While again watching the powerful BPD documentary, ““Back From the Edge - Living With and Recovering From Borderline Personality Disorder,” I was appreciating how well it addresses central questions that individuals and families ask about this painful disorder of emotion regulation. I really wanted to encourage the members of our DBT Family Skills Training to view this video on YouTube and benefit from the support it offers. My hope is that transcribing even a few of the responses could increase motivation just enough! What follows are excerpts from caring, thoughtful responses to these topics: 1) Why does my loved one harm her/himself?; 2) Sometimes, my loved one’s behavior feels manipulative to me. Is it?; 3) What is BPD and how does a diagnosis matter?; 4) Where does the family fit?; and 5) Is there hope to get better?
Please know that this is but a fraction of wise guidance offered on many topics, such as the biological basis for this disorder. Here are the family members and professionals included in the excerpts that follow: Christina Knight (CK), Kiera Van Gelder (KVG), Marsha Linehan (ML), John Gunderson (JG), Wayne Fenton (WF), Perry Hoffman (PH), Cindy Knight (CiK)
Why does my loved one self harm?
CK. Anytime that I’ve cut, it's been because my emotions were so intense that I needed a different outlet for them and to inflict physical pain on myself was a relief because I could focus on the physical pain and I didn’t have to focus on the emotional pain I was feeling.
KVG. To me it was like a cigarette break in a sense... a way of being able to manage feelings that I hadn’t found a way to do yet.
ML. There's no doubt about it at all. Cutting and physically damaging the self regulates emotions in this group of people. No one is clear on exactly why it happens and there's a lot of research on it.
JG. These self destructive behaviors of borderline patients can definitely serve to help them alleviate feeling states that they can’t stand... oftentimes, feeling states that they cannot even articulate.
ML. On the perfectly pragmatic side, the reason it’s a bad idea is it means you never solve the problem that generated the emotion in the first place. So it becomes like taking drugs. It's a way to avoid, distract, or get out of something, but it isn’t a way that makes you look at it and figure out how to solve it.
Are we, family members and friends, being manipulated?
KVG. Manipulation assumes someone has the skill to think about and then execute a plan. Manipulation in that sense, I think, cannot be applied to people with BPD because its all about knee jerk reactions and desperately trying to get something to feel secure and safe and okay again. So, for me when I was sending letters written in blood to people, one could say that was a tad manipulative. On the other, you could just as easily say I had no clue of what I was doing, I had no idea how to get people to pay attention to me in ways that would work.
ML. Manipulation is when you consciously try to get someone to do something for you without them knowing you actually got them to do it. These individuals very rarely have the interpersonal skills to figure out how to get you to do things in an unobtrusive way.
What is BPD and how does this diagnosis matter?
CK. The staff doctor treating me came in and told me, “I think that you have Borderline Personality Disorder and I immediately thought that meant I was on the borderline between sanity and insanity. He said, “No, that’s not what it is. And he explained the criteria.”
KVG. I was asked...Do you find that you fear abandonment? Will you desperately try to avoid it at all costs? YES. Do you find that you are really emotionally labile, up and down, and sensitive to the things around you and rejection? MY GOD, YEAH. Stormy relationships? Do you idealize people and when they disappoint you, do you devalue them? Do you experience paranoia when you are under extreme stress? YEAH.
JG . People, more often than not, find it a great relief to be diagnosed.
ML. "Oh my god, I’m something." The something is understandable. Somebody could actually understand me and if they understand me, maybe I can understand me, maybe other people are like me which means I am not so alone. I’m not different from everybody in the world. I’m not an outsider every place I am. And also there’s an enormous relief that there might be a treatment.
Where does the family fit?
WF. It would be fair to say that BPD can be hell for families. There’s something in the nature of this condition and its symptoms that can draw not only from families, but from trained clinicians, unhelpful responses.
ML. From my experience, the most common response other people who are around people meeting criteria for Borderline Personality Disorder is that their response is to say “shape up.” They know the person is emotional, but they don’t know why. They really don’t have the fundamental understanding that the person is actually doing the best they can. The real tragedy for the individual is they say “I can’t regulate” and the other person says “Yes, you can.“ So, of course, then they start feeling worse about themselves thinking that they can, but they just don’t want to.
CiK. What really helped me was when I realized it wasn’t about me, that I wasn’t necessarily what she was angry at and the target of it, but I was just there to be somebody she could vent on and all of this feeling that was about something else.
CK. She just understands that I need to get it out and once I get it out, I feel a lot better.
JG. We have guidelines for families which suggests that when their borderline offspring or family member has one of these excessively angry reactions that they listen carefully, look for whatever is true about it and by validating that part of it which makes sense, it will calm the person down. To address the part of it which is excessive and inappropriate can and should only be done in a context of when the borderline person is calm.
PH. When you have a child with this disorder, it's not something you talk about at weddings. You often don’t talk about these kinds of things, so when family members go to a support group, it's an incredible process that happens for them because they feel that someone else understands them and understands what they’ve gone through.
KVG. BPD is so much a disorder of relations and the recovery really involves being able to get back into communities and have relationships and tolerate the stress and build up a life for yourself again.
Is there hope to get better?
PH. When family members call me for the first time, the first thing I want to give them is hope. I want them to know that people with this disorder get better. Borderline Personality Disorder is often called the good prognosis diagnosis and that’s because people get better. People recover from this disorder, they manage their lives in effective ways, they have children, they have careers.
ML. The emotionality that they have and the tendency to react quickly will probably always be there, but you can build a corresponding tendency to be able to regulate.
KVG. I developed the vocabulary to say to people, “I get triggered because of this or I’m having a borderline moment right now. I think you’re rejecting me.” When you get the diagnosis and a set of language to bring awareness to the interpersonal dynamic, things that used to destroy relationships become opportunities to build a new level of communication.
“Back From the Edge - Living With and Recovering From Borderline Personality Disorder” was created by the BPD Resource Center at New York-Presbyterian. Information on this wonderful resource can be found at bpdresourcecenter.org. Additional information on BPD and families at neabpd.org.