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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:Okay. So normally this would not really be the appropriate venue to share what I'm going to share, but I was sort of redirected back to my own venue. So if I have to stay in my own lane, then this is the lane that I have. And so I'm just gonna go ahead and share as it is because it's a reflection of my own process of learning what are those lines for advocating for myself, advocating for others with trauma and dissociation issues, and also just practically and professionally, and where to do that and how to do that and what is being accepted and what's not. And so I'm just I have debated for several months whether to do this or not.
Speaker 1:And so I'm just going to do it because it's part of my own process, which is the podcast. And if it's not appropriate for a professional arena, then this is the place that I have to share. And so it is just my process. So I'm just gonna do it with good intentions in that context. What I want to share is an article that I wrote.
Speaker 1:I submitted this article to the Journal of Trauma and Dissociation, and I want to read you the article. The reason I wrote this article is because I gave a presentation about cultural humility and about the impact of trauma in the therapeutic setting because of clinicians who do not have cultural humility. And I posed it really as an ethical and competency issue. And in this context specifically about clinicians who are not understanding the culture of plurality so I don't think people who are not clinicians necessarily have the understanding to tell clinicians how to assess clinically what's going on or how to treat clinically what's going on because there's a gap in knowledge there. Right?
Speaker 1:And so I understand that. I absolutely understand that. There's professional humility in that just like cultural humility on the other side right? But at the same time there is a quality of lived experience that absolutely should inform the clinical experience and clinical treatment that will either make treatment more effective if that is responded to or less effective if it's not. And right now just because the internet is what it is and because the online community is so accessible to so many even though obviously not everyone who has DID or OSDD is involved in the online community.
Speaker 1:It's still a thing and it's impacting thousands and thousands and thousands of people all over the world with DID or OSDD and I don't think that clinicians can ignore this. And if we don't educate ourselves about this aspect of the experience, then they are working from entirely false assumptions, and it's absolutely going to change things clinically and for treatment. And so I approach this of there's this gap in knowledge in the literature. And if it's not in the literature, then we need to put it in the literature. And the only way to get someone to study something or research something or talk about it in the literature is to give it a starting place like a reference point.
Speaker 1:Right? And so I had, I don't know, the audacity to think that I could write this article. And so I'm just clarifying where the article came from and why I wrote it because I just thought if we could get these terms into the literature then people who have access to research or are able to do research could do legitimate research about it. But as a qualitative introduction to put the words and the language and bring awareness to the gap in literature, I thought I could write this introduction article that then we could build on clinically in appropriate ways and reference for further actual research. I myself am very limited in what research I can do simply because I'm not associated with a review board or an organization who has a review board.
Speaker 1:So even though I know how to research and even though I have done research in the past, I am not currently associated with a university or an organization with a review board that could do proper research for literature in a quantitative way. That in itself is a whole different frustration and an entirely different nerd podcast that we could talk about that would also have layers of cultural humility to it. But for the sake of academia and for the sake of professional research, this is just what I thought I could contribute was a simple article that broached the topic and introduced it for discussion even though others may disagree that maybe we could at least get it into the literature and people talking about it. So I'm going to skip the abstract and just read the article so that I can share what I tried to do. The article was titled Ethics Cultural Competency Regarding the Online Community of Plurality.
Speaker 1:Ethics are defined as the process of dealing with values related to human conduct with respect to the goodness and wrongness of certain actions and to the goodness and badness of the motives and ends of such actions. Or more specifically, it is the consideration whether an action is responsible. The American Psychological Association, as well as other accrediting or licensing bodies, agree upon an ethical code as a process of making decisions regarding professional behavior. These ethical codes include modifiers that allow for professional judgment while attempting to eliminate injustice or inequality and guard against rigid rules that might quickly be outdated. An ethical dilemma arises when these priorities conflict, either internally for the professional or externally between the therapist and client.
Speaker 1:These decisions are made with the critical outcomes with consequences that may be layered for the therapist and life changing for the patient. In this way, the process of ethical decision making is as important as the outcome itself. The APA and other accrediting bodies include a culture as one of the boundaries of competence. Emerging areas not yet covered in either preparatory or ongoing training is also included as a boundary for which the professional is responsible to take reasonable steps to ensure competency. One emerging area with a significant gap in professional literature is the online community of plurals, united through support groups for dissociative identity disorder and social media hashtags, signifying dissociation as a common experience.
Speaker 1:Online Community as Culture. The online community refers to a broad spectrum of internet platforms and the people who utilize them. In this paper, the online community specifically references the variety of dissociative disorder support groups moved to Facebook since the original groups on Yahoo two decades ago. The dissociation hashtags on Twitter, including the weekly organized DID chat, similar hashtag use on Instagram, as well as discussion threads on Reddit, Discord, and private servers such as those hosted by Chris Itterman's United Front an online individual and group coaching and classes for dissociative disorders, and the Plural Association, an international nonprofit with dissociative disorder Warmline. In addition to these, there is extensive network of YouTube channels presenting as people or systems with Dissociative Identity Disorder, some of them with hundreds of thousands of subscribers to their channel, and some of those videos with more than 3,000,000 views.
Speaker 1:The primary focus on this aspect of the online community is identification with and support for the current ongoing experience of plurality, a term coined to be more inclusive than only that of traumagenic multiplicity as described below. A different aspect of the online community is that of those attempting to provide resources focused on healing trauma. The many number of memoirs and conference speakers with lived experience are an example of this. More recently, there are some podcasts, including System Speak, which is my only disclosure for this paper, which have become a part of the online conversation of lived experience and both how to cope with and how to treat trauma. Beauty After Bruises is an organization of support for treatment of complex trauma in The United States.
Speaker 1:An Infinite Mind hosts the Healing Together Conference every January, bringing together those speakers for sessions geared towards survivors and those who treat them. These resources and events add to the in person pre pandemic and shared experiences of the online culture, making it more three-dimensional than only being online. Further, connections made through these shared experiences have given birth to more intently focused experiences organized by plurals themselves, such as the now annual Plural Positivity World Conference, the PPWC. These online support groups, discussion threads, resources, and shared experiences have evolved over the years into a more organized state, both linguistically and politically, making plurality its own culture, which will be discussed below. This organization as a community developed not only through shared experiences online and at conferences, but also in the therapy office itself.
Speaker 1:The shift from the abreaction based therapy of the 80s and 90s to the staged approach of the late 90s and 2000s developed into a more recent structural dissociation emphasis on communication, cooperation, and collaboration. Plurals worked so hard to apply these principles within themselves that they easily accepted these principles as rules of society collectively, creating trust among groups where there had not been before, communication amongst leaders of the community where they had competed before, and collaboration amongst groups which had previously been isolated. In essence, plurals took what they had been asked to do internally to develop safety and stability and implemented externally to create a community in a way that had never before existed. Culture plays a significant role in the vulnerability to experience of and recovery from mental health sources of distress, including interpersonal trauma. Culture refers to shared values, practices, and beliefs of a group of people that characterize the diversity in social groups and is tractable in all people and groups around the globe.
Speaker 1:Further, individuals within a collective group are unique such that stereotyping anyone becomes both ineffective and inaccurate. So also, the reader is reminded that culture is dynamic rather than static, meaning that just as our understanding of the online community is different today than it was twenty years ago, this will continue to shift and evolve into the future as well. That being stated, there is a general meaning making process that happens when social groups interact with each other and emotion specifically, which creates new and binding understandings of social responsibility. This collectively as a culture, even with its own use of language, impacts how trauma survivors hold multiple identities simultaneously that influence their own conceptualizations of trauma, therapy, and the recovery process. Clinical implications.
Speaker 1:There are three primary clinical issues with the online community. One is simply understanding the culture of the online community so as to practice competently with those patients who identify as part of that culture, including understanding various terminology often utilized, which may be different than historical dissociative language with which the therapist is already familiar. Second is simply whether or not to recommend these resources to a client, and if so, when to do so and within what parameters. Third is to understand the impact of the online community culture on treatment itself. First, regardless of years of experience or knowledge of models and techniques, it is difficult for the clinician to ethically treat a patient from a culture of which the clinician is unaware or denies.
Speaker 1:The APA's clinical practice guidelines for the treatment of post traumatic stress disorder in adults specifically states that attention to cultural context is required component of trauma informed mental health care. Christine Courtau and Laura Brown responded to the limitations of these guidelines with an emphasis on a more ecologically informed model that accounts for the body of research on the psychotherapy relationship, psychotherapy process, and a broad range of psychotherapy outcome. Adding to this, Jana Henning and Bethany Brand reported that the guidelines do not adequately address aspects of treatment that are crucial to training about trauma, such as considering the client's cultural and individual needs. This call to cultural competence via prioritizing awareness, knowledge, skills, and cultural humility is a critical part of the ethical treatment of trauma survivors. Linguistics.
Speaker 1:In the past decade, especially there has been a movement toward person first language in effort to emphasize the whole person rather than traits that might identify them such as disability diagnosis. It became a matter of respect from the clinician and dignity for the patient to shift from DID client, for example, to person with dissociative identity disorder. In more recent trainings, however, there's been an added push against even that stigma to provide a more non pathologizing approach in dropping the disorder and simply using the phrase person with dissociative identities. Along with this has come the use of DI instead of DID, as well as with the more casual term multiple. While appreciative of these advances, the online community has generally responded to this shift with two more linguistic developments.
Speaker 1:First, that dissociated identities maintains a diagnostic based orientation, which feels both confining to the therapeutic setting, which in reality is an experience of privilege not afforded to many for long, and limiting to the specific timeline of being in therapy in contrast to the lifetime of lived experience. Secondly, it excludes those who are not yet diagnosed, those who consider themselves multiple but not disordered discussed below, and those considered themselves multiple without any history of trauma also discussed below. For this reason, the broader and more person centered term of plural was formally adopted in 2018 with extensive collaboration among support groups online, a variety of proposals submitted from plurals themselves, and then actual voting across the different support groups and a variety of platforms, which was in itself a historical moment for plurals as they organized together in a way they never previously had. More than 23,000 votes were cast. Once the community had established a term with which they could identify themselves collectively, the online community recognized its progress in collaborating together despite their difference.
Speaker 1:With this came agreement on common goals, increasing the safety of online support groups, calling out misrepresentation in movies and other entertainment media, a push against stigma via the development of DID Awareness Day, and a call to be more inclusive in support groups of those who are not yet diagnosed or who have other dissociative disorders besides DID. With that came PPWC for which I was asked to take a general public survey designed by them through voting for their own use as a community, not research approved by any internal review board. This is not uncommon in that culture with online public opinion polls and annual surveys as an optional part of registration with Healing Together Conference. The results of this survey were shared as a poster session in the twenty twenty Annual Conference of the International Society for the Study of Trauma Dissociation and publicly posted on the System Speak podcast website. Interesting to note that even after voting to adopt plural as the term of choice, thirty five percent of respondents instead identified as DID, only twenty seven percent identified as plural, and 22% still identified as multiple, indicating less than a third actually prefer the term plural despite the advantages agreed upon in voting to adopt the term.
Speaker 1:In contrast, only 3% of respondents stated their goal for therapy was integration, while a majority of 78% reported their goal for therapy was functional multiplicity. The new buzzword that describes making progress enough in therapy to be able to communicate, cooperate, and collaborate, but without requiring integration as an imposed objective, though it may happen naturally or by choice. Related to this, five percent of respondents reported their therapist was insisting on integration as a treatment goal. Twenty percent reported their therapist had never discussed it at all in any way. Twelve percent did not think their therapist knew what functional multiplicity was.
Speaker 1:And fifty percent reported that their therapist agreed functional multiplicity was a reasonable and healthy goal. Another part of what came out of that survey process of nearly a year of discussion and voting was language identifiers regarding ideology of plurality defined by plurals themselves. Of these responses, answers included the following. Thirty eight percent, Traumagenic adaptive. I am this way because of trauma and still use dissociation adaptively to deal with life, but not necessarily intentionally and not as part of my intentional cultural expression.
Speaker 1:Thirty four percent, traumagenic. I am this way because of trauma. Thirteen percent, traumagenic cultural. I am this way because of trauma. Feel mostly in control of my symptoms and have intentionally adapted to it as a cultural life style.
Speaker 1:2% endogenic, I was this way before I was born, but not because of trauma. And 1% exogenic, I was this way since I was born or grew up this way, but not because of trauma that I know of yet. Further, other more politically correct terms were agreed upon during the voting process prior to the survey, specifically for terms of certain types of alters or parts that are frequently misunderstood in the clinical setting. One type of alter that needed a more appropriate term was what trainings and presentations offer referred to as animal alters or alien alters. The plural community decided that it was more appropriate to call these nonhuman alters to be more inclusive, to decrease stigma, and make fewer assumptions about them.
Speaker 1:The alter needing a new label for its type was term fictive, a word that describes an alter that is what books and manuals would have referred to as an introject in the 1980s, which was forty years ago and before more than half of the online community was even born. Rather than being a psychodynamic process related to family of origin or a character from a beloved book with which the patient identified, the fictive is an alter that mirrors a character from media such as movies, anime, or video games. This simply reflects a change in cultural preferences three generations later, which provides a very different presentation than those who grew up in the 1940s or 50s or 60s, but make them no less legitimate. Politics. As with any group or community that organizes, politics played an early part in the plural community.
Speaker 1:Subgroups of the plural community includes, among others, a high number of individuals with disabilities individuals who are autistic preference in processing online rather than in person, and individuals of the LGBTQ plus community connecting via virtual landscape rather than local geography. It was from these historical rights movements that the plural community formed its politics. These politics gained momentum through the summer uprisings and protests during 2020, giving the online community language for what they experienced in their own therapeutic journeys. Reindeers reported that in the average time from seeking treatment to receiving a correct diagnosis of DID, the average person receives four incorrect diagnoses, spends seven to twelve years in mental health services, experiences years of inefficient pharmacological treatment, and endures several experiences of hospital admission. Each of these experiences adds to the trauma of lived experience, and those years of isolation from appropriate and effective treatment are a collective historical trauma experienced by survivors that feels reminiscent of the dyadic trauma dynamic.
Speaker 1:The question, aside from the experience of plurality, becomes who am I while I wait for correct treatment? This does not even include the time it takes for good therapy, which can be decades for relational trauma. Plurality provides a whole life encompassing identity with which one can identify and with which ego states can agree regardless of the weight. Further, while plurals wait for treatment, they now have access to each other in the online community. In a podcast interview with Clough, we discussed how therapy used to be a single point focused experience.
Speaker 1:Clough described the dynamic of decades past as the therapist's office being the only outlet in safe space for a survivor to do therapy. In contrast, now there is a diffused focus experience of therapy because the survivor also has experience to published works, online resources, virtual support groups, and social media, YouTube, blogs, podcasts, conferences, and organizations. This access to knowledge, emotional processing, and somatic practice on their own time empowers plurals in a way very different than other therapeutic generations. Yet, plurals also have access to more advocacy work than any other generation. Judith Herman wrote that the systematic study of psychological trauma therefore depends on the support of a political movement, powerful enough to legitimate an alliance between investigators and patients and to counteract the ordinary social processes of silencing and denial.
Speaker 1:That is the goal of the System Speak podcast that began in 2018, to bridge the gap between clinician and client. And that was the goal of the plurality movement that began to organize in 2019, starting with what advocacy they already knew how to do through other political movements. The motto became nothing for us without us, a slogan used to communicate the idea that no policy should be decided by any representative without the full participation of members of the group affected by that policy. Historically, this involves national, ethnic, disability based, mental health, and other marginalized groups. The phrase originated in Central European political traditions in fifteen o five, and then again in the early nineteen seventies by disability advocates in South Africa.
Speaker 1:It was next adopted in English in the nineteen eighties by James Charlton for disability activism in America before being taken up specifically by the GLBT community during the HIV and AIDS crisis. Within this framework, the plural community called for collaboration with the clinical community to prevent and reduce ruptures in the therapeutic alliance, to co lead solutions, and to accept lived experience as the best understanding of barriers to treatment. They also formally requested to be included in the revising of treatment guidelines, as well as being given fair compensation and credit for their participation in research. Australia approved an example in response involving Kathy Kesselman, a person with lived experience and coauthor of Blue Knot Foundation's twenty nineteen practice guidelines for clinical treatment of complex trauma, as well as providing advanced copies for review and endorsement to community leaders prior to their release. The online community has had a great deal of discussion about whether or not the ISSTD team currently updating guidelines for adults and writing new guidelines for children will reach out to the community at all or not and what support they will give or withdraw if that does or does not happen.
Speaker 1:Clients recognize that they have opportunity to become active agents for change in their own behalf. That being said, the subgroup of the pleural community who identify as plurals but are neither distressed by this nor experiencing impaired function would not be disordered according to diagnostic standards, and so excluded from the need for review of treatment guidelines. When applying an ethical framework to these populations, foundational principles still apply. Doing no harm, promoting welfare, self determination and autonomy, fidelity, faithfulness, and keeping promises, justice, equality, and fairness, and veracity and truthfulness. Doing no harm is nonmaleficence, while avoiding the doing of harm by promoting welfare is beneficial.
Speaker 1:Autonomy references the client's right to choose their own course of action, which could be referenced developmentally as self determination. Fidelity has to do with honoring commitments made to clients, which includes adhering to other foundational principles as described above. Justice means providing equal treatment to all people, which includes the work of acknowledging our own bias and privilege in both the therapeutic relationship and the therapeutic process. Veracity refers to being truthful and acknowledging errors rather than deceiving or participating in the microaggressions of oppression, the misattunement of dismissing lived experience from the patient's perspective, or failing to grasp the impact of the patient's cultural perspectives and meanings. These values are common to all the helping professions.
Speaker 1:While many patients have little to no interaction interaction with the online plural community, an increasing number of them will due to younger generations' organic fluency in the online world. Lacking awareness of the development While of the online community as a culture for trauma survivors and plural specifically at this point could be considered maleficence while educating oneself on the dynamic of the community online becomes simple beneficence. The therapist must avoid assuming they know the correct answer in advance. The therapist's role is not to lead the clients to a particular conclusion even with treatment goals such as integration, but to walk the client step by step through the process. Clinicians need to consider Plurals' increased awareness of their own autonomy even in treatment goals such that functional multiplicity ought to be included as an option along with or instead of integration.
Speaker 1:Many already practice this in their offices, but without it in the literature or guidelines, plurals continue to endure microaggressions from therapists poorly educated or overly focused on their own agendas. In the stage based approach of treatment, functional multiplicity will happen naturally prior to and or regardless of any kind of fusion or integration. Giving a name to the experience of breaking through the confusion and chaos by the process of communication, cooperation, and collaboration solidifies it, giving shape to tangible healing in a way plurals can safely lean into or hold onto as a resting place without the anxiety or big feelings regarding what happens to whom with fusion or integration. Much like how spending more time focused on phase one increases safety so that the pleural has stability and capacity to do the later work in stage two, it seems that perhaps stage three should be moved to stage four for the same purpose. This gives more space for functional multiplicity as a stage three experience with the time to practice it, much like skills at stage one.
Speaker 1:It is a simple thing to add the phase to the clinical literature regarding the process of healing, yet has significant impact on improving quality of care experienced by plurals in treatment. Another ethical issue raised by plurals has to do with presenters attempting to aggregate and monetize online educational resources, which the plural community claims is an unethical appropriation. This mirrors abuse dynamics they feel when plurals have been doing this for years already in effort to disseminate information and resources. Organizations, however, appear to be more collaborative. As an example of this positive collaboration, in 2021, the ISSTD held its first DID awareness day webinar for plurals for free with three presenters speaking about plural resources, An Infinite Mind, Beauty After Breezes, and The Blue Knot Foundation, and moderated by this author for System Speak.
Speaker 1:Finally, the Plural Online community has a love hate relationship with the theory of structural dissociation. It is normalizing understand everyone is born with parts and to learn that trauma interferes with the normal integration as part of a development relieves some of the shame that plurals carry by default. But there is misattunement in structural dissociation's break from the traditional view of multiplicity and its divisive approach. More so, many who support and utilize the good aspects of structural dissociation's model do not recognize this is part of what has happened, causing unspoken rupture in relationship between therapist and plural who is not because no multiplicity. This one aspect of structural dissociation feels incongruent with lived experience.
Speaker 1:Finally, as to the question regarding people online who may be faking, malingering, or pretending maliciously or not, as well as others who may identify as plural but report no trauma history, there is valid concern on two counts. One is that reports of plurality without traumagenic origin could undermine the most recent research that defends DID as a trauma based disorder against those who have dismissed it for far too long despite so much research and evidence already. However, even within the plural community, plurality is a broader concept than DID, and that is understood by plurals who claim no trauma history. Furthermore, the research confirming DID is a trauma based disorder is doing just that, confirming DID, the disorder, not plurality, the identity. Ranger's research demonstrating diagnostic capability with fMRI differentiates already between DID and personality disorders, as well as DID and malingering, as do the common assessments available for dissociative disorders.
Speaker 1:As to who identify as plural but report no trauma history, there are three clinical responses. One is that some of these are not yet aware of their own trauma history or may otherwise be explained by neonatal or epigenetic factors in a way the patient does not yet understand, but research is just discovering. A second is that the patient may be overlooking the impact of relational trauma, which we know is more damaging neurologically than even physical or sexual abuse. A third is that those for whom really have no trauma history, but still identify as plural, are not disordered because they are functioning and not distressed by their expressed identity. Any of these groups may be distressed by other things for which the clinician can offer treatment such as anxiety or depression or other stressors.
Speaker 1:Conclusion. Misattunement will always be a rupture in the therapeutic relationship, slowing down or even interfering with treatment. To hold traumatic reality and consciousness requires a social context that affirms and protects the victim and that joins the victim and witness in common alliance. Plurals need allies in treatment, not more stern parents. This is particularly salient in the treatment of patients with complex traumatic stress disorder because the injury for which they seek treatment is essentially an interpersonal one.
Speaker 1:In contrast, Michael Salter and Heather Hall wrote, dignity describes the felt experience of being valued while the innate human vulnerability to shame and injury is acknowledged and addressed. Dignified environments and processes are those in which both human value and human vulnerability are acknowledged and accommodated simultaneously, producing the experience of being recognized, understood, treated with safety, fairness, and accountability. Shame is the emotional correlate of attachment failure, child abuse, and neglect. However, it is also a socially located and politically structured experience that is exacerbated by public policy, professional practice, and government decision making. This applies even to goals for treatment, such as whether or not to choose fusion and integration or whether the new stage three of functional multiplicity is a better stepping stone for the client through the process of thinking something through to a conclusion while leaving the outcome or actual conclusion in the hands of the client.
Speaker 1:Part of future treatment will include dignity for plurals. This means the increased advocacy of plurals themselves, improved access to autonomy within the treatment room, and increased connection with others like themselves, all of which relational research says is healing and empowering. Playing an active role in their own recovery can be especially important for individuals with complex trauma histories because their symptoms can reduce individual autonomy and self direction. Maybe the question then is whether we can consider plurality as radical acceptance in the treatment process and not just because of it. To accept is not to be passively resigned or hopeless, but to be actively involved in understanding things as they are rather than as one wishes or demands they should be.
Speaker 1:This article and the references will be available on the blog.
Speaker 2:Responses from reviewers and editors and how we learned from that is in the next episode. 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. One of the ways we practice this is in community together.
Speaker 2: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. I'm there to heal too.
Speaker 2:That's what peer support is all about, being human together. So yeah, sometimes we'll see you there.