Subscribe
Share
Share
Embed
Diagnosed with Complex Trauma and a Dissociative Disorder, Emma and her system share what they learn along the way about complex trauma, dissociation (CPTSD, OSDD, DID, Dissociative Identity Disorder (Multiple Personality), etc.), and mental health. Educational, supportive, inclusive, and inspiring, System Speak documents her healing journey through the best and worst of life in recovery through insights, conversations, and collaborations.
Over:
Speaker 2:Welcome to the System Speak Podcast, a podcast about Dissociative Identity Disorder. If you are new to the podcast, we recommend starting at the beginning episodes and listen in order to hear our story and what we have learned through this endeavor. Current episodes may be more applicable to long time listeners and are likely to contain more advanced topics, emotional or other triggering content, and or reference earlier episodes that provide more context to what we are currently learning and experiencing. As always, please care for yourself during and after listening to the podcast. Thank you.
Speaker 2:If you would like to go ahead and introduce yourselves however you want to do that for just for listeners to orient to the sounds of your voices.
Speaker 3:Sure. Sure. So I am Matt Robinson. I'm a psychologist and the program director of the Trauma Continuum at McLean Hospital.
Speaker 1:And I'm Melissa Kaufman. I am a psychiatrist at McLean Hospital. I actually did my residency within that program, so I've been around there since it's probably been about twenty years. Currently, I wear a number of different hats. I, along with Matt, we direct the trauma continuum program, clinical programs at McLean.
Speaker 1:And I also am the Director of the Dissociative Disorders and Trauma Research Program at McLean, along with, my co director, Yvonne Watt.
Speaker 2:Thank you so much for being here today. I also want to say explicitly for everybody listening as a Deaf person, cochlear implants, listeners already know this, but sometimes new words or unfamiliar words are still hard for me, and I think I have said the name of your program a 100 ways. So when I saw Matt at the annual conference, you were so patient to literally practice it with me so that just so that we know, it is McLean. Is that correct?
Speaker 3:McClain. Yeah. So a lot of people spell it or say McLean or McLeans, but it's McLean.
Speaker 2:McLean. I just wanted that's one of the things I just wanted to clear up and have it accurate now that I understand it. Thank you. How did you all get interested or learn about trauma and dissociation? Let's just start there.
Speaker 1:So I've been interested in trauma and dissociation as far back as I can remember. I had family members who were dealing with know, histories of trauma. Certainly, I myself, who's dealing with those kinds of issues. But in terms of a career choice, I grew up being more of a listener than a talker and have always enjoyed trying to understand people's minds. And so, you know, that in parallel with, you know, kind of trying to understand the family circumstances and dynamics led me to be interested in trauma and dissociation.
Speaker 1:And I ended up studying trauma in graduate school. I worked at the National Center for PTSD and did my doctoral work looking at kind of neural correlates of dissociation in Vietnam War combat veterans with PTSD. And then I went on to do, my medical residency, in psychiatry at, McLean or MGH McLean, And they had, you know, still have a number of units dedicated to, folks with trauma related disorders. And, some of my mentors, Jim Chu, Sherry Wintraments, had been working with folks with DID for a long time. And so I landed very well and have ended up sort of carrying their work forward.
Speaker 1:I
Speaker 3:first encountered sort of trauma and dissociation when I started my master's program. I didn't always know I wanted to be a clinician, I sort of found my way there, and I was faced with my first clinical placement. It was at a Native American college, and my first client, the first person I worked with reported trauma and really opened my eyes, and and I was sort of dreading the clinical part of the training. I thought I wanted to be a researcher, and I really found, a, that I liked working with people in that way, and that it was something I could be potentially successful at. So that's what led me to go on to a PhD, And because of that early experience, I knew I wanted to focus on trauma.
Speaker 3:I did my training at the VA hospital in Manhattan, and then in Boston, and then got my first job out of postdoc with Doctor. Kaufman. I'm very lucky for that. And prior to joining McLean, I had less experience with dissociation, but have really tried over the last decade to really understand it and invent a lot of training and exposure to dissociative disorders from doctor Kaufman and Lauren LeBlot and others.
Speaker 2:Thank you for sharing. How did you each get from those studies into what you're doing at McLean and what can you say about what you're doing at McLean?
Speaker 1:Well, that's a great question. I think my interest in trauma and dissociation really fueled my, my compassion and commitment, to go to school to to study these things in particular. And so quite frankly, I always wanted to end up at McLean. I knew about their units and so that was a very long term goal of mine and I just got incredibly lucky to be able to do what I wanted to do career wise. I started off by working on the inpatient unit.
Speaker 1:So it's a dissociative disorders, still is a a program. And at time, the it was devoted particularly to women with DID and and complex PTSD. So I did some training there. And then I was asked to direct the partial and residential program there dedicated to the same. At that time it was a women's program for folks with DID and complex PTSD.
Speaker 1:And through the years it's kind of more because we now treat folks of all genders very inclusive. We continue to treat folks with, you know, PTSD, complex PTSD, and DID. Matt came on board and, really helped us to develop the outpatient trauma clinic, so we now have an outpatient clinic devoted to those, treat those kinds of issues. Along with that, I really was very interested to try to understand the link between the types of issues that folks with DID talk about clinically and trying to understand it from a brain perspective. And I mean, I am very interested in in the brain and and neurology, but mostly, I wanted to do a neuroanatomycin study in DID, to try to help you if we were able to do that and publish on DID in that way, I really hope, continue to hope that it will help people to get access to treatment and for insurance companies to pay for it more readily.
Speaker 1:So in 2013, I started our dissociative disorders and trauma research program, hired a wonderful colleague, as we've already mentioned, Lauren Lebois, who really has built up the lab. She's received funding from the National Institute of Mental Health to conduct these studies looking at correlates of dissociation, in the brain which has been a lot of fun and very interesting. Best part about it is working with our research participants who are so happy to give up their time. They're so motivated to help find answers because they want other people to really benefit. So it's a long winded answer, but I kind of knew what I wanted to do and I've just been very lucky.
Speaker 1:Took a long time to sort of secure this route, but I kind of always knew what wanted I to do.
Speaker 2:I I know, Matt, you shared some of, like, how you landed there. How how would you all explain, whether it's to people with DID or or whether it's clinicians learning about it, how would you explain how and why what you all are doing, what Lauren is doing is so, so important and different than before? What how would you put that into words, like for the lay person or a clinician just learning about it?
Speaker 3:Different from before, meaning
Speaker 2:Different from, like quiet's so important that we're learning this about the brain. Things like being able to distinguish it, not just defend the diagnosis, I feel like that's an oversimplification, how would you express that?
Speaker 3:Yeah, well, so I'll say from the reason I'm here and from the very start of being here, for any of you who are lucky enough to get to know Melissa and the rest of our team, we are they are, and I am part of it now, very mission driven, and and all of us care deeply about people who've been affected by childhood abuse, and it's palpable. And so everything we've done to build up our program has focused on increasing access and care for people with histories of childhood abuse, especially DID. And I think, you know, Melissa and Lauren are very focused, and one big part of their job is the research, and I think that's important in a lot of ways. But we're also trying to do advocacy and deconstructing stigma focused work because of the historical misconceptions among laypeople and clinicians about what DID is and whether it's real or not, etcetera. I think it's important now, as it has always been, but I think we have a moment now where it's we're we're talking about mental health and trauma in new ways, and I think there's an opening for us to really do some good work in making sure that DID and childhood abuse related problems are front and center, that clinicians are being trained appropriately, ultimately because we want to both provide good care, but also draw attention to why people develop trauma, trauma disorders of DID, which is childbirth abuse, and that often gets overlooked and goes unnoticed.
Speaker 3:So I don't know if that answers your question entirely, but
Speaker 2:I guess this goes back to doctor Kaufman, but I am curious also how these more recent developments and Lauren's studies and what you all are doing is unique from I'm trying to think, like, when I look at original research or back in the day or some of the pioneers in the field, we have these theories, we have common characteristics for people with dissociative disorders, we have things like that. But what's happening now is we are seeing the brain. We have Simone's research, Lauren's research, what you all are doing. What makes that so significant for people who are literally not getting why it's such a big deal?
Speaker 1:Understanding the neural correlates of DID. It's funny. I don't I don't need an MRI to prove that DID exists. I know that DID exists, and folks that, have a good fortune to work with people who have DID knows it exists. If you have DID, you know it exists.
Speaker 1:But there are a lot of people still who don't understand it. And for the medical field, if you will, it does help to have neurologic findings that correlate. It and then there's also some interesting questions. Where, you know, where does it come from in your brain? Everything, you know, everything is brain based.
Speaker 1:I mean, you can think about things that are spiritual. I'm not really talking about that, but everything that goes on in the body and the mind, there is a brain basis for it, and I'm very curious to understand more deeply what brain structures are involved with dissociation. I think that that's really interesting, and we're beginning to really sort that out. And again, do I need an MRI to prove to me or you know that DID exists? That's not what we're trying to do.
Speaker 1:We're trying to really hone in on the actual neural correlates to understand the phenomenology better. When you have depersonalization or derealization or, this not me sense, where's that located in the brain? It's Number one, it's an interesting question and we're starting you're right, Simone Render is doing some excellent studies as well and we're starting to really hone in on that. And how is it different than PTSD? How is it different?
Speaker 1:And it most certainly is than psychosis. We're doing studies to look at, the differences between psychosis and severe dissociation because a lot of people in the medical field don't understand that. And so to do these types of things hopefully is to eventually, you know, help to avoid these misconceptions and misdiagnoses and to be misdiagnosed with psychosis, a psychotic disorder when you have DID and put on, you know, antipsychotics, that's not good. That's really, really concerning. Antipsychotics can have significant side effects.
Speaker 1:So I think ultimately we want to be able to educate people with what we're doing, show that there's neural correlates that are different than other disorders to really be able to hone in on what the person really needs in terms of treatment. As you, I'm sure, I'm sure Emma, well aware, and I'm sure your audience is well aware again of how DID gets misdiagnosed even still. So that's part of it as well.
Speaker 2:I think it's so, so important. And I experienced so many things while you're talking. I want to hear your work and all the things, but that relational component is so critical. And I think maybe clinicians can hear this and understand, Oh, a misdiagnosis obviously is a problem. But those of us who have lived experience hearing a misdiagnosis and the implications of that and the experience of that, and like you're saying, like with antipsychotics or medications that are not appropriate, because it's not actually what is like addressing what the actual problem is.
Speaker 2:And that's so powerful of going back to what Matt said even about addressing stigma, that this is not the same thing. I worked for years in the ER setting, and if someone came in and said anything about dissociation, that's what they got. They booty dart them and send them on for the weekend somewhere else. And not listening, not tending, not even trying to work with who was presenting or how they were presenting. And it's such an issue that has such an impact in so many very pragmatic ways, but also then becomes literal misattunement in the treatment setting, which then itself becomes re traumatizing.
Speaker 1:Absolutely. You know, let alone years and years and years of misdiagnosis and trying to get the help that you need and being misdiagnosed with schizophrenia or my personality disorder or bipolar disorder. And you're right, mean, all the medications and all the wrong treatments, that's horrible. And these are real people who are living through this sort of thing. I mean, what if, you know, people were you know, what if it was a a different kind of of medical issue?
Speaker 1:It was, you know, that appendicitis was getting misdiagnosed for five, ten, fifteen years and so they take out your spleen and your you know, it's almost the same thing, but I think you're right. Possibly, I was gonna say, just or even more important is what it is doing in the person to person relationship. If you're someone with DID, even, you know, someone who is, you know, trying their best and really wants to help, they can't really hear you if they don't know what it is they're treating or don't understand it. So that is a traumatic experience for people to be that invalidated over and over and over again, let alone the types of getting incorrect treatments or medications or being put on an inpatient unit where, you know, there's all sorts of folks that, you know, are having issues that are not related to what you're having. So it's kind of a vicious cycle.
Speaker 1:And, I'm, you know, as Bob was saying, we really are motivated to help educate people and, you know, do the best we can for the folks that come to us and trust us to understand.
Speaker 2:I was leading a group of clinicians in a discussion last night in a group, and one of the things that came up was how we talk about intergenerational intergenerational trauma, but we don't always talk enough about intergenerational healing. And when we're addressing things like stigma, or appropriate treatment, or offering care to people the way they actually need it, and tending to the wounds they actually have, it can be so, so powerful and exponential. I even just had this moment in this interview just now, where I actually became quite emotional, because I did not know that I needed to hear someone, anyone, say, You don't need the MRI to prove you have DID. That's a simple, simple thing. I didn't even know it was in me bothering me, but I know when the fMRI studies first started coming out, or the MRI studies started coming out, it was both intriguing and exciting for all the implications that were unfolding.
Speaker 2:And also, I felt very excluded because I do have cochlear implants, which means I cannot have an MRI. And so it's just this like, no one's harming me, no one's maliciously excluding me. And, also, it was just simply by circumstances othering somehow or in a way I didn't notice. But then when you said that, not even directly to me, I felt, like in my body, I felt attending to and a release that I didn't even know was in the way.
Speaker 1:Mhmm. Yeah. Yeah. Well, thank you for for sharing that, I think I understand that. There is I I you know, I understand very you know, at a practical level, you not being able to participate and how that would feel.
Speaker 1:I think that's how a lot of folks with D. I mean there's a whole let me just take a couple steps back. People with DID routinely are not allowed to or happen in say PTSD studies it's too complex or most kind of studies that people with DID, you know, often are on medications, but folks with DID sometimes have, you know, co occurring issues that, you know, they're not they're not represented in research very much. And so and they're particularly not represented in more neurobiological research because nothing has to be controlled and so that's an issue. Every, you know, all the folks that have been kind enough to give their time wanted to be in these studies because they care about DID, they care mostly about other people with DID and trying to help in that way.
Speaker 1:And so the feeling of being excluded, I understand, for you in particular, I think it resonates even more so, right, because you can't, participate in an MRI study, but you can because we're doing these studies, there are other studies now and DID is, there's more interest and excitement in the field. And so there's more, there are more studies on DID and the National Institute of Mental Health is funding studies on dissociation. So more people with DID should be allowed to participate in research. That's really important. I hope that helps.
Speaker 2:I think that that's really significant. It's something we've talked about on the podcast from time to time, but it's a good reminder that so often some of those studies or some of treatment models that are self identified as trauma informed or something have excluded people with trauma. And that leads to more bad care, or things that are so left brain, the right brain is intended to, and then there's more retraumatizing. Like all these kinds of things we've talked about on the podcast, but this is a good point of how good research and quality care that's accurate and specific to folks with dissociative disorders leads to options and more research options. And so that also becomes exponential in nature.
Speaker 1:One thing I wanna acknowledge though, Emma, is what you said about how it felt when I said, I don't need an MRI to prove to me that DID exists. So as a researcher who is doing neuroimaging, sometimes I struggle with that because A) why do I have to prove to anybody that DID exists and why is a brain scan more able to speak to people than just people telling them about their symptoms? And all the wonderful research that has gone on for the past one hundred and some odd years documenting DID. Of course it's real and why it why don't people understand why of all the different psychiatric conditions, why is DID so stigmatized? Why do we even why do we have to prove somehow that it exists?
Speaker 1:And that that actually bothers me. And so I I understand what you're saying, that feeling. Guess, of relief when I say that, but it's a struggle that I have too. Why do I have you know, why do we have to do this? Yes it's intriguing from you know a research perspective and scientific perspective and I am interested in the brain and who knows what sorts of discoveries can be made but when it comes right down to it I don't wanna have to prove to someone that DID is real.
Speaker 1:I know it's real. And why is that why is it still so challenging?
Speaker 3:This reminded me, Melissa, of something we often talk about, which which is how important it is for us to both do our work in a way that is seen as successful in the traditional sense, while also working to kind of deconstruct that, knowing that it shouldn't be that way. So that tension is something Melissa and I and Lauren and others are always talking about. How do we both play the game that needs to be played to try to do as much good as possible while still focusing on realizing that the the game should change. That shouldn't be the way that it is to begin with.
Speaker 2:I think that's always a question for any kind of social justice. Right? You want to change things systemically, and you see change needs to happen systemically. And also, you're within the system you're trying to change.
Speaker 1:Yeah. Exactly. I mean, mine is too, I guess, little bit. It's it's a whole other really important topic, but because of this struggle that I've had, which I I actually don't I don't talk much about sort of outside our our, you know, circle. But, because of that and just because it's important, we, put together this lived experience advisory group to advise us.
Speaker 1:We started, I don't know it was 02/1516. And I really wanted a group of folks with DID to be telling us, is this research that matters to you? Is this research that changes the way you feel about yourself? What type of research do you think could best help you and others? And they have all sorts of important and there were a number of different reasons why but some folks said that it helped them to understand that there is a biological basis.
Speaker 1:It just helped them to not blame themselves, and that's so sad to hear, but sometimes people with DID worry that there's something wrong with them per se or sometimes they you know it's often part and parcel with DID to sort of doubt yourself and so there were a number of people that said that this was somehow it made them feel comforted to know that there is a biological basis and we're showing what that is. And that was, that helped me. That helped me a great deal actually.
Speaker 2:I think that's really powerful. Something about understanding how the brain works that also like, this is more than cognitive. It also opens up space for compassion of this is what is happening neurologically in response to what happened to me, which is a very different thing than this is what's wrong with me, this is why I'm broken, I can't get my life together, relationships are hard, I'm scared of things, I'm crazy. Whatever all those stigma things that we then do to ourselves. But when we understand what the brain is doing, there is more space for compassion from everything, from understanding myself to also understanding why some treatment does not work and why other therapies are more specific to what I need and those work better.
Speaker 1:Exactly. You said it so much better than I did. Thank you. That's exactly what what I'm trying to convey. And speaking of treatment, we're we're very interested in working with Bethany Bryant and Ruth Lanius to do a neuroimaging study.
Speaker 1:And what we would do would be to do the MRIs before Bethany and Ruth's finding solid ground treatment and after it to look at the neural correlates of dissociation, how they make change in response to this kind of treatment. So that's exciting and that's a real practical aspect and I feel very excited about this for sure. It's very important as you both know and as your audience I'm sure knows to receive the right kind of treatment for DID. And it's different than some of the standard treatments that people get for PTSD. So being able to show that from a biological perspective, I
Speaker 3:do think would be powerful.
Speaker 2:I think when you have right, accurate, appropriate treatment and have that space for compassion, for understanding what's going on, that is the kind of relational attunement, even just in treatment, that can bring me back up to my frontal cortex so I can do all the other things. But if everything in therapy is stigma or misattunement or more relational trauma or re traumatizing, I can't even get up into the part of my brain that I need to be able to do some of that therapy.
Speaker 1:Very well, sorry. I hear you.
Speaker 2:Mac, did you have something you wanted to add even if it changes the direction? That's okay.
Speaker 3:Well, I'm a I'm a therapist clinician at heart, and so when you were mentioning intergenerational aspect of things, I was also thinking about the ripple effects of what happens when someone with DID doesn't get appropriate treatment and how that affects their family and so many other aspects of life and perpetuates, you know, problems and stigma year after year after year, and that by just being better at helping people and that that will have a wider effect than just with the individual who has the idiots, their partners, spouses, kids, you know, that also benefit and are healthier for it.
Speaker 1:That's a great point.
Speaker 2:That's just hanging in the air for me just because of where I am personally. I spent the last year working through religious trauma and getting out of that and conversion therapy and all the things to just be myself and include all of me. And I love what you're saying because I could not I got to a point in therapy where I could not progress in therapy if I could not include all of myself. And if I was still in a place where I was being traumatized in ways I wasn't aware because of systemic stuff, I could not tend to those things, or I could not include those pieces of me. And recognizing the impact of these layers is really huge and impacts everything.
Speaker 1:Yeah. Yeah. Absolutely. Absolutely. Once again, you say it so well, Emma, and I I appreciate you giving examples from your own life because it really does it it it packs a real punch about what you're saying.
Speaker 1:Emma, thank you.
Speaker 2:Oh, I appreciate I appreciate that there are people out there doing the things that make that possible because I guess maybe like the intergenerational piece where there's also intergenerational healing. I think this is a piece too where, yes, there are systemic problems and also there are systemic solutions that are happening, like people in the trenches trying, people doing things that change the future and change the world in ways we can't even see yet. Like Doctor. Kaufman, I know you're on the scientific committee with ISSTD and you're with the, I've worked with you, extended through the treatment guidelines revisions, and we've literally been on this round of revisions, like for years, right? Like it's been a couple years, and it just takes time.
Speaker 2:And it's one thing for me to be like, Oh, if we could just fix this piece or fix this piece, or if we can make it say this, or if we can change that, that's fine. But pragmatically, it takes all of this work and all of this time and all of these people and the coordination of all of it. And it's a really epic process, and it can get overwhelming or feeling like that delay in care, like from deprivation or neglect, when you don't understand those pieces, that it is actively in process. Research is actively happening. Change is coming.
Speaker 1:Yeah. Absolutely. We can we can write in. I just
Speaker 3:said we can't do enough fast enough, and we feel we feel kind of a sense of urgency, and we are big thinkers and want to make big changes. And as you're saying, Emma, pragmatics of doing that, we're kind of always in contention with those even even as we feel feel a sense of a real pull to do more, do better, help more. Absolutely right, Matt. We always want
Speaker 1:to do more. We always want to do the best we can for the folks that are trusting us, you know, to care for them or to do research that is helpful and practical. Having said that, I I myself feel like I'm standing on the shoulders of folks that went before me. There's been amazing research that has really propelled the field forward from a very different place than it was when it all kind of started. I'm gonna say it all kind of started in the seventies.
Speaker 1:There's been interest and very important case studies throughout the years, for the past hundred and twenty years, probably longer. But the real kind of modern study of dissociation DID got its start in the, I would say the 70s, late 70s, early 80s. And there's been some amazing work that has been done to get us to the point where we're now revising third, revising the addition of the treatment guidelines for the third time. And yes, there's changes and there's been new findings that will make this latest addition edition very, very helpful. But I do wanna give credit for the people that that started doing this, you know, well before I knew what I was doing.
Speaker 1:And so I think that's important as well. We have so far to to go, but, you know, Marlene Steinberg is actually we're we're having a conference the week after next, and Marlene Steinberg is going to be speaking on the SCID D. She got the first and in 1989, the first National Institute of Health Research funding to develop the SCID D. And the SCID D has been more numental in helping to correctly diagnose folks with DID. So, you know, lots has been done and it's a real honor to be able to speak to Marlene and get her advice on our research as we move forward.
Speaker 1:We use the SCIDD both clinically and in our research. And that's just one example of folks that have, you know, come before and really blazed the trail.
Speaker 2:It's very exciting that that's been updated for the DSM-five and that that's been out and presented, and I'm so excited about it. I also want to even give what you're saying a broader context from an indigenous perspective, it's actually super, super important that we honor the wisdom of our elders, and that can be tricky for me to say because of things like religious trauma or childhood stuff, right? But we're talking about accurate, good care, and the wisdom of meaning the right medicine being applied. And so when we talk about original research, or pioneers in the field, or things like that, Yes, we have learned a lot since then, but all of it is built on that in many good, good ways. And one of the things we talk about on the podcast a lot or frequently is being educated consumers when we're reading things or buying books about dissociation or social media or, like, podcasts.
Speaker 2:Right? I can use myself as an example. But this is why it's so important that what you're reading has citations and what you're reading is accurate or what you're hearing or what is being presented to you has those citations. It's not because of some oppressive aspect of systemic stuff. It's that wisdom credit, we call it, or being able to track.
Speaker 2:Like, it's not just important in research culture, but also just as part of humanity. We know this because this, and because of this, and because of this, and it what ties it's what ties together, not just culture, but history, and now, and the evidence of all of it.
Speaker 1:And so I guess, so well said, Emma. It's a written history of where we've been in terms of understanding DID, and it goes back a long, long time. And there have been many people that have devoted their whole careers to understanding how to better serve the patients that they were treating under terrible duress. I mean, the types of vehemence that folks like Rick Klutch, Rich Lowenstein, Bethany Brown, I could go on and on what they faced and that they continued in the field because it was important to them and because what they knew was built on this very important written wisdom. So, I definitely hear what you're saying.
Speaker 1:There are oral traditions, you know, traditions of of perpetuating, the wisdom, and there's written traditions. And a lot of it is not dry academic stuff. It's very what would the word be? Sometimes when I read what these amazing clinicians who dedicated their lives to their patients have written, it's, it really goes to my heart.
Speaker 3:It's very huge, very
Speaker 1:huge. Thank you. It's very real, it's very human. It's not dry and scientific, and it it's and there's there's part of that, but it's very real. And it really does me good to read what these folks have done and how devoted they have been to understanding and treating DID.
Speaker 2:I think just trying to give context, this doesn't speak to it at all. And I don't mean to appropriate that, but just helping listeners wrap their minds around what some of these leaders in the field have been through. People who are regular listeners to the podcast know even just what I have been through, which is nothing like what these people have been through. But my office has been protested. My information, like I got doxxed.
Speaker 2:My information is out on websites for whoever. My children, people have shown up at the school to try to talk to my children. People have hot lined our family without good cause or any reason. All of that has been dismissed, but having to deal with these kinds of things, people have contacted my universities to see if I actually had degrees. People, contacted licensing boards.
Speaker 2:People mailed threats in the mail or unpleasant things in the mail that I don't even wanna talk about or legally can't discuss. Like, it is a safety issue. It is personal and family threats. It is professional threats. And the degree of what these clinicians went through, especially back in the day, is more than what we could even have time to discuss right now.
Speaker 2:But just trying to personalize it and encapsulate it in a, like Matt said, in the humanity of it, that when I say things on the podcast, there's sometimes things people don't like or people misunderstand. Or when I started talking about religious trauma or being queer, a lot of people stopped donating support for the books that I give away, or things like that. But I have to be me, and I have to say the things. The pioneers in the field and what they went through just to continue research, just to offer good, compassionate care. There are not words for what these people went through, and I just wanna be really explicit about that.
Speaker 1:Yeah. Thank you again, and I'm heartbroken to hear, I knew a little bit. I didn't know the extent of it. I'm so sorry for what you and your family have been through. Gosh.
Speaker 1:And and you're right. Mean, I don't know that we can compare, and and what you've been through has been really terrible, but you're absolutely right about other folks, you know, having to deal for many years. And, you know, there there were careers ruined, and people had to continue to do their their work, under the threat of all sorts of types of things and I think giving credit where credit is due is very important. And you know, we talk about how, you know, I don't DID is real. No one has to convince me of that.
Speaker 1:These are real people. These are our patients. They're our participants. They're our colleagues, etcetera. But you know who else is real?
Speaker 1:It's, you know, the clinicians and scientists who have been in the field. They're real people who had to make really tough decisions to do what they did or to continue to do what they're doing now, and I think that's really important. Sometimes I hear, you know, I hear things like, oh, these people write their books and they publish their research, but they're in ivory towers and, you know, all sorts of things that I've heard about sort of levied at people that I really respect. And I just wanna say these are real people who actually, you know, devoted their lives to doing this, and they're not in ivory towers. A lot of their research, I know, they self funded.
Speaker 1:I mean, it's just, I wanna kind of open people's minds to that.
Speaker 2:I'm sorry. It's just emotional. So I'm just feeling what you're saying. Yeah. I think it's one of the things, again, I don't mean to get too off topic, but it's one of the things I like about ISSTD is the humanity of people.
Speaker 2:People are approachable, people can connect. The at the annual conference, Matt, you sat down to talk with me and Jules just for a minute to touch base before we did a panel together because we hadn't got to meet in person. And it's just
Speaker 3:that's That was for me. Highlight of my my weekend.
Speaker 2:Oh, it really is just so tender because we just get to be humans together, and it's not at all ivory tower ish. It's really like, we're here. We're doing this conference. We're gonna learn together. We're gonna work hard together.
Speaker 2:We're gonna present together. We're gonna play together. Like,
Speaker 1:these
Speaker 2:layers of just being human, and also being able to be professional or colleagues. You know, one thing that happens to me a lot as a deaf person is they will say, and I know it happens in other communities too, it happens in queer community, any kind of little community, right? They'll be like, Oh, well, so and so is deaf, so you guys must be good friends. I'm like, I don't know this person. I'm not their friend just because we're both deaf.
Speaker 2:Right? So, yeah, there are personality differences, and not everyone is like BFFs, and also that's okay. We don't have to be hateful and cruel. We can be professional. We can work together.
Speaker 2:And also, so many of us want our people, like the people we're helping, participants, clients, whoever, we want our people to feel safe. We want to be safe helping them. And so the majority of us, at least in my experience, work really hard to help those around us also feel safe, even when we're still learning.
Speaker 1:Absolutely. And to have a space where colleagues and people who are dedicated to the same thing, That's what it's all about in many ways is that feeling of shared interest and shared caring and just like you were saying to be able to be yourself, right? And to talk about your research and that people will get it, or to talk about what's going on with your clients and how people really understand. Helps you
Speaker 3:to keep doing what you're doing. I like the importance of being able to dis I think I'm thinking about being able to disagree respectfully, have good debate that actually helps everyone, and I just I see the way things are going in the world and how divisive things are, and I want for our field to make space for everyone because there's plenty of work to go around, and to be able to have really difficult conversations when they come up, and still feel safe and respected and respectful of others.
Speaker 2:I talked about it in my plenary at the annual conferences, brave spaces, and using that concept and that model of we all have our challenges and differences, and we all have things to learn because we are human. And also we're here because we care and we're speaking because we're trying and we're learning together and supporting each other and all of these things, but that requires us to have brave spaces together.
Speaker 1:I love those words together, Emma, brave spaces. It's a wonderful visual and it's wonderful when you have it, you feel it. Right? You know when it's there.
Speaker 2:What oh, sorry. Go ahead, Matt.
Speaker 3:I was just saying, yeah. Agree. My nonverbal affirmation or my verbal affirmation of my nonverbal affirmation.
Speaker 2:Is there I I wanna respect your time. Is there anything else you want to add specifically for lived experience, people listening, and is there anything else you would want to add for clinicians who are listening?
Speaker 1:Speaking with
Speaker 3:my sort of program director, I'm someone who cares, or I'm not the scientist that Melissa is. I'm much more of a systems, like, let's figure out what's wrong here and try to address it kind of person. And I guess for clinicians out there, I'm assuming most of your audience have has some understanding of what we're talking about, but I feel very interested in working with and educating clinicians and professionals because I think we can have the greatest impact most quickly. So I guess I would say the trauma continuum of a plane wants to be a leader, but also wants to partner and collaborate and hear good ideas and support good ideas and work together on good ideas to destigmatize and increase access for for DID, for treatment of DID. The partnerships with individuals who have lived experience are very important.
Speaker 1:Absolutely. And it's been important the whole way through. There's wisdom there that but, actually, you know, if you can't read about it, maybe it's not in the you know, well, it's probably not in the textbooks or, in the publications. It's coming from people who have been there or who are still there, and, that perspective, cannot be can't be overstated how important that is. Yeah.
Speaker 3:And I guess in closing, just very grateful for you giving us the opportunity to talk with you. Obviously, I've listened to your podcast, and we talked to ISSTD, and it's it's taken negative two months, but we got here.
Speaker 1:Thank you, Emma. It's really it's a feels like a privilege to be here, and I I look forward to continue to collaborations with you in those brave shared spaces.
Speaker 2:I am so grateful that we got to talk together today and I thank you for your time truly. Thank you for being here. Thank you so much for listening to us and for all of your support for the podcast, our books, and them being donated to survivors and the community. It means so much to us as we try to create something that's never been done before, not like this. Connection brings healing.
Speaker 2:One of the ways we practice this is in community together. The link for the community is in the show notes. We look forward to seeing you there while we practice caring for ourselves, caring for our family, and participating with those who also care for community. And remember, I'm just a human, not a therapist for the community, and not there for dating, and not there to be shiny happy. Less shiny, actually.
Speaker 2:I'm there to heal too, being human together. So, yeah, sometimes we'll see you there.