that the person making the statement is taking on the responsibility. He is saying “I” will take action if “you” do not fulfill your responsibility as opposed to giving the message, “You need to take responsibility!” The second problem with that statement is that the person making it may not really intend to carry out the threat if pushed. The threat becomes an empty expression of hostility. Of course, there may come a point at which family members feel compelled to give an ultimatum with the true intention to act on it. We will discuss this situation later.
Do not protect family members from the natural consequences of their actions. Allow them to learn about reality. Bumping into a few walls is usually necessary.
A daughter stuffs a handful of pills in her mouth in her mother’s presence. The mother puts her hand into the daughter’s mouth to sweep out the pills. It is reasonable to prevent medical harm in this way. The mother then considers calling an ambulance because she can see that the daughter is suicidal and at risk of harming herself. However, this option would have some very negative consequences. The daughter and the family would face the embarrassment of having an ambulance in front of the house. The daughter does not wish to go to the hospital and would become enraged and out of control if the mother called the ambulance. A mother in this situation would be strongly tempted not to call the ambulance in order to avoid the daughter’s wrath and to preserve the family’s image in the neighborhood. She might rationalize the decision by convincing herself that the daughter is not in fact in immediate danger. The primary problem with that choice is that it keeps the daughter from attaining much needed help at a point when she has been and could still be suicidal. The mother would be aiding the daughter in denial of the problem. Medical expertise is needed to determine whether the daughter is at risk of harming herself. If the daughter’s dramatic gesture has not been given sufficient attention, she would be likely to escalate. As she escalates, she may make an even more dramatic gesture and face greater physical harm. Furthermore, if an ambulance were not called for fear of incurring her wrath, she would receive the message that she can control others by threatening to become enraged.
A 25-year old woman steals money from her family members while she is living with them. The family members express great anger at her and sometimes threaten to ask her to move out, but they never take any real action. When she asks to borrow money, they give the loan despite the fact that she never pays back such loans. They fear that if they do not lend the money, she may steal it from someone outside the family, thus leading to legal trouble for her and humiliation for everyone else involved. In this case, the family has taught the daughter that she can get away with stealing. She has essentially blackmailed them. They give her what she wants because they are living with fear. The daughter’s behavior is very likely to persist as long as no limits are set on it. The family could cease to protect her by insisting that she move out or by stopping the loans. If she does steal from someone outside the family and faces legal consequences, this may prove to be a valuable lesson about reality. Legal consequences may influence her to change and subsequently function better outside the family.
A 20-year old woman who has had multiple psychiatric hospitalizations recently and has been unable to hold down any employment decides that she wants to return to college full time. She asks her parents to help pay tuition. The parents who watch their daughter spend most of her day in bed are skeptical that she will be able to remain in school for an entire semester and pass her courses. The tuition payments represent great financial hardship for them. Nonetheless, they agree to support the plan because they do not want to believe she is as dysfunctional as she behaves and they know their daughter will become enraged if they do not. They have given a dangerous “You can do it” message. Furthermore, they have demonstrated to her that displays of anger can control her parents’ choices. A more realistic plan would be for the daughter to take one course at a time to prove that she can do it, and then return to school full time only after she has demonstrated the ability to maintain such a commitment despite her emotional troubles. In this plan, she faces a natural consequence for her recent low functioning. The plan calls upon her to take responsibility in order to obtain a privilege she desires.
Each of the cases illustrates the hazards of being protective when a loved one is making unwise choices or engaging in frankly dangerous behavior. By setting limits on these choices and behaviors, family members can motivate individuals to take on greater responsibility and have appropriate limits within themselves. The decision to set limits is often the hardest decision for family members to make. It involves watching a loved one struggle with frustration and anger. It is important for parents to remember that their job is not to spare their children these feelings but to teach them to live with those feelings as all people need to do.