In this week’s episode of “It’s All In Your Head”, you’ll understand what it’s like to support someone with borderline personality disorder (BPD). You can read the transcript below and also watch the recap episode.
Jackie Colbeth: Hi, welcome to Med Circle’s It’s All In Your Head podcast. I’m your host Jackie Colbeth, and it’s great to be with you. Today we’re going to talk about the often misunderstood diagnosis of borderline personality disorder from a loved one’s perspective with Paula Tusiani-Eng. Paula and her mother, Bea Tusiani wrote an awesome book called Remnants of a Life On Paper, a Mother and Daughter’s Struggle with Borderline Personality Disorder. A memoir about her sister’s struggle with BPD. She is also the founder of Emotions Matter, which is a nonprofit organization that focuses on supporting, educating and advocating for people impacted by borderline personality disorder. This is a part one of a two-part BPD series. Part two will feature Sarah Rosenberg, who lives with BPD and was greatly impacted by Emotions Matter and has gone on to become an active member in the organization today. Paula’s an inspiration to so many and we’re so excited she took time out of her busy schedule to chat with us. Paula, welcome to It’s All In Your Head.
Paula, thank you so much for being here today to talk with us and our audience about borderline personality disorder.
Paula Tusiani-Eng: Thank you for having me.
Jackie Colbeth: Of course. I think it’s very important just to let the audience know, lived experience isn’t only relegated to the person or the patient who’s being diagnosed. So we’re thrilled to have you on and you’ll be speaking a bit about your sister’s experience, but we’re so happy to have you on as a loving family member to share your experience as well. If you could start out, if this is easiest, how you first learned about borderline personality disorder?
Paula Tusiani-Eng: Sure. So my younger sister, Pamela, was struggling with mental health issues when she was in college. And in 1998 as a junior in college, she had to be admitted to the hospital. She was having what, at the time was we were told was a breakdown. And at that time we really didn’t know where this was coming from. It was sort of out of the blue. She was experiencing some depression and multiple hospitalizations later, about six months into her journey when some self-harm symptoms started, suicidal thoughts, difficulty with impulsive behaviors and expressing herself in relationships. She finally got a diagnosis of borderline personality disorder, and this was back in 1998, 1999, so it was some time ago. But that was the first time myself or my parents had ever heard of borderline personality disorder.
And back then it was almost like pre-internet. So I distinctly remember we are in New Yorkers and at that time there was a Barnes and Noble on the East Side. It’s no longer there. But I remember going with my parents when we got this diagnosis and we went to the psychology section of Barnes and Noble. We looked at every book and we tried to find something about borderline and we couldn’t find it. So fortunately there’s a lot more knowledge about the disorder today than there was back then, but that’s how I came to know what it was.
Jackie Colbeth: Yeah. It’s definitely, and that is certainly how Med Circle as a whole, the whole mission was when I was diagnosed with Bipolar 2 Disorder. There really wasn’t … That was early 2000s. And to your point, there really was no great attainable information. There weren’t eBooks. I too was at Barnes and Noble ripping through the sections, but it was hard to relate because it wasn’t necessarily someone offering their experience. Maybe doctors wrote it. So it was really hard to consume. And knowing that a sense of agency for a family or anyone is diagnosed, I think is half the battle with educating them. So I really applaud you guys at that time for going to the lengths to consume what you could and what was out there with that. I’m hoping you could talk to the audience a bit about Pamela’s experience with BPD.
Paula Tusiani-Eng: Sure. So once we got that diagnosis, my parents worked really hard to try to find providers that could treat her. And back in the late ’90s there was very little available for BPD specifically, the treatments for this disorder really only were emerging in the ’90s. They were being studied in the 2000s and they didn’t really become available to the general population until really the last 20 years or the last 10 to 15 years. But at that time, she was in a number of hospitalizations for her symptoms. The symptoms that she struggled with the most were really self-harm, suicidality, struggling in interpersonal relationships, but also at the core really struggling with her own sense of self and not knowing who she was in the world.
And so, to keep her safe, my parents had to try to find residential care for her where she could have a higher level of care. And in those settings, she was being treated for symptoms of BPD, like depression or anxiety. But she wasn’t really being treated for the BPD itself. Again, at that time, some of the treatments that were available today didn’t exist. So she also, in her journey had a lot of tremendous strengths. At the same time that she was struggling from severe symptoms. She also was an artist. She loved to draw. She was an incredible poet and writer. She was a really dynamic friend and part of every friend group, often the life of the party. And so she had a lot of strengths on her journey, but unfortunately it was her symptoms of lack of sense of self and emptiness, chronic emptiness on the inside that continued to linger even as some of her behaviors continued to stabilize and come under control.
My sister passed away in 2001, not because of suicide or overdose, which is traditionally what’s associated with BPD loss or death by BPD. She died because of a medication error. One of the medicines that she was on had some side effects and it wasn’t being properly managed. She had a rare stroke, a side effect from one of her treatments. And so when my sister passed away, this kind of left my family into this vortex of incredible trauma because we had just been spending three years of our lives trying to keep my sister alive and figure out what BPD was. And then when she passed away because of really negligent mental healthcare, we were now on another journey to sort of figure out what happened to her. Where there were mistakes in her care. There was lengthy litigation that happened in the subsequent years after her death.
Jackie Colbeth: Upon Pamela’s death, obviously it’s a tragedy, families are struggling. I’m wondering if you could tell us a bit more about what the grieving process was like for you and how you worked through that and began to heal yourself.
Paula Tusiani-Eng: It was really a trauma because of the way Pamela died. We were involved in lengthy lawsuits against the hospital where she died and also the facility where she was living because of the mistakes that were made in her care. So the first couple of years we were just trying to figure out how did this happen? How did this happen? This wasn’t supposed to happen. We were trying to grapple with many feelings of guilt and blame, and we should have been there. We should have been more on top of her care, even though the truth is we were as on top of her care as we could have been. But I would say the first couple of years it was really just so painful and traumatic, especially for my parents. I was in my late 20s when my sister passed away and at a different stage in my life, I wasn’t involved in her day-to-day care, but they were extremely involved every step of the way.
Every hospital, every doctor, they kept copious notes in fact. Writing everything down every time they spoke to a doctor, every time she was in and out of a facility, they maintained a high level of care with her. So it was really devastating for family members who are caregivers and loved ones of people with BPD. Family members are in the trenches every day helping the person with BPD manage their symptoms. And it can be exhausting when you’re trying to help somebody from the thoughts in their mind that they can’t control, especially if every day they’re struggling with suicidal thoughts and you’re trying to keep that person safe from themselves. And so we had already gone through multiple traumas over this three years that she was sick. In and out of hospitals dealing with… She also struggled with addiction. So there were a lot of aspects to the disorder was really were hard for our family to manage.
And then after she died, it was definitely what people call today to be a complex grief because we were now grieving … When you’re always able to save one, someone from themselves. My sister had had multiple suicide attempts and we were in the role of, as family members of always getting there in time, always making sure we can get to the hospital so the stomach is pumped and so she would survive. And then when you’re not there that one time, it’s absolutely devastating. So the grief that first couple of years was just really trying to understand what happened, why did it happen, and dealing with that sort of shame, blame and guilt that a lot of surviving family members feel. At the same time, we had to grapple with the fact that, it wasn’t all our fault, that the system had failed us. And that was where we started to say, “Hey, we need to tell the story in a meaningful way, so this doesn’t happen to other families.”
And it was raw. It was raw the first couple of years. And so my mom is a writer by trade, her training and her career. She was a freelance writer and journalist for the New York Times when I was growing up. And so for her, part of her grieving was I knew that she needed to write about this, she needed to get it on paper. And as I said all the years that my sister was sick, my parents, because they are reading and research was part of the path to try to help her. So they were constantly taking notes. And so when she passed away a couple of years later, we went into her room and there were just boxes of medical records and diaries and notes and paintings. And we said, “How do we make sense of all of this? How do we tell this story?” when we got to a place where we could tell it.
And so that was what sort of led to a memoir. My mom and I wrote a book called Remnants of a Life on Paper, A Mother and Daughter’s Struggle with Borderline Personality Disorder. And one of the things that’s interesting is my sister kept copious diaries, which we really didn’t know about until she died. When she passed away, we found dozens and dozens of journals. And so when we read these journals, we realized that we had an inside view of what was going on in my sister’s mind during all the phases of the illness. At the same time, we had my parents’ notes, which were chronicled daily about what the doctors were saying and what was happening from their perspective. And so we decided that we would create a memoir with Pamela’s voice because we really wanted her included in this story. And then my mother’s narrative going side by side with the trial that happened after the depositions from the trial that happened after her death so that we can try to not just shed light on the disorder from the person’s perspective, but then show the family perspective and then more globally the system and how the system wasn’t really set up to help Pamela survive.
Jackie Colbeth: Yeah, I have to share with the audience, I’m a voracious reader, admittedly and Remnants of a Life on Paper I read in one sitting, I remember putting it down to make dinner so I could eat while I was still writing the book. And what I found just magical about it really was the beautiful juxtaposition that you had mentioned of getting to hear Pamela’s voice in getting her descriptions of how she’s feeling, but also at the same time getting another perspective as well from the family. And many times that is sort of left out in the juxtaposition I just thought was so beautiful and so compelling that I think everybody should pick up this book whether or not anybody with BPD or not. But I must tell you, I was exceedingly personally moved by this book. I’m sure I’m not the only person that felt this way. So I’m wondering if you could share a little bit more about what the impact of the book was. I know how nerve-wracking it can be, and then when it’s out into the universe, you get all sorts of feedback. And I’m wondering if you could shed some more light on what you saw as the major impact after it was published.
Paula Tusiani-Eng: Well, I mean this was a labor of love. As I said, we self-publish this because we felt like we needed to tell our story and we had the capacity to do it. And truth be told, our story is that my parents were fortunate enough to have the resources to try to give my sister the best care that was available at the time. And we felt like we needed to share that families, I think there’s a lot of assumptions in society, particularly with borderline personality disorder. And at that time that my sister was diagnosed in the literature, there was a lot more about people with BPD coming from abusive homes, the abusive mother causing BPD. Now that’s no longer corroborated by research. Only 30% of people with BPD can have a traumatic background or come from an abusive background, but it’s certainly not everybody.
And we were a very loving, intact family. It doesn’t mean we were perfect, but I think we also wanted to tell this story to be able to show how everyday families can be affected by mental illness like BPD. And because I think that there’s often an assumption that this only happens to certain kind of people, and we felt like we needed to break the stigma that personality disorders are not unlike any other mental illness. There’s often a biological or genetic component. There’s often an environmental component. There’s a psychological component that the person, the neurobiology of the brain just works differently. And we were all raised in the same family and my brother is fine and I am fine. And my sister just had a different neurobiology, a different wiring in her brain. It made her more susceptible. And she had some experiences that of course may have been triggering to sort of certain symptoms of the disorder coming out, but we felt like we needed to tell that story.
So when we went on this journey of self-publishing in the beginning we were like, “Okay, we’ve got to get this story out there.” So the first couple of years, 2014, 2015, we would go do book talks in the community and in libraries for mental health organizations. We would go to hospitals just to try to tell our story and raise awareness. And when we were at these events, people would come up to us and say, “Oh, your story is our story. Or we know someone with BPD or I have BPD myself. And how can we’re so drawn by Pamela’s story or your family’s authenticity mean my mom and dad were so brave to put this book out to the world because we made a very conscious decision as a family to be brutally honest.
And my sister’s diaries were not written for public consumption, and we really didn’t edit them. We just let them lie even though there were hard things to see and hear and read in there. So we felt that it was just important to get it out there. And so once it was out there, people started to come up to us in a very organic way at events and say, “Oh, we read your story and we’d like to somehow get involved.” And we didn’t really have a good answer for that because our intention was not to start a movement or to make any change more than just initially telling the story. But the more people came up to us and said that they really related and that they wanted to do more for people at BPD really caused us to be thinking more broadly about how we can use Pamela’s story for good and for change.
Jackie Colbeth: Something beautiful that was born out of this, in addition to the book is you and your family decided to start an unbelievable charity called Emotions Matter. And I’m really hoping you can talk to our audience a little bit about the genesis of how that came to be and the great work that you’re doing.
Paula Tusiani-Eng: Sure. Thank you. So first, I mean I should also give credit where credit is due, is that with the settlement from the lawsuit in 2004, my parents founded the BPD Resource Center at New York Presbyterian Hospital because their biggest concern in navigating my sister’s care was not being able to find trained providers for BPD. And so they started their own effort on the part of our family to try to help people find providers. And that still exists today. And so I was never involved on the ground in that effort, but as I started to, as part of the grief journey, help my mom write the book. And when the book came out and people were coming up to us and talking about their own experiences, that was a turning point for me where I realized, Hey, maybe we should do something because it’s not enough just because Pamela didn’t survive, don’t people today with this disorder deserve a shot at living? Don’t they deserve more?
And a lot of the issues that our family faced 22 years ago, 23 years ago, they still existed and they still exist today. And so what happened was in 2015, in May of that year, NAMI in New York City, the National Alliance on Mental Illness, they have a walk every spring at the South Street Seaport and we decided, let’s form a team called Mothers and Others Walk for BPD. And we invited all these people randomly that we had met at our book talks and we’d be kept their emails. And honestly, that day I thought 10 people would show up and it would mostly be like our family. And lo and behold, thank you social media, I suppose 60 people showed up.
Jackie Colbeth: Wow.
Paula Tusiani-Eng: Everyone was wearing T-shirts for BPD, there were signs and posters and in a city of 8 million New Yorkers that day walking in New York City, I met two of my co-founding partners and that also had loved ones with BPD, met other people with BPD that day. And after the walk we said, “Hey, maybe we should start a nonprofit for people with BPD to raise awareness and improve access to healthcare, to support recovery, et cetera.” And so that started us on this journey. We incorporated as an organization at the end of 2015 and then launched with a series during 2016 of focus groups to really ask people in the community how we could be of help. And that is when we started to clarify our vision for the organization.
Jackie Colbeth: Paula, usually people after walking and doing these large walks just want a bowl of pasta and go home and [inaudible]
Paula Tusiani-Eng: That was it. Well, we all kind of made this connection as you’re walking, you’re telling your stories, you realize how much you have in common, and we’re like, okay, let’s go to lunch. And as a group, we wound up, only that would happen in New York, just on the spur of the moment, we’re all of a sudden eating and sharing stories and realizing that we just had a spark and a passion to do more. And that is, it is such a beautiful thing when people take their hurt and their pain and the real hurt and pain because living with this disorder is, it is not fun. It is not easy when you live every day with the thought of not wanting to be in the world, that is extremely painful. And when you have people that are like, no, no, I want to be a part of this because this is going to help me and my recovery. And then you have family members that are really in the throes of it with their own loved ones, but they have more time to give. They’re like, no, well, I don’t know if I can help my loved one right now, but I want to help other people. Or you have people like myself that have experienced loss but want to give back to help others. It’s truly a beautiful thing. There’s a lot of magic we’ve made together through since that day.
Jackie Colbeth: It’s a beautiful thing. I love it. It seemed very organic start. You’re meeting people, you’re sharing, you’re thinking this would be a really cool thing to try and scale. And I’m wondering if you can talk to us a little bit about how you’ve grown over the years and the different peers that help contribute to the organization.
Paula Tusiani-Eng: Sure. We are going to be seven years old this December, so I know we’re not really a startup anymore, but we still feel like a young organization. The first couple of years we really were finding our way. We were doing some advocacy in Washington trying to get more research for BPD through NIMH, trying to improve policies, trying to get BPD included in legislation. But then we slowly shifted. We really were a metro New York organization before the pandemic with programs that were happening in New York City. We did some rallies in Washington Square Park for suicide prevention. We did an art show in 2017 where we had artists with BPD sharing their work. We also started a Facebook group so that people with BPD can meet each other. So in the beginning we were trying a lot of things and then trying to see what would stick.
We also were creating resources. So right away we started to create print resources for people with BPD because we realized that so much of the material out there about BPD is contained stigmatized information and views. And so we know that the path to recovery begins with good, stigma free information that offers people hope. People often associate suicidality with BPD because it’s one of the symptoms, but no one really talks about the recovery rates. Nobody gives a more positive narrative. And so we felt like it was really important to give people accurate information so that they can take the next step on their recovery. So we have a number of publications and videos and things that we did in those early years to create the foundation for what would come later.
When we did those early focus groups at Emotions Matter, one of the things that was very quickly identified as a priority in our community was peer programs. People wanted peer support. I’ll never forget this, one of the first people I met at Emotions Matter came up to me actually at a book event. And this individual was beside herself and she said, “Oh my God, I’ve never met anyone else with BPD before. I thought I was the only one.” And I looked at her and I said, I’m going to introduce you to someone else with BPD. There’s 18 million Americans with BPD, you are not the only one. And that it’s a very frightening thing when you have this disorder and you’re living with severe symptoms to think you are the only one because you need to get that out of your head. You need to see people that are actually recovering, working at recovery, and people get better and their symptoms remit. And very often with this disorder, that’s not what you see when you Google it.
There’s so many pejorative images of BPD that’s out there in the culture, in the media, et cetera. So we knew that peer support very early on could be a mediating factor to help people on their recovery journey. So we created a committee of peers with lived experience to create our own unique peer support group model. We workshop that between 2016 and 2018, coming up with our own curriculum, asking people with BPD what mattered most in your recovery. And we have four different recovery principles we call them, that we talk about at our peer groups. One is community, find somebody that can help you on the journey. Two is purpose. Find something that you love to do every day to live. Three is trust, believe in yourself and your ability to get better. And four is advocate. Ask for what you need to get better. Speak up for your advocacy needs.
We created these trying to transcend economic and geographic barriers because we know in the real world, people with BPD, if we would say that a recovery principle is go find treatment. Well, unfortunately, 95% of Americans can’t get treatment, right? Because there’s not enough providers, there’s not enough training, clinical training, most insurance companies don’t cover evidence-based treatment for BPD. So there’s a huge disparity between those that can afford and those that can’t afford. So for us to say go get treatment would be somewhat invalidating when people who try to get treatment are on waiting lists and an average from six months to 18 months. But we do try to expose people to other people who’ve gotten treatment so that they have hope on the journey while they’re waiting. They’re learning advocacy skills, they’re educating themselves and we’re giving them resources so that they can advocate to get the treatment that they need.
However, we recognize that the system is somewhat imperfect for people with BPD in terms of accessing that lifesaving care that they need. So our peer support group program officially launched online in 2019. We did an in-person pilot too, but we opted to stick with the online model. And gosh, we started with four facilitators and two groups a month. Now we have up to nine groups a month. We’re still online. We’re helping people around the country. The program will be four years old this April, and we help over 1,000 people a year who come into our support groups. They immediately feel understood, they feel less alone. They’re able to encounter others that are really working on their recovery, and they’re able to share tips and strategies for changing their mindset and moving forward. So that’s really one of our core programs. And we have others that I’m happy to tell you about as well.
I mean, it is something we’re very proud of is that I’m a firm believer that from an empowering framework, if you want to be able to address a social problem, you have to involve people who are personally affected by that problem in developing solutions. And so we do actually have a community at emotions matter of multiple stakeholders, our board, and we have, we’re really a volunteer run organization with roughly 130 volunteers around the country. Some are doctors and clinicians that really believe in our philosophy and our values and our approach. Some are family members that just really love the work we’re doing and they want to really help other people with BPD. But really 80% of our volunteers have lived experience. And then I think that really changes how we are able to change public perceptions because everything that we write, every publication, every video, everything you see on the website, all of our programs, it’s all reviewed and developed by people with BPD.
So we produce things that help people because we get when something is not going to help or it doesn’t sound right, or people with lived experience will say, I don’t think that’s going to work, or I think you should change this image, or this word doesn’t really sit well with me. And we really do believe that part of changing perceptions is empowering people with BPD to be able to speak their truth and express what their recovery needs are. That’s how so many of our publications have come about when people said, “Hey, I’m in college or I’m in school and I don’t know how to explain to my teachers how to help me.” We put together a resource to help people with educational accommodations.
When people said, “I don’t know how to explain what I have to my insurance company because they denied me treatment, but I really need this care.”We put together our single case agreement brochure with a script on what to say when you call your insurance company. So much of what we have produced has been because these are things that have been expressed by the community that they need that need more resources to be able to access care. And so many of our events, like our spring conference, we have a virtual conference that we do from a peer perspective. We have our walk for BPD and in New York City, we have our art show. We have another art show coming up next week in New York City and also online on our website, every empowering event, every event that we do is to help people in the community with BPD to spread awareness, advocacy and education, but it’s also to help empower people in their recovery. So it’s about helping the community, but it also helps our volunteers who are doing this work to help them maintain their recovery goals. And
Jackie Colbeth: In that model, what I love about the model is you’re going straight to the source. I think a lot of times people who are struggling with different mental health issues, they almost get overlooked. It’s almost like, “Well, we’re going to discount to a degree what this person’s feeling because they’re struggling with this.” And I think that that’s a real backwards way to be, frankly. Everything else in life, we go straight to the source when we want to know something. And I think that that’s amazing that you now have over 130 sources across the country that people can turn to and learn from and take seriously. The sense of agency that I see emotions matter, give people is really inspiring because we feel like our agency can be taken away as soon as we begin treatment or start to open up about it.
And what I love is that you’re showing that even when you struggle, you still have a sense of agency. Your opinions are important, you’re important, and there’s going to be amazing things that these people who are diagnosed can do and who better to learn from than the person with the lived experience. So I just think that’s a really unique and great model. Where do you see Emotions Matter as you’ve been evolving and growing over the years? What do you see as the vision for the future?
Paula Tusiani-Eng: That’s such a great question. I think that obviously we would like to see our programs be scalable and to expand. We’re a small nonprofit with limited capacity and funding because people will very often say, “Hey, can we open up a chapter in our city?” Or now that with the pandemic, we grew very fast because people started coming into our groups from all over the country and even the world. But people have a desire to meet each other in their community. So how do we make that happen so that people can have their own community networks around this disorder?
I think so that’s one challenge. It’s a challenge, but it’s also an opportunity because we know that reducing social isolation also helps prevent suicide. It helps people feel connected to a community, and that’s a very important variable in our work. We also know that, you know, talked about us really prioritizing people with lived experience as being our sweet sauce or what makes us special. And you’re absolutely correct, but we do it with intention, like you said, because when people are struggling, we want people to feel a sense of purpose and validation. We want people to feel, we know that people with disorder can have a lot of social anxiety. I mean, this disorder disorder is rooted in an incoherent sense of self and negative thoughts. So when people come to us, their script is usually very negative. “I have BPD, I must be so bad, I have nothing to offer the world.”
And we start from a place of validating the truth that, yeah, BPD does suck. It’s no one wants to have this disorder, no one wants to have a brain that’s wired this way. The system isn’t perfect. We’re so sorry it’s hard for you to get the care you need, but have you met anyone else that’s gotten better? Let me introduce you to someone else. So we slowly try to flip the script from a narrative therapy framework. We try to help people change their narratives. And how do we do that is by getting involved, people start to feel that sense of agency, that sense of self, I am contributing, I’m making meaning out of this disorder and I can get better. So it’s doing all of those things. It’s not to say treatment is important, treatment is essential. We don’t provide treatment at Emotions Matter, but what we can do as a compliment to treatment is we can help people with their social skills get involved in the community.
And at a time when people are sometimes in early phases of recovery, people usually come to us in the late to middle stage of recovery where they’ve already been in some treatment and now they’re looking to connect with other people to use their skills and maintain their recovery goals. So I kind of wanted to build on that theme of the why we do it is because we know that being a part of a community can change someone’s mindset and it’s super important. But to grow, we need to be able to take this model that we’ve created and have more people be able to access it in their community. At the same time though is what’s the vision is that since my sister passed away, the science around B D is incredible. It’s changed so much. We’re very lucky to live in a country where we have five evidence-based treatments for BPD, now, dialectical behavioral therapy, mentalization therapy, transference focus therapy, schema therapy, and good psychiatric management.
These treatments work. The problem is that they’re not available and why are they not available? There’s not enough trained providers. Also, they’re expensive. So what’s going to make a difference? Because ultimately I have a picture of my sister behind me and some of her artwork. So I keep my sister with me all the time in the work I do, but I don’t want other people’s story to be my sister’s story. And that is not going to change. We’re not going to bring the suicide rate down associated with BPD until people can get the treatment they need.
So I think my vision or what I hope to see is more advocacy to change policy because unfortunately, some of the laws around defining serious mental illness, which is where the majority of funding comes federally to the states under this definition called SMI, serious mental illness, it was written in 1993 when there was not a lot in the literature about BPD and the science was very different. But BPD is a serious, it is considered a serious mental illness today. But because some of the federal definition hasn’t been updated to reflect the science funding that goes to states doesn’t necessarily get translated into training professionals and evidence-based treatments or going to programs to support people with BPD specifically. And insurance companies in all 50 states develop their health review panel policies based on federal policy and what the government decides is serious.
So we’ve got a lot of work to do to actually make treatments accessible because it’s really discriminatory. It’s a violation of federal law. When somebody has a serious cancer, they’re not told they can’t get treatment, their insurance company will find a way to get them the treatment they need to survive. People with serious mental illness like BPD, which is one of the only diagnoses in the whole DSM 5, that for which suicidality is a criteria, you should be able to get treatment when you need it. So we’ve got a lot of work to do around advocacy, around educating legislation, legislature, legislators, and government officials that, so that can trickle down into insurance companies and review panels so that people can actually get the care they need.
Jackie Colbeth: What we’d like to ask everybody, Paula, at the end, and this will be a twofold question, what advice would you give in all your knowledge on BPD, what advice would you give to anyone watching our discussion today? What could you impart on to them in what advice could you give them?
Paula Tusiani-Eng: Well, I would say first, if you’re struggling with symptoms of BPD or if you’re a family member and you don’t know if a loved one has BPD trust your instincts. Usually people’s instincts are correct about themselves. If you look at the criteria and you think, “Hey, this could be me.” What makes BPD tricky compared to other disorders is there’s nine criteria. You only need five to get a diagnosis, which means there’s like if you do the math, there’s like 256 different ways you can diagnose, presentations of BPD, but if you read those let lists and you think, “Hey, this could be me, trust your gut.” Because usually people with BPD have been diagnosed with so many other things, and this is a diagnosis of last resort when nothing else fits or medications aren’t working.
But many times people will diagnose themselves before they even get to the doctor. They’ll read about it, they’ll do their research, they’ll come to us, they’ll read stuff on our website, they’ll read stuff and they’ll say, “I think I have this.” And I believe that education is the path to recovery because then you’re able to find providers that can help you. You’re able to interview the providers and say, this is what I think I have. Can you help me? Are you trained in these treatments? And if you can help me, who can you refer me to? So I would say trust yourself. I think with BPD, there’s a lot of mistrust of self because again, your brain is sort of coded sometimes to question yourself, especially if you’re not in the right framework. But most of the time people really are spot on about themselves.
And I think the second piece of advice I would say is do not give up on yourself. Do not give up on yourself. Your life matters. You have so much to contribute beyond this diagnosis or this label. My sister was so many things besides BPD, and one of the things that’s such a privilege in the work that I do at Emotions Matter is that I work with the most amazing people who they have BPD, but they are so many other things in the world. They’re parents, they’re daughters, they’re professionals, they’re writers, they’re artists. They are so many things.
They design our website, they write our materials, they help us with social media, they come up with innovative ideas. So this are more than this disorder. And don’t give up on yourself because just because it feels like sometimes the world is against you because there’s a lot of rejection that goes along with this disorder. When you try to get help, sometimes people are going to turn you away. And that’s part of the process. And we’re here to help people through that process so they feel less alone and more able to get the help they need. So just I would say don’t give up on yourself. You can get better. And finding people to support you on that journey can be really critical. I
Jackie Colbeth: Love that you said that, Paula, because I think it’s really important for anyone struggling to know that their diagnosis, their disorder, it’s a component. It’s not the definition of them. It is one component and sometimes that can get unbelievably magnified and turn into a definition of self. So I think that message is awesome and extremely important. And lastly, what advice would you give to any family member who’s watching this right now and might have a loved one who’s struggling with BPD?
Paula Tusiani-Eng: I would say have compassion because BPD symptoms are severe and they can really affect the family dynamic, can create a lot of family stress. Just remember that. It may seem like it’s the person’s fault, but it’s not really their fault. I mean, they have a disorder where the symptoms, what they’re feeling on the inside is so intense that sometimes think of it like a two year old that’s having a temper tantrum. You’re able to look at the two year old and know that they’re just tired or that that’s their best they can do in that moment to get their needs met. They want more milk, but they don’t know how to say it because they don’t have the language.
Well, sometimes people with BPD, when they are in what we call like emotion mind or they’re having an elevated, their emotions are dysregulated, sometimes the words don’t come out. The words can be angry, they could be explosive, or they can turn on themselves and it can hurt. It really can hurt, and it hurts them way more than it hurts you even if they can’t express it in that moment. So as hard as it is, just if you love them and you want them to get through this and survive, don’t give up on your loved one. Do not give up on your loved one because they need you and just figure out a way to support them in whatever way feels safe for you. People, family members will tell me, “Well, I think they have BPD. Should I tell them?” And I’m like, “Well, what’s the alternative if you don’t tell them?” Having the knowledge and the education is critical to recovery. And there’s sadly, I also, in my work in emotions matter, I work with a lot of families that lose their loved ones.
We have bereavement groups for people that sadly lose their lives to BPD. And the stories are often the same. The parents wish they had done more or they had said more. And so, don’t give up on your child as hard as it is, and don’t be afraid to educate yourself and get support yourself because these are severe symptoms. And you, by getting educated yourself, can sometimes change your behaviors and change your language and then you can inspire your loved one to get help. So again, it’s sort of the same message is trust your instincts and don’t give up because it is a family journey often with this disorder and your family’s important and your loved one is important and you can get through this.
Jackie Colbeth: Paula, I want to thank you so much for coming on and being so candid and sharing so many personal things about your sister yourself and really letting us know more about Emotions Matter.
Paula Tusiani-Eng: Thank you for having me. Thank you for believing in the work we do, and certainly it’s something I’m really proud to share back with our community that Med Circle really believes in our work and that means so much.
Jackie Colbeth: Thank you all for joining today’s conversation with Paula. I can’t help but be reminded that it is still a very sad reality that those who struggle with their mental health lose their lives, and it’s not always by suicide. There’s a larger mental health system. Those who struggle enter into, and like any other systems we have in place, they are subject to failure. The system, as it was designed, does not just fail these patients, but it also fails their families. Paula and her family were able to take the great tragedy they suffered and successfully turn their pain into a huge gain. For those who are diagnosed with BPD upon founding Emotions Matter Inc, just visit emotionsmatterbpd.org and you can see for yourself all the smiling faces and wonderful lives that can be had for anyone who struggles with BPD.
I really hope you enjoyed our conversation. Be sure to tune into next week’s episode for part two of this BPD series to meet Sarah Rosenberg, who is diagnosed with BPD and will share more about her lived experience with that. If you visit medcircle.com, you can access tons of other convos, including weekly workshops with our credentialed doctors, an award-winning video library of almost 1,000 educational videos on a variety of different topics. Become a member of our community today. Visit medcircle.com to learn more. Thank you for listening to It’s All In Your Head, and we’ll chat next week.