Family Perspectives on Borderline Personality Disorder

Dixianne Penney, Dr. P.H.
Patricia Woodward, M.A.T.

A first encounter with borderline personality disorder (BPD) is likely to leave one reeling: a call from the emergency room or a counsellor at school or college, or a knock on one’s bedroom door at night with a cry for help. As emotions and actions can overwhelm and become overwhelming, family members and friends alike can spin off into their own mini-crises. They ask questions like “Why didn’t we know?”; “What could we have done?”; “Why is this happening now?”; and “Where do we go from here?” Often family members will have opposing reactions, ranging from denying the seriousness of the situation to taking empathetic and sympathetic stances

Getting the News: Dealing With the Diagnosis

Some 15 years ago, when talking with parents and educators about their first encounter with BPD, we heard one phrase repeated so often it became a refrain: “I had no idea what it was all about—If only we had known.” When they shared the news with friends and other family members, the response heard most often by family members was, “What’s that? Never heard of it.” People’s reaction to the diagnosis was one of bewilderment: “Borderline? Is that because it borders on schizophrenia?”

In teachers’ rooms the response sometimes was, “Don’t give me that kind of nonsense. The kid’s oversensitive. Just needs to pull herself together.”

Teachers are in the best position to recognize behaviours that might warrant adult intervention and support, yet their training offers them minimal exposure to the potential effects of developmental problems on students’ behaviour. And there is the prevailing myth that teenagers are, at best, a volatile group of people who will outgrow troubling behaviours.

Today more people tell us that when they talk about BPD they get responses like “Yes, I’ve heard of that”; and “There have been some really good documentaries on mental health and depression on TV”; or “I’ve heard about BPD, but what is it really?” They might note that they have an acquaintance or family member who has or might have the disorder, but “No one really talks about it, you know. It’s as though it’s some sort of secret.”

Speaking out about a personal experience with mental illness takes courage, not only because of the response one might encounter, but because it means dredging up many past memories.

A Mother’s Experience: From the Inside

“Mommy, I feel sad.” I first heard those words when Jesse was 3 years old and in nursery school. In retrospect, I realize my daughter knew before anyone else that she was different. She had friends among the gentle children but wanted desperately to be accepted by the 3-year-old “in group”

When I spoke to her teachers, they said she was just shy, and as one of the youngest in her class she probably was not yet able to keep up. “She’ll grow out of it,” they assured me.

And so the years went by. Jesse grew into a beautiful, willowy young woman. As her nursery school teachers had predicted, she was a high achiever, a talented painter. She was well respected by her teachers and always had a few close friends. Nonetheless, she still saw herself as an outsider.

As Jesse’s description of her sad feelings grew more sophisticated, she asked if I thought she would ever belong. She said she felt as if everyone else knew what was going on, what was happening, how to act, but that she felt “clueless.” This was hard for me to comprehend. She appeared so poised, so in charge of her life.

Jesse had always been a very slender child (just like her father, I told myself). During her teen years, she fooled both her paediatrician and me into believing that she was simply continuing her slender predisposition, because she always managed to stay just at the edge of low-normal weight. Nonetheless, she had acquired many manifestations of an eating disorder: bizarre eating habits, lying about her food intake, a completely distorted body image, and then, at about age 16, severe bulimia.

Drug and alcohol abuse followed. How isolated we all felt! Jesse was so ashamed and was afraid to ask for help. Although we knew something was dreadfully wrong, my husband and I were still in denial. How could it be that our beloved daughter was not only unable to cope with the usual activities of a bright and talented 18-year-old, but also was engaging in self-destructive behaviour?

In terror for our child, we looked everywhere for an explanation. Finding none at the time, we looked inward. What had we done to cause this? Had the genes of her forebears produced these problems (we still weren’t using the term mental illness), or was it the family environment during her childhood? We blamed ourselves. We also experienced for the first time a real (or was it perceived?) sense of stigma, not only from our friends but also from our own families. Our friends’ children were becoming young adults without too many ups and downs and within acceptable timetables. Our nieces and nephews were all excelling at everything they did. What could we say when someone asked, “How’s Jesse?” Although we didn’t know what was wrong with her, we knew we didn’t want to tell anyone what was going on. We stopped sending greeting cards (where it seems one is expected to say at least something about the accomplishments of one’s children). We started withdrawing from our social circle, and our relationships within our nuclear and extended families became strained. Life as we knew it had ended.

The stigma of this disease did not stop with friends and family. Before we found a treatment program that embraced people with the disorder and their families, we found that without listening to us or telling us exactly why they were not interested in treating our child, many clinicians wrote off persons with BPD as being treatment resistant and their families as being overinvolved. As a parent, I frequently felt that, at best, some therapists viewed me as someone whose IQ had just dropped 40 points because I had a child with BPD. Even more shocking and hurtful was the discovery that the major advocacy groups for persons with mental illness had little or no interest in BPD and in some instances even tried to stifle our family’s cries for help and support.

Someone had told me about a cognitive-behavioural therapy treatment, dialectical behaviour therapy (DBT), developed by Dr. Marsha Lineham (1993a, 1993b), for the treatment of suicidal patients with BPD.   It seemed a miracle that this treatment was available in our area and that there was a place for Jesse.

Once a week, multifamily group therapy was also offered as part of this program.   My husband and I joined the group.  Ideally, both the family and the person with BPD attend these sessions, where cognitive-behavioural skills based on DBT are taught to the group as a whole and where family members can practice communicating with one another in a safe setting.  My husband and I were helped greatly by the group to grieve and let go of blame, to mourn and shed the burden of guilt, and to find relief from the additional agony of the stigma imposed by those who have not walked in our shoes.

At the time of Jesse’s suicide attempt, I would not have thought it possible to have the strength to continue to hope for her recovery. Much of the teaching we have received during the multifamily group sessions has been from individuals with BPD who attended the group, most of whom were young women like Jesse. Their insights into what has been helpful to them, how to be supportive without smothering, when to take the initiative and not feel guilty, how to help our daughter fight back against stigma wherever it appears—even if it means standing up to a grandmother, in-law or therapist—have made my husband and me able to take charge of our lives again. In doing so, we have become part of the team that has helped Jesse gain the courage and strength to take charge of her recovery.

 

Reflections on the Family Experience of BPD

BPD as Chronic Illness

When someone develops a chronic illness, the ripples are felt by all members of the family, the extended family, close friends, and employers. Everyone’s behaviour is affected. With some illnesses, it is possible to know how to behave because the illness is defined, the causes are known, the treatment is specified, and the course and outcome are certain. Chronic illness makes overwhelming demands even when the illness is known and understood. When the causes are not clear or specific, when diagnoses are moving targets, when treatment options are limited, and when outcomes are uncertain, the demands and burdens are that much greater.

When someone in the family receives a diagnosis of BPD, it is a lifechanging event for that person and for that family. The family has to deal with the problems common to all chronic conditions, with the addition of factors and behaviours specific to BPD.  The problems families face depend on whether the person with the diagnosis is living at home (no matter what age) or is away from home. If the person is under age 18 or if parents are responsible for the medical bills, then they also may have access to information on treatment. Being supportive is far more difficult if the ill relative is living away from home, has no access to information, and must secure emotional and financial support and negotiate issues of employment, insurance, and Supplemental Security Income.

Furthermore, it is usually not an option to discuss family issues with the relative’s therapist. Therefore, an important issue for families is how to set up a communication channel where emotional and financial issues can be discussed and resolved. If the professionals involved view the family as dysfunctional and the parents as “causative” agents, it is doubly hard for the family to position itself in a supportive role

Finding the Right Therapist

When an ill relative has problems beyond BPD, it is very hard even for the most loving and well-adjusted family to maintain integrity in family functioning. One thing, however, seems to be clear: if the individual with BPD has comorbid issues (e.g., depression, eating disorders, substance abuse, and alcohol abuse) and BPD is not addressed, the changes needed for the person to lead a stable life are harder to achieve. Of paramount importance is finding a trusted therapist who is willing to answer questions, explain the reasons for treatment, and help set treatment priorities, including emergency planning for crises. It is especially helpful if the therapist can work with the person with BPD and family members or significant others in dealing with boundary issues such as spending money, engaging in risky behaviours, and meeting agreed expectations at home and at work.

A therapist can also help the family deal with issues of guilt and blame. Often parents may feel that if they are responsible for causing the disorder, they can actually “cure” the problem. Because it seems that it takes a combination of factors and events to cause an individual to develop BPD, the corollary is that it will take a combination of therapy, support, and medications to enable someone to come to terms with the behaviours that result from the disorder. It takes a high level of training, skills, experience, and caring commitment to lead the person with BPD and the family—individually and at times jointly—through the incremental steps needed to bring about change.

 Dealing With the Stigma of Abuse

The stigmatizing aspects of BPD can permeate interactions with family members, with friends, and even with medical personnel and providers. The research literature and training materials for psychiatrists, psychologists, and social workers make references to the purported incidence of abuse—intentional or inadvertent—occurring among people diagnosed with BPD. If you happen to be consulting a therapist yourself to get help with the situation and the therapist comments that the child in question is acting like an abused child, this can have a powerful effect on your attitude toward family members and close friends. If you are a single parent and you know that you have not been abusive, then where did the abuse come from? If you are in an extended family, how do you then view the other people in the family who may have had access to your child? For parents, how do you then look at your own relationship? Did any abuse even occur? The issue for parents or concerned others is how the very likelihood of abuse and neglect affects their relationship with treatment teams or individual therapists. It is very hard to sit face to face with medical professionals and wonder what they are thinking about you or the family, just as it must be hard for clinicians to face people who may well have contributed to distress in their patient. You can understand the dilemma, but it is nevertheless very painful. Combined with the experience of dealing with the common reactions and the stigma of having a mentally ill person in your life, such attitudes of accusation add immeasurably to the isolation and burden of the family. In this new climate of suspicion, it is difficult to do what you must do: that is, to put your own feelings aside and focus on getting the help needed and providing the support the person with BPD requires.

 Making the Changes in Ourselves

Remaining optimistic and realistic takes determination and parallels what is being demanded of the person with BPD who, over extended periods of time, is being asked to make complex internal changes in monitoring emotions and patterns of feeling and thinking. Likewise, as family members we need to monitor our emotions and be aware of our own thinking patterns. It is very difficult to watch someone you care for experience intense psychological pain, and it often takes an act of faith to witness repeated setbacks. If we see behaviours as deliberately wilful and hurtful, we will react to that. If we see the behaviours as reflecting a deficit in skills rather than a deliberate purpose, it provides more motivation to keep us alert to emotional cues and attentive to our own physical and mental well-being. We have learned that people with BPD lack self-soothing techniques. If we are to offer good modelling of emotional health, then we, the ones trying to be supportive, need to make sure we maintain good physical and emotional health. An old adage about being a parent cautions that you cannot look after someone else unless you are able to look after yourself. Parents and other family members may not think of themselves as “caretakers,” in the mental health sense of the word, but that is in fact what we are. This means that we must learn to care for ourselves while striving to create a workable, comfortable family environment for our loved one with BPD.

This is an exerpt from Understanding and treating borderline personality disorder : a guide for professionals and families, edited by John G. Gunderson and Perry D. Hoffman, 2005

 

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