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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 longtime 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 1:I have another class to tell you about, except this was not a class. We went to the ISSTD virtual conference on the impact of societal trauma on marginalized communities. And you guys, it was amazing. There were women speakers, there were black speakers, there were Asian speakers, there were Latina speakers, there were queer speakers. We talked about trans issues, we talked about gay issues, we talked about racism issues, we talked about poverty, we talked about politics, we talked about the protest, we talked about so many things.
Speaker 1:You guys, it was a powerful conference. It was so, so good. The first session that I attended was presented by Ellen k Jepsen, who is a PhD from Norway, and she was amazing. She blew me away right from the beginning. So you know in the other classes, we were just learning about window of tolerance and containment and about safety and how important those things are?
Speaker 1:She blew me away with this research about how people with dissociative disorders struggle with those issues, with triggers and regulation and containment and all of these things that are so hard because that never developed in them, was never modeled with them, was not Because of misattunement, shame, all these pieces we know, right? But she said it's not just negative feelings. She said we don't know how to tolerate positive feelings either. I know, right? It was a truth bomb mic drop that I went, wait, what?
Speaker 1:Like, I heard the record player screech the vinyl. Like, what just happened? What did she just say? She gave a whole presentation about how we cannot tolerate the positive feelings either. This explained to me also what happened for me the entire last year and why making friends and healthy positive with good boundaries connections has been so freaking traumatic.
Speaker 1:It helped me understand why my own progress in healing and my improved relationships and the consistency of my good friends and the safety that we have built in our little world on a hill where we live now, why that feels so terrible when everything is okay. You guys, she explained it. And once again, we're not as crazy as we thought, and it actually makes sense. And I don't understand why I never understood this before. Because once you see it and once you understand it, it's like, oh, that makes perfect sense actually.
Speaker 1:And maybe I just wasn't ready to hear it because I'm sure someone has said it, maybe even on the podcast. She quoted Kathy Steele, who I even saw present in person, and then who has been so kind to come on the podcast and talk things out with me, I totally respect her for that and I'm grateful. And so I'm sure Kathy Steele's even said it when I was right there with her in person. But she said that Kathy Steele said in Amsterdam in 2016 that you have to work on tolerating the positive feelings before you can work on tolerating the negative feelings. Okay.
Speaker 1:So this goes back to what I shared last week in the last podcast about what I learned in those other classes. Right? This is more of the same stuff, you guys. It's so true. And now I'm understanding it.
Speaker 1:Let me say again, Kathy Steele said in Amsterdam in 2016, quoted by Ellen Jempson in Norway at the societal trauma virtual conference in ISSTD, Kathy Steele said, you have to work on tolerating the positive feelings before you can tolerate negative feelings. Blew me away. It changes everything. It explains so many things why such good moments can so quickly feel so dangerous even though nothing is wrong. I have carried so much shame about this and been so hard on myself about this and felt so ungrateful and so ridiculous for thinking these pieces were hard when people that I knew were just good and kind people were trying so hard to be supportive, that it was really, really difficult to wrestle with this piece when I didn't understand what I was wrestling with.
Speaker 1:And I think it's actually one of the good things that's come out of quarantine because we have been in quarantine where our physical environment stays very consistent and safe. And so the friendships we have developed, we have developed very slowly and from a distance. It has helped us contain things within the window of tolerance, but what I now understand from this is that we also have to contain and learn to tolerate the good feelings, and that's why that goes slowly too. That's why it feels too much very quickly. So let me give a neutral example that is not about trauma.
Speaker 1:So it's not scary to listen to the story, but it was a really hard thing to live through. We have like a good close friend for the first time now, right? And we've talked about her before on the podcast, the one, she also had a sick child. And so we had lots to bond through that was safe and sort of dissociated from me directly enough that we could build some safety there before we very slowly became friends on our own account away from just parenting our sick children. Right?
Speaker 1:So that part of the process makes sense. I understood that piece. I've done the work on that piece, and that's been great. Like, friendship is really about us, not just our sick children, but having that context to build it is what made it possible. But we were friends with her for almost a year before the birthday.
Speaker 1:Through her, we also met another friend who was a good safe person, but we only had a few encounters with. So that felt safe because it was very, very slow and very, very gentle. But she also came with our friend to the birthday party. And then part of what was hard about 2020, part of what was hard this year with the pandemic as far as the quarantine experience was that as soon as the birthday happened, the pandemic also happened. And during that time, we were also in crisis because of our daughter who was so sick at the time.
Speaker 1:And so our need for safety and our need for connection went up. At the same time, we were learning to first have connection. And then because of the pandemic, our access to connection went down. So you can see how that became actually a huge crisis. And without this framework, we didn't know how to navigate it.
Speaker 1:But over time, it's been eight months since then, and over time, our friend that we already were close with stayed the same. And so that offered safety and we were able to tolerate that, although it was scary at times because of the good feelings piece, which now I understand. Today I get that and I have to tell her about that and share that with her. But the other friend that was new, we went very, very slowly, but she was also responsive and she was also consistent, both of which are actually really important to me because of our trauma pieces and the way that our brain works and being able to literally, physically, neurologically even be able to hold on to that in our world. Like, we just that's a capacity issue.
Speaker 1:That's not a drama issue. That's not a friendship demand kind of issue. That is a capacity issue. I do not at this time yet have capacity to hold on to a new relationship if it is not consistent and present and responsive so that I can have those touchstones to hold on to it. It literally slips through my fingers like sand if I don't have that.
Speaker 1:So that's a capacity issue on our part. But because she was able to do that very gently, very slowly, and I even shared the podcast, so there was a way to share some pieces of us with her in a way that was safe. And she she was gentle and careful and safe and consistent and responsive and all these things. So now eight months later, she is also a good friend. So we ended up coming out of quarantine with two friends instead of only one, like we went into quarantine, which for us is actually a really big deal.
Speaker 1:And I think that the quarantine, even though it actually made things hard in lots of ways, I think it kind of functioned. We ended up using it. We ended up using the quarantine to function as a container, to help with containment, tolerating the good feelings of developing a new friend. Do you see? So now I see how even sometimes natural things like the pandemic, instead of only focusing on what is wrong with it and how isolated we were, we can also use it for good because it helped pace the development of that new friendship so that we came out with two friends, which is a big deal.
Speaker 1:The two that I was able to develop relationships with safely, that window of tolerance opened further so I can handle more my capacity increases, and I learned how to do that differently. So this was powerful. So Ellen Jepsen talked about a meta analysis study that included a two year follow-up and how they realized from this study that people with DID actually cannot do grounding and containment successfully. And they were actually not feeling better, even though they had had some treatment. You guys, what does that feel like to hear a clinician, a researcher to say that out loud, that you aren't able to do what they're trying to ask you to do?
Speaker 1:You're physically, neurologically not capable of doing what they're demanding you do and saying, If you do this, you'll feel better, except we cannot and so we don't feel better. It was so liberating and so empowering. And again, a moment where it took this shame off because any survivor could have told you that. But they say, no, no, no, no. This is how it works.
Speaker 1:You need to do this and you need to do this. And she is saying they realized it's not working like they thought and something needs to change. It was a moment that I wish every person with DID or OSDD or a dissociative disorder at all, I wish anyone with any kind of CPTSD, any survivor could have been there for that moment and heard those words because there was such a lifting of shame of this is not about you're not trying hard enough, you're not good enough for therapy, you're failing at therapy. None of those things are true. Your capacity and the way that your brain is processing is because of what has happened to you.
Speaker 1:It is not because you are bad or failing therapy or doing it wrong. It was one of the most empowering statements I have ever heard at any conference. It was so good. And it explains why we feel stuck in therapy and why we feel stuck in relationships. She talked about how our brains literally do not have the capacity to feel loved, to ask for or receive help, to receive praise, to eat or sleep properly, to build alliances with others, to have good experiences, or to experience pleasure.
Speaker 1:We are not able to do those things the way other people can do those things because we have, and I quote, an inability to experience positive affect in circumstances that are normally positive. So there are experiences that other people have like birthday parties that are positive experiences for them, but that for us feel dangerous and terrifying, not because we're not trying hard enough or because they're not good enough or because we're ungrateful, but because the way our brain works, it's literally not wired to receive positive experiences. So not only are we not able to experience positive experiences or interactions, But because we cannot, then those attempts that we try or bids, they would say, is that Gottman that says talks about bids? Because we can't do those the way other people can do them and we don't experience them the way other people experience them, that negative affect response that is incongruent with the positive affect response other people have causes an anxiety response, a guilt response, a shame response, which leads to despair. You guys, this is exactly what we were talking about this summer about toxic positivity and why it doesn't work and why it's actually damaging to survivors.
Speaker 1:She explained it. Did you hear that? Our negative affect in response to positive experiences and interactions are incongruent with other people's positive affects in response to those same experiences, which causes misattunement basically is what she's saying, which leads to an anxiety response, a guilt response, and a shame response because we are not experiencing the same thing that we can see other people experiencing. And that leads to despair. You guys, that's exactly what we've been talking about all year and what we have been enduring all year.
Speaker 1:When your window of tolerance is so small that you cannot experience some of these things, then it means when someone is kind to you, it feels dangerous. When someone gives you praise, it feels manipulative. When someone tries to validate you, it feels incongruent with how you feel about yourself. When you're in a foster family that's trying to do good things for you, it feels like they're betraying you. This is why everything was so confusing.
Speaker 1:This is what explains the Footprints episode. This is what explains the interview with the English teacher and all three of those episodes. This explains why even when you have a really good therapist, you feel like you're failing therapy. You guys, this is everything. It explains so much.
Speaker 1:And I found the notes that I was trying to talk about in last week's episode from the classes. It was Ellen Jepsen who said this about how externally people are dealing with ANPs, which in the brain do functioning. But internally, the experience of that interaction is through an EP, which has to do with memory time and processing in the brain. So the functioning experience externally with an ANP actually on the inside is processed as attachment, danger, and leaves them feeling either frightened or punished, which causes the survivor to act out either the fight, flight, or freeze response. Are you kidding me?
Speaker 1:You guys, this is so huge. I can't even explain how huge this is. Are you understanding what I'm saying? So what happens in the brain with an ANP externally is functional, but what you experience on the inside is through the filter of an EP, an emotional part that is processing and is about attachment and gets interpreted as either danger or punishment or sometimes both, right? And so even a positive interaction, even a positive experience triggers for a survivor a trauma response.
Speaker 1:So what she was saying was that ANPs inhibit the emotional part. And so like, basically, the feelings get stuffed, right? Whatever actual feelings are really there get stuffed. And EPs, emotional parts, are where those feelings go. So externally, everything looks okay, but internally, it's not.
Speaker 1:So here's what that comes down to. That boils down to this. This is so huge. You are not actually just avoiding the bad. It's that you cannot tolerate the good.
Speaker 1:How incredible is this? You guys, it explained so much to me. I can't even tell you. And that's why I needed to talk about it on the podcast. And I've invited her to come on the podcast and talk about it directly.
Speaker 1:But it explains everything, and it takes the shame out of it because you are not broken. There's nothing wrong with you. Your brain is responding exactly as it's supposed to when it has been impacted by trauma. So what are we gonna do about it? She answered that too.
Speaker 1:This was lovely. I loved this so much. She was delightful. She said that trauma therapy really works the same as a coronavirus response. So when we talk about what is the pandemic response, and I am not talking about The United States right now, but when we talk about how we were supposed to handle our response to the pandemic was by flattening the curve.
Speaker 1:Physical distancing, wearing mask, closing things down for a season so that the new cases did not overcome what the hospital was able to care for, right? Do you have that image of the flattening the curve, the charts that were all over the news for those early months? That's what we're supposed to be doing in therapy. That's why Robert Mueller said we need to slow down. That's why our EMDR class talked about containment and about slowing down and about not triggering things that are linked to other things, because we are supposed to flatten the curve down inside the window of tolerance by honoring dissociation, which keeps our system from being overwhelmed, and by regulating and meeting our needs, whether that's pausing a stimulus, or whether that's through breathing or body scans, or retreating for a time from whatever is triggering us by honoring our limitations through NTIS, like now time is safe, because if we do not, it becomes devastating.
Speaker 1:And that's what happened to me with the birthday party, and that's what happened to me this year, and that's what happened to me last year, and that's what we've lived through every day, and now I understand. She said that there is no good therapy that takes away our power. She said no intervention that takes power away from the survivor can possibly foster her recovery. That's so powerful, you guys. It was huge.
Speaker 1:I can't tell you how huge that was. It was so, so good. And the whole reason I keep using the birthday party example is because it was a positive event with good people who are safe people, who knew about my respectful of that and gave me a safe experience, not just on that day, but that through the wrestling of all the layers of it and honoring all the pieces of me have given me an entire year of a birthday party to learn how to be loved and to learn how to connect and to learn how to be cared for and to learn how to love back. You guys, our birthday is in February, and we're recording this in October. And it turns out the party's been happening this whole time because I did something brave one day when I had friends dare to show up and be kind.
Speaker 1:And through that experience, even though it has been so difficult and so painful, I have learned to tolerate that so that I have for the first time in my life stable friendships, and really lots of them. I have professional colleagues in a way I've never had before because the ISSTD is a safe place. I have professional friends who know I'm DID because I've met them through the podcast, and they have become friends over time, carefully, gently, safely, with good boundaries, and healthy people who also take care of their own stuff, and their good friendships with good people, and my own tribe at home who have their own issues that sometimes parallel mine and sometimes are just different, but where we take turns supporting each other and caring for each other. And these are good and beautiful things, and all of that happened because of a birthday party. And if you remember, the presents they gave me were pictures.
Speaker 1:And what I thought was pictures of the past to remember them by, which became ever more necessary when the pandemic happened. Those pictures ended up becoming symbols of hope, of what I can be, of how I can connect, of what being yourself safely with other people who are themselves, what that can mean. That's so powerful. Really one of the best gifts of my whole life. And I am grateful for these classes that have helped me understand that process and give me context to hang on to it because it's starting to get more solid, and it doesn't slip through my fingers anymore like it did before.
Speaker 1:Because you know what? My window of tolerance is growing, and that's a big deal. At this virtual conference about societal trauma and the impact on marginalized communities, There was also a session by Ellen Lachter, who was already on the podcast talking about child sexual abuse materials and child trafficking. So I would recommend that episode if you want to know more about she has to share about that. But as a trafficking survivor, I appreciated that.
Speaker 1:But as always with her and the topics that she speaks about, it was super intense. So it was interesting that once again, I was experiencing the meta narrative, learning to hold all of the good that I got from Ellen Jepsen and tolerating all of the nastiness that Ellen Lachter had to talk about and see what I could do with my window of tolerance and what I needed to do to care for myself to keep it open, but also respect my own limitations and boundaries for how much to push and when to care for myself and when to take a break and how to do that and what that looked like. And that's my favorite part about knowing myself well, even when it's hard work to do, is understanding what we need to care for ourselves, to comfort ourselves, because that's like practicing attunement with myself, and there's healing in that. Doctor Heather Hall also talked about the role of discrimination and social defeat in racial issues, And she's going to come on the podcast and talk more about that herself. And I'm very excited to have her on and hear her perspective and let her share her own story.
Speaker 1:She also presented another session with Michael Salter, who's also going to be on the podcast. And they talked about reducing shame and promoting dignity. And the thing that I loved about this session was that the focus was on how to prevent CPSD. And can you imagine what that is like? That we are learning so much about how things work in the brain and learning so much about how to explain what survivors and clinicians already knew intuitively, that we have progressed to the point to even include in the conversation about how to prevent it, not just how to heal it.
Speaker 1:You guys, that gives me so much hope. It was also in this session that Michael Salter explained about having CPSTD, complex post traumatic stress disorder, but the DSM five not including it. And while that's a whole different episode in politics and things that we're not gonna talk about right now, the thing that helped me finally understand what happened when that all unfolded was that there were three specific domains relating to CPTSD. And what the DSM five did was expand the definition of PTSD to include those three domains instead of adding CPTSD as an additional diagnosis. So does that make sense?
Speaker 1:That was a framework that helped me understand differently what happened with that. And so I just thought that you should have that explanation as well. They also quoted the 02/2019 study, the meta analysis of surveys of college students by Kate Hopwood and Janison, which is what documents that eleven point four percent of the population meets criteria for dissociative disorders and that twelve percent of the population have experienced multiple traumas in their childhood. This is huge. And having that reference is huge because it is not a rare disorder.
Speaker 1:That's more than ten percent of the people. And the science and the studies and the documentation of dissociative disorders is more than any other disorder in the DSM. So if you find yourself having to defend yourself or your diagnosis, that clinical provider either does not know what they are talking about or they are gaslighting you or both because it's all there. So it is worth it finding a clinician who knows how to help with dissociative disorders, and it is worth it for clinicians who work with dissociative disorders to learn more about them. Like, for example, joining the ISSTD.
Speaker 1:You guys, no one has told me to plug the ISSTD. I'm just telling you it is making that much of a difference in my life, but I am absolutely serious about it. Doctor Heather Hall and also Michael Salter in their presentation, they also mentioned that Judith Herman, who wrote the book that we're actually using as our textbook for the level one certification course with ISSTD, that she helped to move PTSD to a shame based disorder. So originally, if you remember, we talked about the history of trauma treatment and with veterans and all of that. If you go back to those episodes where we talked about that this spring, if you remember originally, dissociative disorders were thought to be just because of what happened, like just because of the trauma.
Speaker 1:And then over time they realized that there was fear involved, so maybe it was because of the fear of what happened. And now what's understood is that shame plays such a huge role that it's the shame not just of what happened, but that is used in the abuse itself. It's the relational trauma and the betrayal trauma that feeds the dissociative disorder that causes the brain to respond with that kind of trauma response specifically. So they quoted Herman talking about when caregivers are incapable of or refuse to engage in reparative action, persistently shaming responses generate pathology in the child's attachment patterns and behaviors. Do you guys understand this?
Speaker 1:This is why Simone's research this spring was so huge because it's not just child abuse. It's not just physical abuse or sexual abuse or what they did to physically hurt your body. All of that is bad. None of that was okay. Not one incident of that should have happened.
Speaker 1:But the relational trauma is neurologically worse than all of those things. This also explains why so many people have trauma and don't realize it's trauma. There are so many people who say they don't have trauma, but they're defining trauma in such a narrow view. They're not recognizing what counts as trauma. They said attachment figures who are incapable of repair or who actively humiliate, ridicule, or reject the child produce profound and chronic shame states that lead to avoidant and disorganized attachment and enduring psychopathology including CPTSD.
Speaker 1:So it's not just that your parents make a mistake or that you as yourself with your own children make a mistake. That's not it. Ruptures happen. If there's anything I've learned this year, it's that all relationships have ruptures, but healthy relationships repair them. I learned that from Robert Mueller and parents and caregivers who refuse to repair ruptures cause relational trauma.
Speaker 1:That is relational trauma. But they went on to talk about the micro and macro levels of social trauma. They talked about racism. They talked about institutional racism. They talked about historical trauma.
Speaker 1:They talked about all of these things that were so, so powerful. And I am excited for both of them to come on the podcast. Those were the sessions I attended live for the Congress on Societal Trauma and the Impact on Marginalized Communities with the ISSTD in October. There were other sessions that I will be able to watch followed up recording, and some of those people are also coming on the podcast. So there is more to share, I promise.
Speaker 1:But again, no one has asked me to say this. I just wanna disclose that. And if I'm saying it wrong and offending anyone there, then I apologize. But this stuff is changing my life. This stuff will change your life.
Speaker 1:It will change the life of those you help and those that you work with. If you are able to at all, please sign up for the ISSTD classes. You can even get a pass that's like a year long webinar class. And then if you have this pass, you can attend all of their webinars. It's incredible.
Speaker 1:It's incredible. I am excited about what we are learning. I feel for the first time like my brain is justified in what it has done. And if there is anything that can help me come to terms with my own identity development, it is understanding what has happened and why it has happened, and that it is not my fault, and that it is not because I've done something wrong, it's actually because I've done something right and my brain is working the way it was designed. That's a powerful thing.
Speaker 1:It is liberating, it is empowering, and that's what's so life changing about it. I am excited about these things that we're learning. I am excited about the application I'm seeing. I am excited and relieved to finally be in a place in life where applying some of these things, I'm starting to be able to see the difference. I am sleeping at night.
Speaker 1:I am eating regular meals. I have triggers and that's hard. I have alters and I have to navigate that, but I am present with my family. I have relationships with real people. I have colleagues because I'm functioning in a professional setting and I'm giving back to the people who have helped me and I am finding ways to make restitution and offer my thanks and gratitude for those who have helped me in different ways because I am a human being.
Speaker 1:That's what I've learned from these classes. That's what I've learned from these conferences. And that's a real gift just like the birthday party that's still going on, this everlasting birthday party.
Speaker 2:Thank you for listening. Your support of the podcast, the workbooks, and the community means so much to us as we try to create something together that's never been done before, not like this. Connection brings healing, and you can join us on the community at www.systemsspeak.com. We'll see you there.