Transcript: Episode 118
118. Clinical Response
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[Short piano piece is played, lasting about 20 seconds]
[Note: The contents of letters and emails being read in this episode are in italics.]
Oh, my goodness, you guys. We are on our way to therapy, and we stopped at the PO box on the way, and you would not believe what we got. I can't even tell you. The first thing is a card from Julie, not our friend Julie, another friend Julie. And it says: To all in the Systemspeak podcast, you have given me so many spoons over the last few weeks. So we actually learned about the Spoon Theory from the Stronghold System who came to talk to us about their perspective of the Structural Dissociation Theory and ableism and assimilation. She's actually the one who taught us about the Spoon Theory. So if you haven't heard about the Spoon Theory, you need to google it, or search it, or read about it, because it helps put so much perspective on how hard it can be to function.
And basically spoons are symbols of like tokens of energy, right, and everyone gets the same amount of spoons for the day. But when you have something like depression, or anxiety, or DID, then it takes more spoons to like get out of bed, and more spoons to take a shower, and more spoons to get dressed for the day, and more spoons to make sure that you eat breakfast. And so there may be some days that basic activities use up more spoons than other days. Or for some people getting out of bed and taking their shower and getting dressed doesn't take but one or two spoons, it's not a big deal to them. And so they have a lot of spoons left for the rest of the day. But for some people, when you have to use up all of your spoons just functioning, then it's really hard to have spoons left for things like friendship, and work, and podcasting [Laugh], or anything else, parenting. And so the spoons are an idea of just sort of symbolizing the concept that you really only have so much energy for a day. And when you are having to use all of your spoons just to function, then you don't have as many spoons left for other activities or interactions, because you've already used all your spoons up. And so it sort of gives the idea that if you know you have something big coming up, like driving to therapy for example, then you have to focus on saving all of your spoons for that. Does that make sense?
So So this card says: You've given me so many spoons over the last few weeks as I grapple with this does it say “shifty?” this shifty reality that apparently is the true reality, even though it seems like a plot device from Star Trek. [Laughter] Welcome to dissociation. It is a shifty reality. Oh my goodness.
She says: Please let me give a spoon to you. When you are out of spoons may the image of this one rise to your mind and remind you of the love and support you have from all over the world that is there for you. Because you have shared yourself so deeply. I will send an email later further explaining this particular spoon and its history. Thank you so much, Julie. I don't want to say the last name just for privacy. But that is maybe the nicest thing anyone's ever done. That's so kind. And it is just a classic gold spoon. It's beautiful and lovely. And that is so thoughtful and kind. Thank you so much Julie.
And then, you're not going to believe this. The other thing I had was a package from my friend Megan. Megan is one of the first people that I met at the conference last January, one of my very first friends who also had DID, who's also in the dissociation club. So she was very kind to me. And when I was in a very anxious place, sat with me at the bus stop waiting to get on the shuttle back to the airport from that conference with other survivors. And so I have a special place in my heart for her because she was very kind when I needed someone safe. And she actually just lives a couple hours away from me. So that's pretty fun. And, and she has sent us a package.
And here's what it says. She says: Hey, y'all! I hope you're doing well. We made these shirts for you, but Julie designed them. So really, she deserves the credit. Anywho, I hope you find them funny. They are meant in the spirit of humor. Best of love and keep up all the great work. We love the podcast. With love and safe hugs, Megan and her system. Oh, Megan, like so kind of you. Okay, so let's look and then I'll post pictures. Okay. Okay, so the first one, I'm totally gonna cry because you know, if you've been listening, you know what has been a hard couple of weeks of parenting. And the first shirt says, “I'm a mom to six amazing kids. What is your superpower?” That's amazing. I love it so much. Here's another one. It says, “I'm not crazy. I'm maladaptive.” Oh my goodness, Y'all. You girls. I just can't even here's another one. And it says, “The good doctor is in.” That's a funny talking about Dr. E. Oh, girls, you crack me up. Oh, wow, this one has glitter. Oh, we are allergic to glitter, I'm sure of it. Oh, my goodness. Thank you, Megan for this shirt. And I am so grateful. That’s super sweet of you and Julie, and very sweet of you to work together on the project. And this one is full of glitter. And it says, [Laughter] it's a gray shirt with red glitter, and it says “Hello pleasure.” Oh my goodness, girls, you crack me up. Thank you, Megan and Julie for the shirts that was very sweet of you to collaborate and work together on that, and to be so kind. That was really thoughtful and brings back a lot of sweet memories since we started the podcast last year. I love it so much. Thank you.
We so appreciate the emails, and the donations to the podcast, and the fun gifts at the post office box. It's really encouraging and helps us to keep the podcast going, even when it's super hard to be this vulnerable and to share this much, and to work that hard getting the good interviews. Because it is a lot of time, and it is a lot of work, and it is a lot of spoons when we sometimes don't have many. And to be in some of your most shame-filled places and share about that, or to talk about things out loud that are very very private or very very hard, is a big deal. And I think that in a lot of ways. it's brought us healing in ways we would not have had otherwise. And so it is a comfort and a strength to hear that it's also helped some of you. So we really, really appreciate hearing from you and getting that feedback and that encouragement. We are so so grateful for you.
The other thing that we got that we want to share is an email from our friend Dr. Barach. We became friends with him through the podcast, and he's continued to be a friend off the podcast, and we very much appreciate him. And I have permission to share this email. Because he listened to the episodes about the structural dissociation theory, and talking with the Stronghold System about the article that they released. So we will get on the blog at systemspeak.org, and go to the blog, and we will post a link to the original article she posted on powertotheplurals.com and then we will also with his permission, copy what he has shared in response from a clinical perspective. And this is something that I absolutely love about the podcast is that we're able to have these conversations, and we're able to talk back and forth about these things and share this perspective. Because when we have the perspective of the survivors who are in the experience, and we have the perspective of clinicians who know how to help with the experience, it's really a powerful thing when we work together and listen.
And one reason that Dr. Barach has been a safe friend for us is not just because he supports the podcast in a participating kind of way, but also because he's really brave and speaks his truth. And that's something that we respect about him a lot. And he has very consistently given feedback when he said, “Hey, you were learning about this, here's more about it.” It's always been very helpful to us. It's not always been easy. But he's always been very respectful in sharing information, and has been helpful in helping us put the pieces together.
So if you missed it, two episodes ago, we shared that we had read this article that talked about the Structural Dissociation Theory, and it being called out as ableist. And we were like, “Wait, what just happened?” And we went through the article sharing what the article said and her perspective on it. And then we did the last episode, which was, in which we interviewed the author of that article, Sarah Clark from the Stronghold System from powertotheplurals.com. And I really, really wanted to understand her perspective and try to wrap my brain around what she was presenting in this information and understand it. And a lot of people were talking about it. Because she does run the Facebook group AlterNation online. And so there are a lot of people in that group. So when she shares something, a lot of people are talking about it, and it becomes part of the community understanding. And so I wanted to explore that further so I could understand what it was she was sharing, and as well as let her speak for herself and hear what they had to say about it directly. Does that make sense? So it was a wonderful conversation, hearing her side of things and her perspective.
And then Dr. Barach responded with lots of information about this sort of clinical perspective in response to what she shared. So I want to read that as well. And then I will post it on the blog also. The first thing that he reminded us is that nothing in the DSM is real. And he gave the example like in the same way that a flower or ice cream is real. It's just a system of categorizing things. And that's a good perspective. He's not saying DID isn't real. He's not saying altars aren't real. He's not saying your experience isn't real. That's not what he's saying. He's saying the label itself is still sort of unfolding, and not always entirely accurate, and there's more depth to it then just the label itself. Because the label in the DSM is not that it's going to fit everyone exactly. Because really, it's just categorizing groups of symptoms. That's all the DSM is. And so sometimes I feel like survivors work really hard to get themselves out of being pigeon holed. Which makes sense, while that would feel like entrapment a little bit, and why people would not want labels on their forehead. I totally understand that. And I also get how that happens because of managed care and all kinds of reasons. Like, that's a whole different podcast if we talked about it. But he's just saying the reminder that all the DSM is is a classification system for categories of symptoms. So how things end up in one category or another is a matter of psychiatric politics.
For example, PTSD used to be classified as an anxiety disorder, but now it's in the trauma disorder category. And as he shared with us before, 95% of people with DID report a history of extensive childhood trauma. There are even some studies confirming the trauma histories of groups of people with DID. However, DID is not in the trauma disorders category in the DSM, it's in the dissociative disorders category. So go figure. As Sasha said, in one of the podcast a while ago, “That's maladaptive.” He cracks me up. He's so funny.
Do you see? So that's so true. So even though they can document trauma histories of people with DID, DID itself as a category is lumped in with dissociative disorders for obvious reasons, not isn't a trauma disorder. And so that doesn't mean that DID people don't have trauma, it's just how they have classified it. For better or for worse, it's just categories. That's all it is, is categories. And so we have to remember the context of the DSM itself rather than giving it too much power, and advocating when the power is sort of misused or misunderstood.
He also said: The whole issue of OSDD versus DID to me exists only because some psychiatric folks wanted two categories. There are people diagnosed with OSDD whose inner parts never front, and who don't lose time, unless there is heavy stress. So if I evaluate them on a low stress day, the diagnosis might be OSDD. But if my evaluation happened during a higher stress period of life, they would get diagnosed with DID. So even when we're talking about functional multiplicity, how that gets diagnosed or classified or categorized by the DSM may depend on just how you present that day. Which goes back to what the Stronghold System was sharing about being overt or covert. It may just depend on the day and what's going on, and whether the people in front of you are safe or not, or how much they understand or not.
If I'm texting someone who doesn't know me very well, we're going to give a very consistent presentation because we either won't reply to them when we're not able to, or we are the same person is always going to handle that. If I'm friends with someone, like with Dr. Barach or my friend in real life-. I mean, Dr. Barach is also in real life. [Laughter] I just mean I don't get to hang out with him because we don't live in the same place. But you know what I mean. But my friend who knows me well, and I get to see her, and our children can play together, and she knows about DID, any of us could respond to her and it would be okay. Any of us could respond to Dr. Barach, and it would be okay. So that is more overt not necessarily because it's more pronounced or more, like, because there's regression, so much as it's just more safe to be open. And so it just sort of happens kind of like in the therapy office, right?
If you have a therapist that isn't safe, or is new, or that you don't know yet, or you're not comfortable with, or while you're still building sort of the safety phase of therapy, you're not going to be as switchy as once you finally believe that they're okay, and you're okay, and everybody's okay to be in the session together. And then it's all kinds of wackadoodle. Like, we're so switchy in therapy now, there's like 80 people participating at the same time. I'm not really, I'm exaggerating. But that's what it feels like. And so now it's a very different experience going to therapy than in the past where it was just one person, or taking turns, or something more solid in that way. I don't know if that makes sense. But I think that's what, part of what he's talking about.
And then he goes on to talk about the soup metaphor that they offered in the article, where they were talking about functional multiplicity as in part of a whole, but still with distinct parts like in a vegetable soup. He said that he doesn't like the soup metaphor at all. He would prefer a musical metaphor. Which makes sense because he loves music, like that's his thing. That's a whole different story and not my business to tell on the podcast. But he's a musical genius, you should know. He's good at listening to music. If he lived here in the same state or we lived there, he and the husband would just like nerd out all the time. [Laughter] I would not get to be as friend because my husband would be his friend. [Laughter]
Okay, he says: Good treatment for those who want it can lead to an ability to be aware of all the separate lines playing in a complicated piece of music. But at times, everyone plays the same thing or plays in harmony with each other. Without treatment, there are always some players or parts that don't get heard, while others must play as loud as possible to be heard or drown out other players they want to suppress.
Now, I love this. He has said this from the beginning, from our very first interview with him on the podcast. He talked about this piece that it's less about whether you should integrate or not, or functional multiplicity or not, and more about stay in treatment, find a good therapist and stay in treatment. And I'm kind of having to agree with him on this one from our own experience. Because for us right now, as someone who's newly diagnosed, only not new anymore. But like two years in and really starting to engage with a therapist. The whole point is to not quit and not give up. And to keep going. Even though right now, it's actually about to get super hard. And that's terrifying. I don't know what that looks like. We talked about it inside, we talked about it in the notebook, and we talked about it with the therapist. We even talked about it with the husband. Like things are about to get ugly. And I'm not sure there's any way around it, which feels pretty unpleasant. It would be a good time to just like skip town, right? I mean, not really. That's not even funny, because we've done that. No, no, no. Okay.
So, so for us right now, what functional multiplicity looks like, is not something—for us, I'm only speaking for us—and we're in the context of finally having a good therapist and being in treatment. And so I know, there's that layer of privilege, like we talked about on the Stronghold System episode. But in our context, with a good therapist, and good treatment, what functional multiplicity looks like is not something that is instead of integration. It's not an either-or choice for us, is just a natural part of the process. And so right now what what functional multiplicity looks like right now is that we are able to communicate in the notebook and internally. We are able to show up to parent when we're supposed to show up to parent. We're able to show up for work when we're supposed to work. We're able to interact with the husband when we want to interact with the husband. We can work hard and play hard and have the boundaries to also rest and take care of ourselves when we need to. We have adapted what our work is like, what our job is, so that we provide for our family and do what we can to help bring in an income to feed our children, but in ways that is safe for our workplace and safe for us. And so all of that is maintaining functioning. We are still in the process of healing because of DID. Not even because of DID, but because of what happened to cause DID, right? So for us, that's trauma. But we brush our teeth every day, and we eat every day, and we sometimes sleep. And we you know these things that measure functioning. The house is clean, the laundry is done, we're taking care of the children. Even though that's very hard work, we're trying to do a good job. We're not perfect at any of those things. But we're doing our best, and that counts as functioning. So for us right now, that's what functional multiplicity means. It doesn't mean we're at an end state that we've chosen instead of integration.
And I feel sometimes when it gets talked about, it's offered as an alternative to integration. Which I understand why they're saying that, especially for people who don't have access to treatment, or don't have a good therapist, or have a therapist who's only focused on integration, I get why that's violating and why that's not helpful. And in that way, it should be advocated that functional multiplicity is an option. Just to stop people from the black and white, you have to do it our way, kind of thing that's triggering some of these people in those conversations. But as a process, it's just part of what happens as you learn to work together as a system. Does that make sense? So that's important for me to share.
But here's the other thing that he said. He said, I should also say that although I'm familiar with the Theory of Structural Dissociation, I have not read The Haunted Self, which the Stronghold System mentioned in her article. But I've read other articles on that theory by the same authors. And then there are some links given which I can include in the blog. He says, I had the impression that there was some lumping together of things in Clark's article that are actually different.
He says, Charles Meyers wrote a book in 1940 describing veterans of World War One in France who had shell shock, which of course is now called PTSD. So Stronghold System referenced that in their article, and he's going back to that point to clarify some of what she said. He said that there are emotional personalities referring to behavior during flashbacks and trauma-related nightmares, and apparently normal personalities who are detached from the experiences of reliving trauma. So Dr. Barach said, I think he used the term personality in a much looser sense than we think of parts or alters, whatever word we use, in DID. He was not talking about survivors of childhood trauma either. Myers was not talking about parts or alters with different names and ages. An example of this is a veteran with PTSD working as an auto mechanic who hits the ground when there is a loud noise at work, such as a tire popping suddenly off its rim. This is an automatic response without thinking or planning, and leaves the veteran feeling embarrassed. So that's someone who's been through something and is being triggered, and reliving the past in the moment, but as a whole person, not someone with parts.
Van der Hart always mentions Myers when he uses those terms, ANP and EP, so I disagree that he and his co-authors have appropriated or stolen these labels. Van der heart is also clear that the Structural Theory of Dissociation is talking about ANPs and EPs that are more elaborated than the ANP and EP ideas of Myers. So he's saying that van der heart actually clarifies this really well and speaks to it in his writings. Myers wrote, quote, “Now and again, there occur alterations of the emotional and the apparently normal personalities, the return of the former often heralded by severe headache, dizziness or by a hysterical convulsion.” Well, I am frequently hysterical. That's crazy about the headaches that they knew that back then. On its return, the apparently normal personality may recall, as in a dream, the distressing experiences relived during the temporary intrusion of the emotional personality. Oh, so that's not part but it is like a different experience, a different state being experienced.
See? This is why we need to talk about these things to learn about them.
But here in comparison is an excerpt from a 2010 article by van der Hart and others. The EP range in forms from re-experiencing unintegrated or aspects of trauma in cases of acute post-traumatic stress disorder, to traumatize dissociative parts of the personality in dissociative identity disorder. So Dr. Barach says it's wrong to say that Myers was talking about the same thing as DID when he wrote about ANPs and EPs. And it's also not right to say that van der Hart was using the same thing as Myers, because they're actually talking about different things, even though they're using those words to differentiate between the different kinds of responses.
And then he also called us out and corrected us, and said that we said in the first episode when we were talking about the article that Structural Theory of Dissociation doesn't account for the creation of ANPs later in life. That's something we hear people talk about in the online community a lot. And so this is brilliant that he actually has an answer to that. He says that it does address that. And the article that he linked to, which we will put in the blog, actually mentions an example of this on page 10. He also-. Oh, this was brilliant. I love that he took the time to teach us. Dr. Barach, 1000 shoutouts to you. I appreciate you taking the time to educate us, and to share with us, and to explain these things, so that as people wrestle with these questions, which are legitimate and authentic and well intentioned questions, we can actually find good answers and clinical research about them. And so I thank you, thank you, thank you for sharing this information. He shares three more things.
Number one. He says, It is possible for people to have parts and not be distressed by it. But Clarke was half wrong when she said that that would mean someone with clearly separate parts wouldn't have a disorder according to the DSM. Every diagnosis in the DSM requires either clinically significant distress or functional impairment. If someone had parts, but wasn't distressed by having them, but was not functioning well in relationships or work because of the parts fighting for control or switching a lot, that was still counted as a disorder. That's fascinating. And I think that's why she and the others in that group are pushing for functional multiplicity to emphasize that they are not distressed by it and also are functioning in relationships or work. Does that make sense? So I think this is good and helps us understand why what we mean by functional multiplicity is not the same thing as what they mean by functional multiplicity. Because in our experience, it's part of the natural process while in treatment, and functioning begins to improve, but you're still healing from trauma. For them, it is an alternative to integration, a conscious choice. And they are neither distressed by it, nor feel that their functioning is impaired. Which is why they think it's not a disorder. Which is why now they refer to themselves as the plural community, rather than the DID community. I think that's right. If I can follow the steps of logic of what they presented, and the way that they talk about it in the online communities. I think, I think I understand that. So I want to be sure that I said that accurately. She can correct me if I've not.
Number two. She said that there are people who have DID without a trauma history. He said, Maybe so but that is actually an empirical question, and where's the data? There are a number of published case series showing extremely high rates of childhood trauma. Like 95% or more reported by people in clinical settings who have DID. There are also some people who believe they have DID, but actually they don't; they have just assigned names to aspects of themselves. I would also add just for my own history, that there are people with DID who either don't know they have DID, or don't know that they have trauma yet. Like they don't know it yet. Because other parts hold that. So I think there's lots of layers to that. I think there's lots of layers to that, and it gets really sensitive really quickly.
Number three. Although the proponents of the structural theory may say that treatment should take place through the ANP, that treatment idea does not necessarily follow from the theory. And while the structural dissociation folks may be teaching therapists to work directly only with an ANP, that is not what a lot of other experienced teachers in the dissociation field are teaching, including him, Dr. Barach. I well remember Richard Kluft saying very clearly that you cannot treat someone with DID unless you are working with the alters, using his preferred term at the time. So he's saying there may be a specific group of people who are teaching only to work through the ANP, but that that's not actually common practice, and that that's not what everyone is teaching.
And I think this is another example that goes back to even our interview with Kathy Steele about how there are different perspectives and not everything applies to every person. And how clinicians intuitively, when they are good researchers, and have good training, and have gained experience and trust themselves, and even their client, that a lot of good comes about that is not even in the books. And it's another reason why conversations like these are so important, even though they can be really trixie trying to make sure that you fully understand the other people's perspective. So that there can be conversations and we learn from each other. Because I think when there are people who do not have good therapists and do not have access to good treatment, what they have to go on is very limited. And when there are people who have had experiences with bad therapists--like we, even ourselves have had some really bad experiences that were very challenging—that can be so violating, and it's hard not to lump everyone into a category.
So one thing I hear a lot on the online communities is “the DID research says this,” or “clinicians will say this,” or “therapists always think this.” And I don't think that you can lump everyone together like that any more that we as survivors want people to lump us together as the same as everyone else. Because, first of all, besides anything else, therapists are human. And clinicians are all different, and have different experiences, have their own histories, have learned from different people. And so while we do want to advocate for improved treatment and greater access to treatment, I don't think that it's fair for us to assume that therapists as clinicians, or the field as a whole, is automatically just out to get us, or out to condemn us, or trying to dismiss us. There's some balance in there somewhere where if we're going to learn from each other, and if we're going to learn together, we have to listen to each other and we have to offer the benefit of the doubt in good and safe ways.
I am not saying that those people out there who take advantage of their power, or take advantage of people in any way shape or form, that that kind of abuse is okay. I'm not saying that. But I am talking about safe therapists who are doing a good job and trying their best, that there's room in there to accept that for what it is and to receive from that without causing further division just because of different perspectives.
And I love that we are able to have conversations about hard topics, and interact with each other in healthy and positive ways, learning from each other and listening to each other. And understanding why someone is caught up in something. And understand why a particular issue is so triggering to some. If there's a group of people who are all stirred up about integration being a bad word, there's reasons that they feel that way. There's things that they've been through that make that hard for them. If there are clinicians, who say, “This is how you should treat DID,” but it doesn't fit some people, I promise there are other clinicians that are doing it differently that you could work with, or learn from, or listen to. And when there are new clinicians, there are lots of people and lots of different ways to learn and to study and understand why there are different choices for helping people.
So I am grateful for the spoon. These shirts are crazy. I don't even know what to do with these shirts. And Dr. Barach, his email was very thoughtful and kind, to share his perspective and fill in some of the clinical pieces. I feel like he has been a treasure we did not see coming because of his timeline, and his experiences, and the things he's able to piece together and help us make sense out of. I so appreciate you and I will email you privately. But I just want to give a shout out because you have been so brave to participate on the podcast and to shed light and understanding on some of these pieces that our listeners would not otherwise know how it works, or why it's that way, or or how it came to be. And those are important questions as new generations come up, that we work together with the people who know the field, with the people coming into the field, with the people who have already been in the field, and survivors themselves of every generation, that we work together to make things better. For the future, for each other, for access to services, and for good treatment. So way to be a team player, Dr. Barach.
Thanks for listening guys.
[Break]
Thank you for listening. Your support really helps us feel less alone while we sort through all of this and learn together. Maybe it will help you in some ways too. You can connect with us on Patreon. And join us for free in our new online community by going to our website at www.systemspeak.org. If there's anything we've learned in the last four years of this podcast, it's that connection brings healing. We look forward to connecting with you.