Daniel Knoepflmacher, MD (Host): Hello and welcome to On the Mind, the official podcast of the Weill Cornell Medicine Department of Psychiatry. I'm your host, Dr. Daniel Knoepflmacher. In each episode, I'll be engaging in thought-provoking conversations with experts on mental health, neuroscience, and other important topics on the mind.

Host: What follows is the second episode of a two-part series on borderline personality disorder or BPD. In part one, we defined BPD and discussed how it's diagnosed. On this episode, Paula Tusiani-Eng and Frank Yeomans describe treatments for BPD and highlight resources available to support those who struggle with the condition. We rejoin our conversation as we begin to discuss what treatments are effective for treating borderline personality disorder.

So, this diagnosis has been given, what about treatments? What are the next steps for these patients?

Frank Yeomans: We are living in a period where fortunately a number of effective treatments have been developed and continue to be developed. We have what we call the big five, which are the evidence-based treatments that have had the most attention. Those are dialectical behavioral therapy, transference-focused psychotherapy, mentalization-based therapy, schema therapy and good psychiatric management. They each come from a particular tradition within psychiatry or psychology.

In DBT, dialectical behavioral therapy, which is the most widespread and most accessible to patients, that is it's the most broadly practiced, the core idea is about emotional dysregulation. And the person, as Paula very nicely described, has a kind of a rawness. It's like they're an exposed nerve and their emotional reactions are extremely intense and the goal is to help the person better regulate their emotions and get a handle on them and deal with them, so they don't get expressed in such exaggerated forms.

When we go to transference-focused psychotherapy, which is what I practice and teach, we add to that emotional dysregulation the question of how does the person perceive an interaction? What is the meaning they see in things? What is their way of experiencing a trigger event that leads to the dysregulation? So, it's dealing with dysregulation, but also what was the perception or misperception that triggered the intense emotional state?

Mentalization-based therapy is overlapping, I believe, to some degree with transference-focused psychotherapy. It's about helping the patient better understand the contents of their mind in a situation where people generally experience emotional states without a clear cognitive appreciation of how they are thinking. They just have the emotion without the cognitive representation of it. "Let's help you get to know the contents of your mind, what's going on in your mind and how you think, how you can imagine and appreciate what's going on in my mind." As I said, that overlaps a great deal with TFP. But in TFP, when we get to the later stages of therapy, we're dealing more with a basic conflict between loving feelings and aggressive feelings that I think isn't addressed as fully in the other treatments.

Schema therapy is a combination of some cognitive behavioral methods and also some concepts that seem to have a psychodynamic element, so some of the other approaches. It has a lot to do with how the patient is experiencing themself in relation to another. But instead of going more deeply into the emotional core of this, they try to help the person correct the misperception,

 Schema is more about correcting a cognitive misperception. TFP is more about grappling with the deep emotion that the misperception activates.

And good psychiatric management comes from the John Gunderson McClain group. And Dr. Gunderson, who unfortunately passed away couple of years ago, is a pragmatist. He took what he thinks is valuable from all of the methods, said, "How can we distill this into the simplest formula so that all of those therapists who don't have time for advanced training in a model can get the most essential elements?" And it's this pragmatic approach, which is usually a first good pass for patients. And if they don't respond to that, they can go on into one of the more sophisticated treatments.

Host: I want to emphasize that you've outlined five treatments for borderline personality disorder, which shows you that there are many to choose from. And I think in several medical conditions or psychiatric conditions, you don't always have that many options. Though there's one other notable thing that I want to highlight, which is we talked about a psychiatric diagnosis and we talked about treatment and they were all psychotherapies. Psychiatrists tend to also prescribe medications. I'm wondering what role there is for medications in borderline personality disorder?

Frank Yeomans: A small role. It's interesting, to my knowledge, BPD is the only psychiatric condition for which the official guidelines from the American Psychiatric Association emphasize that psychotherapy is the treatment of choice, not medication. It's, as I said earlier, a complex condition. Medication can help with certain aspects of it. Medication might diminish to some degree the anxiety or the depressive states, but that can be helpful in making the person accessible for the psychotherapy, which is necessary to really get to the core, to the root of the condition.

Paula Tusiani-Eng: Yeah. And just to build on what Frank said, is that the good news here is that there's a lot of evidence that people get better with these treatments. More than 90% of people with BPD, when they have access to care and support, can get better and live a meaningful life, and that's a really good prognosis. There are also some challenges in accessing these treatments, right? Because what is common to all of them, except for good psychiatric management, is that they're long-term and they're intensive. So, that means for some of the modalities treatment twice a week, individual therapy, sometimes there's groups, well, like with dialectical behavioral therapy, there's also a group format.

But most of these first line wonderful evidence-based treatments, you know, the protocol's usually at least six months to a year. Feel free to correct me, Frank. But they're long-term and intensive. People with BPD sometimes, depending on the severity of symptoms, also need higher levels of care, you know, like day treatment programs, residential care. So, these treatments can be hard to access because of their cost, which can be prohibitive, and sometimes they're not covered by insurance companies.

Host: Paula, I'm glad you added that because it relates to a question about what resources are out there for individuals struggling with BPD. As you pointed out, we may have several evidence-based treatments, but they don't do much good if people don't know they exist or how to access them. So, one effort to address this gap is the New York Presbyterian BPD Resource Center, which your family helped create. Can you tell us what the resource center provides and how it can help people with BPD?

Paula Tusiani-Eng: Sure. I can talk about the New York Presbyterian Hospital BPD Resource Center, which maintains the largest database in the country and in the world of BPD-trained clinicians. It's staffed by a social worker that, you know, if you are in need of a diagnosis and you're trying to find a clinician or a residential care facility or whatever your need is, depending on where you live, you can call or email or search the NYP website. There's actually a search engine now where you can go and look based on your geography and you could say, "Hi, my name is Jane Doe. I live in Montana. I think I have BPD. I'm looking for a provider. Can you search the database for me?" Now, it's not a golden ticket because, you know, we know there's many areas of the US and in the world where it is hard to find providers unless you're living near a teaching university, et cetera. But the resource center has really done a very fine job over the years of putting together the best resources that are currently available and always adding them to that list. So, it's a free resource to the public.

One of the reasons why my family felt so strongly about it is because, again, when we were struggling, of course in the late '90s, this was pre-internet where you couldn't Google BPD, you know, I have very distinct memories of going into Barnes and Noble to the psychology section, trying to find books. We couldn't find books, you know. So, the good news is there really is so many more avenues for finding information about BPD today through the internet, through social media, et cetera. But with this disorder, it can still be a challenge to find people that are properly trained because it is a disorder in which there are severe symptoms.

And really, as Frank said, you need to really work with somebody that can make a proper diagnosis because that can be the path forward to recovery and it can save lives

Host: Absolutely. It's really important for people with BPD to find providers who understand them and their condition, and the BPD resource center is there to help people who may not otherwise be able to find help. It's a great example of creating something to address an unmet need in the community. What about Emotions Matter, the nonprofit you started? Can you tell us about that?

Paula Tusiani-Eng: With Emotions Matter, one of the things that's part of, you know, my family's story is that we also wrote a book, we wrote a memoir about our family story that came out in 2013 called Remnants of a Life On Paper. It was my mother's story of what was going on in the family and then my sister's story of what was going on in her head during her journey. When the book came out, so many people would come up to us because we would go and do book talks and try to raise awareness about BPD and people would come up and say, "Oh, I have BPD" or "I know somebody with BPD" and "How can we support you?" And, you know, we didn't really have good answers because the resource center was all about giving people education and connecting people with clinicians. But we realized that there was more that was needed in the community, right?

And so, that sparked myself and other family members and people with lived experience to start a nonprofit organization in the late 2015 called Emotions Matter. We did a series of focus groups over about a nine-month period to try to listen to the needs in the community because we knew there were other organizations out there that were doing really fine work in the BPD space, particularly around research and family support. And what came out of those focus groups was that there really was no organization for people with BPD themselves to find support, to receive stigma-free information, and to sort of get involved in advocacy as part of their recovery. Because as we know from other mental health disorders, that recovery happens in many ways. Treatment is one part of recovery, but finding community support, finding a life worth living, contributing to society with the disorder when you reach middle and later stages of recovery can be a huge part of maintaining your recovery goals and being able to help someone else.

So at Emotions Matter, our mission is to support, educate, and advocate for people with borderline personality disorder. We do this in several ways. You know, one is we provide stigma-free information for people with BPD. Because we know that when you go and google BPD, the majority of the information that you get in a word cloud or in a Google search is fairly negative, right? And when your brain is already coded to or predisposed to negative thinking, that's not good. So, you already have internal negativity, then you want to take in external negativity, that's not a good path to recovery, right? So, we start with providing people with stigma-free information that's accurate, that talks about recovery first before all the scary statistics. You know, we try to put good information out to the public, so that it's hopeful and so that people say, "Oh, okay. This is what's going on in my brain," but there's treatments and people get better. And now, I have the information that I need to take the next steps to figure out how to get better. And we provide this information through resources, through publications, through videos, through social media, et cetera, through the website.

We have peer support groups. That's the second way that we really help people with BPD, because we know that when you're living with these types of thoughts and this, you know, internal chaos and sense of self that can be very negative as Frank was explaining before, sometimes meeting just one other person that has BPD, that's on the road to managing these complex behaviors and emotions can really change someone else's mindset, right? All of a sudden it's like, "I'm not the only one. There's another person that's managing, there's another person that's doing it. Look, they're engaging in some of these difficult treatments. Maybe I can do it too."

We do have peer support groups. We've created our own peer support model where we have people with lived experience that run support groups online on Zoom seven to 10 times a month. We also have other programs like writing workshops, art shows, educational programs, we run a peer conference. So, any way that we can get people to meet other people in recovery and to allow people with lived experience to mentor others on the road. Because the good news is, as I was explaining before, when my sister was alive 25 years ago, these treatments were not available. But they really became available in the mid-2000s, these treatments became more available. So, you know, 15 years later, if one to 2% of the population has BPD, there are millions of Americans that have BPD and that are living in stages of recovery. But it can be very hard to see public models of recovering because of the stigma. So, we believe it's really important to sort of lift up that people get better and come meet some other people that have gotten better.

We also sort of validate people's real experiences of the barriers to care. You know, we believe it's really important when people come to us and they say, "I'm really struggling with finding a provider," or "That person doesn't like me," or "That person didn't treat me with kindness. When I went to the emergency room, they sent me home." We say, "Yeah, you know what? The system is not fair for people with BPD." We understand, we validate the real world experience. But then, we try to change that narrative by saying, "Okay, well, here are some tools and here's some scripts to call your provider, and here's a resource list. Call the New York Presbyterian Hospital BPD Resource Center to find..." So, we try to acknowledge the real world experience of invalidation, which is also part of what the population experiences in addition to possibly maybe not having the support in their own environment to take the steps that they need to recovery.

And then, we really have a real empowerment approach, right? That our organization is built by and for people with BPD. You know, people on our board have lived experience and we believe to change the face of the disorder and to address stigma. And Frank is a former board member and been with Emotions Matter since its beginning. We believe that multiple stakeholders need to work together. So, that is clinicians, people with the disorder, family members, to really understand that we are a community that can address this together. We're not independent silos. That really comes from my own perspective as a family member. With my sister, I always understood that she was just somebody suffering. She wasn't all of these labels, she wasn't manipulative. And did she do things that sometimes were hurtful? Yeah, but she didn't want to do those things. And so, I always understood that, that we're not really seeing people for who they are, which is human beings that have the disorder, and they want help. So, we treat people like human beings and that's how we're going to address this thing.

Host: Well, thank you for describing these two really important resources, both the BPD Resource Center and Emotions Matter. And we're going to have links to both of these attached to the podcast so that people can have access to them.

Frank Yeomans: I just wanted to add to what Paula said, the important work these two organizations are doing. I think one bottom line is the public should understand, particularly in May, which is BPD Awareness Month, that BPD is a major illness that requires more resources than it is given. It's probably closer to 2% than 1% of the population, but it's hard to get coverage for the treatment. People say the treatment is long and the treatment is expensive. But if you take the cost of one operation in a hospital that takes place in one day, that could probably cover a year or two of appropriate therapy for a BPD patient. And the BPD condition is as serious and as major a health problem as a cancer for another person. So, one of our messages is please understand this is an illness that doesn't get the attention and doesn't receive the resources that are necessary to help those who suffer from it.

Paula Tusiani-Eng: And just to build on that thought, also to remember that in this age where we're very aware of diversity and inclusion, that most of the people that can't get treatment are from communities of color and underserved communities around the United States. And the cost of not treating BPD, as Frank said, it's cheaper to give people six months of treatment than it is to pay for six months of emergency room visits, or it is to pay for homelessness services when people are on the streets, or to pay for people to be incarcerated, which can happen when people with BPD symptoms are elevated and it could lead to petty crimes such as shoplifting, et cetera. You know, our answer instead of mental health treatment is sometimes moving people through other systems.

And people are really hurting with this disorder. There are social costs to not giving people treatment. And to remember that Americans who are suffering from borderline personality disorder deserve the same kind of care as any other major mental illness with the kind of severity of these symptoms, right? So, just remembering that there's an aspect of justice here because people with BPD really do experience discrimination regularly when insurance companies deny them. You know, I know people with BPD personally that sadly have died on waiting lists, waiting for their disability to come through.

Not being able to get insurance. People are fighting with their insurance company to try to get coverage. People, when their symptoms are elevated and they need care and they're struggling with suicidal thoughts, if we really want to help people survive, we need to get them care quicker. Because a lot of places, you know, and New York City's a good example where sometimes people need to spend six or 12 months on waiting lists to get Medicaid covered, dialectical behavioral therapy or one of these treatments and just to say it's not okay, even though we know that there should be parity of mental healthcare and physical healthcare, there certainly is a double standard with regards to BPD and other psychiatric illnesses.

Host: Thank you both. I mean, you're emphasizing how there are already inequities in mental healthcare. There's structural issues that exacerbate those. But here, you have a diagnosis where there's so much stigma and misunderstanding that that even gets magnified more. I think it's wonderful to have you guys speaking about this as we go into BPD Awareness Month and introducing these resources, which as I said, will be linked to this podcast.

I want to end with what I do at the end of every episode of this podcast. And I think it's important because it humanizes the guests that we have on this show and talks about mental health from a personal level. And I want to ask each of you what are the most important things you do to maintain your own mental health, and I'll start with you, Paula.

Paula Tusiani-Eng: Sure. I mean, definitely family and relationships, being able to spend time with my husband and my children as they're growing up. It's certainly a release and a place of comfort and joy. Movement and exercise, although I'm at an age where I have to exercise to be able to move, sitting in the chair all day. But I would say just even a few minutes of sometimes stretching can be really helpful. And then, you know, I think being outdoors and certainly in this post-COVID age, there's nothing wrong with a little bit of binge watching TV and escapism, which I think is sometimes good to to shift the mindset.

Host: Everything in moderation, of course. Frank, what would you add for yourself?

Frank Yeomans: Well, I would repeat what Paula said, but focus first and foremost on relationships. Often people say, especially my friends or people who don't live in New York, "You live in New York. There's so many things to do. What do you like to do? Do you like the museums? Do you like the Broadway shows?" And when it comes down to it, what I like most is going out and having an evening out with friends. Like, Paula said, home life, family life, life with your partner, and then reaching out and having a broader network of people who you just enjoy being with. I think that's really the key to finding a balance in one's life and satisfaction.

Host: Thank you both. Paula Tusiani-Eng and Frank Yeomans, it was an absolute pleasure having you join us on this episode of On The Mind. You helped make a complex but very important topic understandable for us. And you've both done such tremendous work educating so many, including hoping those listening to this podcast about borderline personality disorder. And I have to say your dedication and your compassion really came through today in all that you said. Your efforts have helped provide hope, support and meaningful recovery to many people suffering from borderline personality disorder. So, thank you very, very much.

Frank Yeomans: Thank you for the opportunity, Daniel.

Paula Tusiani-Eng: Thank you so much.

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