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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.
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 2:This is the dress rehearsal recording for system speak podcast. The plenary presentation that I will be giving two weeks from now at ISSTD. The plenary is called dignity and dissociating, dignity and treatment. I am not recording the ISSTD presentation. This is the dresser, so prerecorded before the conference happened.
Speaker 2:The links referenced in this podcast will be provided in the show notes. As we talk about dignity, I want to start with my own lived experience. I am a doctoral level clinician with twenty five years experience treating trauma. It is public knowledge that I have lived experience with DID and that I am the voice behind the System Speak podcast. I am a deaf person with cochlear implants, and this is my first conference to have a sign language interpreter provided for ISSTD, saving me spoons in both mental and receptive energy.
Speaker 2:I am an indigenous person for generations from having been removed from native land that was only returned to the civilized tribes by the US Congress in 2022. Using the term civilized is an example of binary thinking and microaggression. I am a shiny, happy survivor of religious trauma that makes it difficult for me to participate consistently in organizations, and I am only still here because of individual friendships and relationships with cultivated safety over time. In this article, when it talks about it's not my job to educate you, what that does not mean is that it's never appropriate to ask questions about culture, community, and identity. It also doesn't mean that people are never expected to do work to educate others about themselves.
Speaker 2:The key here is context. What are the roles and relationships of the people asking the questions and those expected to answer? I can educate you today because I'm being paid to, and so it is my job to educate you. You're an audience here to be educated. We together agree that this conference is a type of ongoing conversation professionally, and we together agree that we want to improve care.
Speaker 2:This makes us allies and collaborators. I understand that I am not obligated to tolerate trolling or other backlash for doing so. The other thing that I want to provide as context for this plenary presentation for the upcoming panel presentation that will be later that afternoon, and for the system speak community specifically, is the NASPA policy and practice series on safe spaces and brave spaces. The idea of brave spaces was first popularized by Brian and Christie in 02/2013 in chapter eight of their book, From Safe Spaces to Brave Spaces. The book was called the art of effective facilitation, reflections from social justice educators.
Speaker 2:Brave spaces references five key elements. Number one, controversy with civility, where varying opinions are accepted, but we are not harmful to each other. Number two, owning intentions and impacts in which, in this case, clinicians and researchers acknowledge and discuss instances where a dialogue has affected the emotional well-being of another person. Number three, challenge by choice, where marginalized people have an option to step in and out of challenging conversations. Number four, respect, where all people show respect for one another's basic personhood, not spreading hate or targeting individuals or organizations.
Speaker 2:Number five, no attacks, where we agree not to intentionally inflict harm on one another as individuals or organizations. The very beginning of our story of dissociation with lived experience goes all the way back to 1584 with Janine Ferri, the first woman to document her own multiple personalities. You can see the pictures and more of this history in the forum with the thread about the history of DID. Her symptoms correlated with the modern diagnosis. Multiple alters with names and identities, lists of their features, descriptors of their roles and ages and behaviors, different voices experienced in her own head, different voices when they spoke, different knowledges, capacities, and skill sets.
Speaker 2:This was also documenting dyadic trauma, meaning trauma between two people such as a parent and a child. When we talk about intergenerational trauma, we're talking about the cycle that continues from one generation to the next and where those dynamics of abuse become reenactments. So, for example, populations whose land has been stolen often have high rates of homelessness. Populations who have experienced genocide often then experience addiction. Families who have been divided in the past often end up with the next generation in foster care.
Speaker 2:These are not stereotypes that happen to all of these groups of people, but they are patterns that often get reenacted in the present, echoing the pain of memory time in the past. When we talk about collective trauma, it's trauma of collective groups. So, for example, disability groups. With the blind, they had to fight to be citizens. The Braille monitor in 1968 said, those of us who are blind are need, we say it once again, citizens as well.
Speaker 2:We wish to be treated as other citizens are treated for all ordinary and general purposes. We are still citizens was the message they were giving. The deaf community took this a step further. If we are citizens, then we have rights. As late as 1878 in Paris with the International Congress on the Education of the Deaf, there were no deaf people allowed to attend or testify, and they ruled against sign language being used in deaf schools.
Speaker 2:This was a policy that was not revoked until 02/2010. The mobility group added to this as well. If we are citizens and we have rights, we also want access. We are still fighting for proper accessibility access and bathrooms. Being able to even enter a building or have the space or equipment that you need to be able to do other activities that are normal for everyone else.
Speaker 2:Neurodiversity groups have built on this. If we are citizens with rights and access, we get to decide for ourselves what access looks like. People with autism who were stereotyped as having a lack of social skills managed to develop their own culture and support network. They pushed back against support organizations and the puzzle pieces, and they changed first person language to reclaim its culture as part of pride. Autistic person became person with autism, and now they have reclaimed that back again so that they can say, I am autistic.
Speaker 2:This pattern is following in the eating disorders community as well and in much of the dissociative community. Collective trauma was also experienced by the queer community, queer being a term reclaimed for LGBTQ groups. They've been targeted in history for experiments, euthanasia. Civil rights have been precarious at best. The HIV and AIDS crisis destroyed a whole generation, and the aggression and microaggressions from the heteronormative community has left the queer population often isolated from social connections.
Speaker 2:People refusing to use proper pronouns even though the singular of they has been in English since the thirteen hundreds. And there's also the impact of religion and politics. Oh, now it's safe to be queer, and now it's not safe, and now it is, and now it's not. Safety has come for some, sometimes, but not for all of us all of the time. These are historical trauma experiences.
Speaker 2:They're shared by communities, carried across generations, and inflicted on groups of people. The effects linger on for the descendants, and it results in cumulative trauma. Historical trauma is about what is still happening to us because of what has already happened to us. Examples of historical trauma include indigenous and Aboriginal peoples, the Transatlantic slave trade, colonization, forced migration, the Jewish holocaust, what is happening in Gaza, Japanese internment camps, immigrant labor, misogyny, microaggressions, the destruction of cultural practices, the loss of native languages, and for some, even being excluded from PTSD or other dissociative disorder criteria. Siegfried Sassoon, in a soldier's declaration in 1917, and writing about war trauma said, quote, I am a soldier convinced that I am acting on behalf of soldiers.
Speaker 2:I have seen and endured the sufferings of the troops, and I can no longer be a party to prolong these sufferings, unquote. We continue to see when there is war trauma, there is also almost always refugee trauma. People looking for political and physical safety with shelter needs and food insecurity, sanitation issues, the red tape of paperwork, waiting on boats and ports, children and families waiting at borders, tent city politics, job impossibility, language access, cultural traditions, religious celebrations, all of these impacted, even starvation while they wait for help. There's also disaster trauma, such as fires, earthquakes, or hurricanes. There's the physical safety, the need for shelter, consequential dangers, clothing and food, the interagency work, all of these add to people with lived experience of trauma.
Speaker 2:We had a collective and now historical trauma with the pandemic. No matter what your thoughts about COVID were or what the politics are for you, we all experienced 2020, and it was brutal. But out of that came a call from the National Institute for Health and Care Excellence in November 2020, where they said the patient voice of lived experience, patients who themselves experience symptoms are often dismissed or misdiagnosed with relapse or diagnosed with a new medical condition instead of being heard, and this is true with those of us who experience trauma and dissociation as well. In January of twenty twenty two, through the White House, the office of the assistant secretary for planning and evaluation released the official methods and emerging strategies to engage people with lived experience. As part of this, they talked about what lived experience is.
Speaker 2:They defined it as people with lived experience are those directly affected by social health, public health, and other issues and by strategies that aim to address those issues. When we say lived experience, we mean knowledge based on someone's perspective, personal identities, and history beyond their professional and educational experience. It's important to consider that perspectives on the same issue vary with a person's unique lived experience, but all perspectives are valid. All people have several intersecting identities, such as gender identity, ability, and race. Intersections of different identities lead to advantageous and disadvantageous experiences.
Speaker 2:People live their daily lives in the context of larger societal structures and systems. Even though we have personal agency and choice, they do not have control over the barriers or constraints that these structures and systems impose. In June 2023, the National Institute of Health issued standards for including lived experience. People with lived experience must be front and center in the creation and development of training and standards of care. People with lived experience must play a leading role in the design and application of trainings and standards of care.
Speaker 2:The development of peer support standards with state reciprocity is in the works as we speak. When we look at the history of diagnostic categories for mental health and specifically dissociative disorders, Since 2,000 BC, ancient Egypt characterized the syndrome known as hysteria as manifestation of multiple physical and behavioral dysfunctions. It wasn't until 1697 that doctor Thomas Sydenham declared hysteria an emotional condition, and it wasn't until Paul Birquette in 1859 pointed out that the physical symptoms were not medically explained. And then Charcot used hypnosis to treat them, including public demonstrations of doing so, which the lived experience community declares as exploitive. And then in 1951, as an attempt to replace the derogatory term of hysteria, they renamed hysteria Birkett Syndrome.
Speaker 2:And, also, in doing so, they maintained only 25 of the original 59 symptoms, which means that half of the lived experience report was literally deleted. In 1980, the DSM three ended the psychodynamic assumption of etiology as the process of distinguishing dissociation, conversion, and somatization. This shifted to measurable and quantifiable symptoms and symptom durations, separating diagnosis from theory for the first time. As part of this, Burkett Syndrome was renamed somatization disorder. And now instead of the 59 original lived experience symptoms, only 14 were required.
Speaker 2:This is also when dissociative disorders were promoted to their own category, including multiple personality disorders specifically, and depersonalization disorder was considered dissociative for the first time. In 1994, multiple personality disorder was changed to being called dissociative identity disorder. This set the stage for the confusion between models of multiplicity, multiple personalities and multiple consciousnesses, and models of divisibility, the division of consciousness, personality into only parts, leading to the development of the theory of structural dissociation of the personality. This, for the first time, put diagnoses together by category rather than by lived experience. This impacted trauma based disorders because what is presented in therapy depends on which perspective from whom internally, whether that is an apparently normal personality or an emotional or trauma based or memory time based personality.
Speaker 2:It also stopped seeing personalities as individual personalities and started seeing them as parts of personalities. That is one of the side effects of structural dissociation theory. This brings up the question of the original multiplicity model, where multiplicity is experienced as distinct from the dissociative continuum. So PTSD may have an ANP and an EP. Complex PTSD, distortive extreme stress, and borderline personality disorder may have an ANP with several EPs.
Speaker 2:But OSDD and DID or partial DID may have several different personalities, each of whom may have an a and p and or more than one a and p and several e p's. But the structuralist came along and defined the p, changed the p in a and p and e p from personality to part of the personality. They said no one is born integrated and that everyone is naturally divided into parts. Healthy attachment integrates the parts into one personality as a normal developmental process, and trauma disrupts that process. So the degree of disruption depends on timing and trauma in development.
Speaker 2:So what this does, though, is it basically takes away any experience of multiplicity. There's just one personality. So that PTSD looks the same with one personality that may have an ANP and an EP, but complex PTSD, borderline personality disorder, and OSDD only have one ANP with several EPs. And then DID is not actually multiple at all, but simply has several ANPs as as well as several EPs. This is not congruent with lived experience.
Speaker 2:John O'Neill, who is the author of The Brick or the foundational text about treating dissociation, suggests that that's not even possible because another AMP would be coming along before that many EPs were even collected. In discussing this with Kathy Steele on the podcast, she has changed her language to go back to talking about ego states. And further, since then, in 2021, Van der Hart published a new paper that changes the levels of dissociation to degrees of dissociation. He also acknowledged a broader understanding of disassociation, emphasizing multiplicity and division of actions being unique to DID. He also said that the terms ego states is not enough.
Speaker 2:He said, quote, dissociative parts of the personality may compromise any number of psycho biological states, which implies that labeling them ego states or self states is giving them too low degree of reality, end quote. In 2021, Salter and Hogg linked CPTSD to concepts of developmental and attachment trauma and associated disruptions in the child caregiver bond. In 2020, the research of Simone Reinders emphasized that DID is traumagenic in nature. This is not addressing other forms of plurality which have not been studied or researched. But DID is specifically in itself distinct from other disorders, And through the fMRI research studies, there is evidence of the neurobiological impact of relational trauma and that it is more damaging even than physical or sexual abuse, which we already know are bad.
Speaker 2:In 2021, her research continued and was able to identify biomarkers for DID, that DID is a valid, accurate, and actual diagnosis that can be proven through science. So when we take all of this and go back through the history of plurality, that dyadic trauma is about what happened between us in the past, such as caregiver and child, intergenerational trauma is about what is happening again, such as what is happening to me is what has happened to my parents, which is what happened to their parents. Collective trauma being it is about what happened to us together as a group, and historical trauma being about what is still happening to us because of what already happened to us, we can apply this to the lived experience community because dyadic trauma is the traumatic experience of the therapeutic treatment that is still evolving. Intergenerational trauma includes inadequate and incomplete treatment models being passed down or diagnostic manual changes that dismiss lived experience. Collective trauma is about what happened to us together.
Speaker 2:We have a shared history of exploitation, misdiagnosis, traumatic therapeutic experiences, and depression, not having a voice in choosing treatment, not being included in the development of treatment guidelines, not being heard in the treatment model application. Historical trauma is about what is still happening to us because what already happened to us. In research responding to the twenty twenty Black Lives Matters movement, clinical microaggressions that impact treatment were studied. Some of these included that the impact of ableism blocking self awareness of that malicious intent, the lack of cultural humility or fragility in uncovering it or an unwillingness to look at it, impacts as additional trauma for those with lived experience. When we talk about implicit bias in the clinical setting, this includes associations outside our conscious awareness that lead to a negative evaluation of a person on the basis of irrelevant characteristics, such as race or gender or diagnosis.
Speaker 2:The therapist must avoid assuming that he or she knows the correct answer in advance. The therapist's role is not to lead the client to a particular conclusion, but to walk the client step by step through the process. Writing about dignity, Salter and Hall added in 2021, 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. In 02/2019, I published the article, The online community, DID and Plurality.
Speaker 2:This provided the first plural literature review, both psychological and anthropological, and gave a history of plural identity and culture as well as plurality as a movement. It explained social media phenomena was not just with DID as it's also happening with other diagnoses. It also explained social media phenomena was something else. In the article, we identified religious or cultural dissociation as one category, with people dissociating unintentionally but aware of it. There's also the category of trauma response dissociation, where people are doing it unintentionally and not aware of it.
Speaker 2:There's also maladaptive daydreaming dissociation as another category where people are both intentional and aware. And then there's social media dissociation where people are aware they are doing it, but it may or may not be intentional. We identified the social media dissociation as something else, a new presentation of something different. Not a new or fake presentation of DID, just a different presentation than traditional DID. We encourage the ethical and compassionate care for everyone.
Speaker 2:This is not without clinical precedent. 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. Clients recognize that they have the opportunity to become active agents for change in their own behalf. Without this experiential foundation, the person is likely to experience instability in not knowing about personal preferences and values, depending instead on changes in the immediate environment and body states. Considering this, Judith Herman wrote regarding politics as mediator, quote, 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, end quote.
Speaker 2:These years of isolation from appropriate and effective treatment are a collective and historical trauma experienced by survivors that is reminiscent of the dyadic trauma dynamic. In a 2020 interview with Clought aired in 2021, we discussed that therapy in the past was a single point focused experience, the only outlet and only safe space for talking about dissociation. Now, however, therapy is only part of a diffused focus experience because the survivor also has access to published works, online resources, virtual support groups, YouTube and social media, blogs and podcasts, conferences, both professional and lived experience, and organizations and resources by survivors themselves. We can use the lens of disability justice to look at this. The author of Care Work, Dreaming Disability Justice says, disability justice centers sick and disabled people of color, queer, and trans disabled folks of color, and everyone who is marginalized in mainstream disability organizing.
Speaker 2:Disability Justice asserts that ableism, discrimination against and oppression of the disabled, is locked up tight with all systems of oppression. The idea that disabled people require fixing underpins ableism. The disability justice framework arose out of a critique of the disability rights movement for failing to examine the roles of oppression and identity in experiences of ableism. It advocates for leadership by those most affected. Again, the politics of the lived experience, the disability groups, the blind, we are still citizens, the deaf, if we are citizens then we have rights, the mobility group, if we have rights, we want access, and neurodiversity group, if we are citizens with rights and access, then we get to decide for ourselves what access looks like.
Speaker 2:And the queer community, with the impact of politics, community response, and grassroots support, when can I keep my rights and access? This leads us to nothing for us without us, which I have spoken about in previous presentations in detail. In this context, plurality becomes a form of radical acceptance. Radical acceptance acceptance and behavioral activation are primary mechanisms for changing trauma related patterns. Acceptance involves taking things as they are and not becoming so wrapped up in trying to fix problems or people that obvious solutions are overlooked.
Speaker 2:Plurality, generally, is an anthropological designation, not a clinical one. It's an overall umbrella term for those experiencing multiplicity. It was originally intended to be inclusive, people who are awaiting an accurate diagnosis, people without access to treatment, people with dissociation but not DID, people without privilege to pay for treatment, and other cultures and faith traditions that include dissociation but are not trauma based. It also includes a broad spectrum of internet platforms. Dissociative disorder support groups moved to Facebook after Yahoo groups, dissociation hashtags on Twitter or similar hashtags and meetups on Instagram, discussions on Reddit and Discord, private servers such as Chris Itterman's United Front peer support and group coaching or the Plural Association International Nonprofits with Dissociative Disorder Warm Line, YouTube channels presenting as people with DID, podcasts, and now TikTok.
Speaker 2:When we look at the community organization, there is research giving evidence that it counts as a movement and a community even if it is online. There's a general meaning making process that happens when social groups interact with each other, an emotion specifically which creates a new and binding understanding 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 conceptualizations of trauma, therapy, and the recovery process. When we did the Plural Positivity World Conference survey in 02/2019, '70 '2 percent identified as traditional DID patients, Fourteen percent were new plural presentation, but not necessarily DID or trauma based. So again, in the context of the 2020 political upheaval, politics played an early part in the plural community.
Speaker 2:Subgroups of the plural community included, among others, a high number of individuals with disabilities, individuals who are autistic, individuals of the queer community, and it was from these historical rights movements that the plural community formed its politics. They also adapted language from the political climate and protests in 2020. When Symone Rinders presented in 2020, she reminded the clinical community that 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. The shift from plurality to experiences of hospital admission. The shift from plurality to culture begs the question which becomes, who am I while I wait for correct treatment?
Speaker 2:Plurality provides a whole life encompassing identity with which one can identify and with which identify and with which ego states can agree regardless of the weight. In 2023, Bethany Brand had a new study about culture. In the dominant culture of psychology, a mental health discourse that centers decontextualized dissociation are themselves contextual. This involves sociological and psychological processes. Plurality is a cultural label that encompasses lived experiences of multiplicity, including those that plural people consider disordered, such as DID, or non disordered, such as having dissociated identities without considering themselves to be disordered.
Speaker 2:Online spaces for those who identify as plural represent a dynamic cultural space with roots in shared trauma and dissociation intersecting lived experiences. Individuals who dissociate also experience dissociation related stigma and treatment barriers, while additional barriers may compound these, such as racial, ethnic, or queer or other minority contexts. This shapes the way that clinicians build and enact cultural competency in both their case conceptualization and treatment of clients. Cultural competence with individuals who dissociate must include considering intersectionality and systemic oppression. This also explains other characteristics.
Speaker 2:Common plural experiences to have hundreds or thousands of alters overlaps with maladaptive daydreaming. These alters come with extensive back stories unrelated to the host. They're rich in vivid and highly detailed inner worlds. Many of these are developed further on apps, video games, or in computer sims. Altars have relationships with each other, even some having ceremonies and marrying each other.
Speaker 2:Some alters have pets or babies or jobs or friends or families in the inner world, and then those also become alters, including nonhuman alters. This has led to the development of the widespread use of fictives, such as alters from movies, video games, anime, or role playing games, and the newest are factives based on people in real life. Plural culture generally views most treatment as oppressive at best and violating at worst. Cismed is used in reference to the clinical fragility of the treatment establishment. This views the clinical fragility as a lack of cultural humility, views a lack of cultural humility as unethical.
Speaker 2:It perceives treatment establishment to be primarily white and male and straight. It rejects structural dissociation theory because it denies multiplicity, because it is incongruent with lived experience, and because it classifies structural dissociation theory as ableist. It also perceives treatment goals to be forced rather than collaborative, and it perceives complicit silence and lack of institutional courage. When we look at the different experiences across the community, there can be community tension due to exclusion. Within the community, there is gatekeeping and exclusion over who exactly is plural.
Speaker 2:There's community tension over terminology. Traditional or traumagenic DID systems often use terms such as multiple survivor, traumagenic disordered, struggling with functioning, distressed or dysregulated by their condition with the goal of healing through therapy, and are being retraumatized by some plurals who are not traumatogenic. That being said, anthropological plurals often use words about being plural, natural, endogenic, not disordered, functioning just fine, comfortable as they are, and their goal is simply to have the right to exist as they are, and they are being traumatized by cis med. Thus, even in the tension of the community, there are shared experiences within the tension of differences. In February of twenty twenty two, Counseling Today included an article about peer support, Mad Pride, and disability justice.
Speaker 2:Mad pride came from a movement of psychiatric survivors of the nineteen sixties and nineteen seventies when they began to organize. The banner of mad pride was a term that united many social movements composed of current and former users of mental health services. The Mad Pride movement views mental distress as situated within social, political, and economic circumstances, including the oppressive structures of colonialism, white supremacy, patriarchy, and other implications. Understanding this falls in line with the ethical imperative in the ACA Code of Ethics for counselors to recognize historical and social prejudices in the misdiagnosis and pathologizing of certain individuals and groups. In contrast, peer support offers psychoeducation about functional multiplicity.
Speaker 2:They want to support those without access to treatment and those in long term treatment. They want to improve quality of life while waiting for treatment, while waiting for a DID specific therapist, and during a long course of treatment. It's also political to empower those who don't want treatment, to empower those who feel like they are done with treatment, and to reclaim their power from oppression, including helping clients be in charge of their own treatment. In 2022, there was discussion online amongst clinicians in response to my art and previous presentations. Mary Anne Kate shared that clinicians and researchers need to be attuned to presentations of dissociative disorders that we are not as familiar with, as well as accepting that there are a growing number of people presenting to clinicians who simply do not have the same diagnosis as before.
Speaker 2:She offered a metaphor about kinds of fabric, organic, synthetic, and a blend. To clarify for American English speakers, synthetic did not mean fake but referencing those who experience plurality that is not caused by trauma but is still entirely valid. Additionally, she shared that some people with DID are upset and angry about the portrayal of life with DID in social media, feeling that these were trivializing, glamorizing, or even poking fun. Some found these deeply confronting when they had worked for years to come to term with their diagnosis, trying to understand and accept their own system, and to find the strength to carry on despite feeling chronic suicidal ideation. Many portrayals on social media are so very different from the traditional lived experience of DID.
Speaker 2:Katie Keach responded, and I share with permission, that the greater context of how content creating works. There may be several takes for a video. There could be editing involved. There may be special tools and lighting. Sometimes littles or younger parts are involved, and social media presentation of culture is already foreign to non native or non frequent users but may seem perfectly acceptable and normal to those who are native users.
Speaker 2:In 2023, '1 of the first articles exploring dissociative identity on TikTok was released. It was the first article that talked about TikTok culture specifically and demonstrated that mental health content on the platform was incredibly prevalent and receives high levels of engagement. Most engagement is positive with commenters offering social support, personal narratives, and advice. In addition, they reported that social media sites are key places for individuals to explore and experiment with different identities, including identities connected to mental illness. It was relevant to DID specifically escapism and maladaptive daydreaming, and this increased during COVID-nineteen.
Speaker 2:The results of this study included many people mentioned if they had received an official diagnosis for their providers. This appears to authenticate the realness of users' DID experiences. This may also preemptively ward off critiques. Forty four of the users highlighted the legitimacy of their DID related identities, and a smaller number of users reported being undiagnosed or awaiting diagnosis. This part of TikTok culture may have come into play with the social media controversy online last year that when they felt or appeared to be invalidated, it actually left them at risk culturally and in danger from trolls already trying to discredit them.
Speaker 2:Further, the study reported most content creators on TikTok were good about demonstrating boundaries. They listed in their profile if they were DNI for do not interact or minors or other age limits. 84 signatures included links to external websites, such as gaming sites, Discord, other apps, or payment sites, and how to interact appropriately. They offered tone indicators, trigger warnings, their pronouns, how to interact with alters, and welcoming specific intersecting groups, such as the queer community or neurodivergence. These factors of online social media culture with those with lived experience may be contributing to the increased demand for a dissociative disorder diagnosis.
Speaker 2:This matters because perceived or or actual safety online may add to the demand for therapists who will specifically diagnose dissociative disorders, and DNI boundaries isolating those without a formal diagnosis such as self diagnosis waiting for treatment, or without access. They literally do not have access to their own peer support without that formal diagnosis. Further results in this first article explaining Tic Tac culture included that, ideally, the validation around plural experience was that many users appear to seek out on TikTok should exist off social media as well in clinical spaces. Practitioners across fields should be able to sit with, assess, validate, and treat individuals who have complex experiences of dissociation using trauma informed methods. Assessment of DID and related disorders should include discussion of social media and its interactions with illness and identity and experience.
Speaker 2:Clinicians should be open to understanding the healing and coping potential of social media while also being attuned to social media's potential harms. A neutral example of this potential harm is in this article from The Washington Post where fake sign language is spreading on TikTok and deaf people are worried. It is very popular right now on TikTok and other social media to teach sign language. However, there are many users presenting these sign language lessons who are not actually native users and the signs they are teaching are incorrect. This leads to a watered down or trickle down effect where someone who learns from someone who learns from someone who learns from someone who learns, the signs became more and more muddied and more and more inaccurate until deaf people could no longer even recognize the signs, and it's impacting the actual use of our language.
Speaker 2:This can happen in other areas and other diagnoses as well, where people are attempting to do psychoeducation but may not have access to accurate facts or or actual cited sources. People should be wary of spreading misinformation or repeating information from sources that are not citing their resources properly. The psychoeducation on social media is only as beneficial as the information is accurate. In diagnosing plurality, there are clinical patterns noticed, observed, and reported for the plural presentation. They are primarily aged 18 to 25 with some fluctuation with high exposure to social media use.
Speaker 2:Those that age group is also aging. Native users growing up, probably now through age 30, lacking symptoms of disavow or unwantedness. They don't mind their dissociation. They're not distressed or bothered by it. They have little to no phobia, avoidance, or shame within internal psychodynamics.
Speaker 2:I want to say specifically here, we are not saying that people with DID should be ashamed of themselves. This is not about stigma. It is about the psychodynamic aspect of relational trauma being shame being part of how we were punished and shame being put on us. We do not mean that those of us with DID are ashamed of ourselves. Additional focus with plural presentation are lots of inner collaboration, communication, or even love.
Speaker 2:Rather than phobia, unawareness, or avoidance, parts seem to be created and operating for reasons unrelated to trauma or shame related avoidance. Usually, there's a fascination with parts in the inner world rather than a fear, avoidance, or shame about those inner experiences, and this fascinating inner experience is something dear to them. They have been shaped with their identity around it and seek validation in their communities and by a diagnosis, but they don't always actually meet criteria for the diagnosis. Peter Barish, who did that original attachment research and the original treatment guidelines, points out that the DSMTR criteria for DID as it stands includes three items. One, two or more distinct identities that recurrently take control over behavior, two, dissociative amnesia, and three, functional impairment or clinically significant distress related to these symptoms.
Speaker 2:There's also ample clinical and research evidence that pervasive trauma beginning in early childhood is an essential element of the ideology of DID. If any of those elements are absent in a client, that is not a DID diagnosis. Even if we are not denying their experience of multiplicity, it is something else, it is not DID. Stretching these criteria dilutes the point of diagnosis, which is to develop a treatment plan specifically for insurance benefits, not to develop an identity. Some cases of DID with native social media users may overlap.
Speaker 2:Social media in itself is a dissociogenic environment, but plurality is not a diagnosis. It is an identity and a movement. The evidence points to its reality, however, both experientially and culturally. Peter Barish again pointed out the lack of access to mental health professionals during the pandemic and referenced the documented increase in mental health crisis during quarantine. He noted that in the context of attachment, it is the norm during a crisis for all people to pull together, such as what happened here in The US after nine eleven.
Speaker 2:But the pandemic made us run from each other in fear of our lives. Our species' adaptive needs for attachment actually became dangerous. It makes sense that electronic media would be the lifeline for people who were forced in isolation at the time. Further, last year at the twenty twenty three annual ISSTD conference, Paul Dell presented about hypnotizability. He pointed out that it has been researched and documented significantly and repeatedly that about eighty five percent of the population has low hypnotizability, while fifteen percent of the population has high hypnotizability.
Speaker 2:Those with low hypnotizability are not likely to dissociate even if they experience trauma. However, fifteen percent of the population with high hypnotizability are more likely to dissociate generally whether or not they have trauma. We can place this on a graph, with the x axis going from separate not me experiences to blended me experiences and the y axis going from unaware of parts up to aware of parts. When we plot out the coordinates of being blended but unaware of parts, our words come out garbled. We are recognized as acting out of character.
Speaker 2:There may be emotional amnesia and feelings that conflict with the actual situation. We call that OSDD or it could be pre or early diagnosis of DID. When we have separate not me experiences and are unaware of our parts, we feel inner conflict without recognizing that the conflict is due to other parts. There's confusion over identity, wants, likes and dislikes. We might be unaware of amnesia.
Speaker 2:We call that DID or an early diagnosis before we've been through treatment. When we are more aware of our parts with more blendedness, we are noticing and owning our thoughts, our feelings, and our actions that belong to multiple parts. There is less amnesia. We call that an inclusive experience. Historically, it could have been called integration or fusion.
Speaker 2:With separate not me experiences, but being aware of our parts, that looks like co consciousness, being aware other parts want something, recognizing other inner voices, able to cross amnesia barriers through communication between self states. We call that functional multiplicity. When this becomes a lifestyle or over the period of time, whether or not someone is in treatment, we could call that plurality or the experience of functional multiplicity. I talked with John O'Neil about my slides and he added the z axis as well that ranges from emotional dysregulation to emotional regulation. So when we're looking at treating plurality, there's a difference between DID and plurality.
Speaker 2:DID is very covert, while plurality is overt. DID interferes with functioning, but with plurality, they are less bothered by it. With DID, we find it very distressing and more phobic of parts, but with plurality, they are less distressed and proud of themselves. With DID, there is limited internal relationships and limited awareness of internal worlds. With plurality, there's extensive internal communities with rich and extensive detailed inner worlds.
Speaker 2:There can be a blended approach in looking at this. Plural presentation is meaningful to the plural whether or not they have DID. We can safely explore it without needing to be disordered or pathological. We can honor the creative content or expressions that are important to them, such as fan fiction, cosplay, or complicated daydreaming. We can let them tell their stories using narratives or other art or movement therapies to bring healing through stories and expression.
Speaker 2:We can remember that some DID cases may mask their distress, phobia, or avoidance behind a more comfortable fantasy of being plural. Others may authentically stumble over explanations for their experiences because of exposure to social media. Others may find belonging, improved functioning, or support in the plural community. We can also respect when therapy is not even actually wanted by the client. O'Neil discusses this as a six stage sequence.
Speaker 2:First, ontology, what is really real, what a given human being essentially is from a structure or system point of view. For example, a singleton, a binary split, true DID with some amnesia for some switching, or plural, a singleton with subpersonalities or ego state disorder, or a true plural without amnesia. Two, etiology, how the structure originated, congenitally at birth, like right or left handedness, after birth, but as a voluntary choice, Paul Dell's current theory about auto hypnotic capability, and trauma or deficit in attachment. Three, ontogeny, how the structure evolves further trauma, deficit, or attachment disorder, or willful creative elaboration through everyday adaption, practice, or fictives. Epistemology, what is supposed to be assumed, believed, discovered, or known about the structure by the host, alters, and the clinician.
Speaker 2:This is how we clarify numbers one, two, and three. Five, teleology, the therapeutic goals of various system members and clinicians towards which one might aspire, keeping in mind that the extent to which any system member speaks for all system members is variable and something to continually wonder about. And then six, the actual ethics. Objectively speaking, there is likely a best outcome for the system, but no clinician nor a system member can be sure about what that may yet be. And, it may also be something to hope to progress towards, an aesthetic spectrum.
Speaker 2:At one end of the spectrum, for non traumagenic asymptomatic plurals, they are already there and if it works, don't fix it. Just let them be. At the other end, there's DID with multiplicity of ages, genders, function, degrees of traumatization and symptoms, and a miserable functioning in the real world and wanting help and support dealing with it. If we apply this to the Mad Pride recommendations, we can encounter such individuals in our practice and operate out of a place of respect for their choices while weighing other ethical and professional considerations. The ACA code of ethics states that counselors may refrain from making or reporting a diagnosis if they would believe it would cause harm to client or others.
Speaker 2:APA, the American Psychological Association, also discusses cultural pragmatism in search of alternative thinking about cultural competence and mental health. They said, quote, it is important for clinicians to develop skills that promote sensitivity to different beliefs so that they may provide culturally competent care. Clinicians can be correct in diagnosing, but wrong in cultural implications. In this case, we would consider clinicians and researchers to be in a place of privilege, with those diagnosed with a disorder or with lived experience as a marginalized group. Privilege refers to special rights or advantages granted to certain individuals or groups, yet it is often invisible to those who possess it, and it requires introspection and awareness to work through it.
Speaker 2:Marginalized groups are those who experience systemic disadvantages due to their social identity. It is visible due to societal discrimination and inclusion and limits access to help, while putting them in a place of higher vulnerability. It requires advocacy and recognition of system inequalities. Microaggressions are subtle everyday interactions that convey bias toward a marginalized group, are often disguised as compliments or innocent questions. Though some are meant to cause harm, many are unintentional.
Speaker 2:But targets or recipients with lived experience of such comments suffer psychological distress, including an increase in symptoms of depression, anxiety, and post traumatic stress disorder, and can face backlash if they speak up. Microaggressions can take several forms. Microassaults, explicit and intentional, such as ableist jokes or microinsults that are more subtle or covert, or microinvalidations, which may be unintentional but are still discrediting in ways that risk safety. Privileged people are often unaware of issues experienced by marginalized people. They may ask or behave insensitively without intending to or noticing that they have.
Speaker 2:There is an expectation that develops that is marginalized people's job to explain or defend themselves. The subtext is implied that marginalized people are odd, different, or unusual. This becomes microaggression against the marginalized people. This develops a pattern of fragility that privileged people don't understand what the big deal is. That adds to microaggression in that it dismisses distress of the marginalized people, and a lack of apology or change in behavior increases misattunement, leading to relational trauma.
Speaker 2:In January of twenty twenty two, the White House, through the Office of the Assistant Secretary for Planning and Evaluation, published the methods and emerging strategies to engage people with lived experience, as I mentioned earlier. As part of this, they discuss equitable engagement and inequitable engagement. So inequitable engagement fails to acknowledge historical racism and ableism and other systemic barriers that may have contributed to the community's Equitable engagement acknowledges historical racism and ableism and other systemic barriers that may have contributed to this and humanizes the engagement process and prioritizes meaningful engagement. It creates space for honest and safe dialogue. It respects the way in which people with lived experience choose to share their stories and input.
Speaker 2:Through this, we should expect awkward or uncomfortable conversations. This is common and necessary for building relationships. Another example of inequitable engagement is excluding members of communities affected by systemic injustice and overrepresenting people from dominant culture. As part of this, people with lived experience can become tokenized, giving them the appearance of including diverse perspectives when it does not or when engagement is not authentic. This assumes also that a single experience is universal or ask a single person to speak for a group rather than only for themselves.
Speaker 2:For example, on the panel about social media with lived experience later today, I could speak for myself and what it's like to be the first podcast. I cannot speak to what it is like to be on social media with dissociation because I am, in fact, not on social media at all. In contrast, equitable engagement includes members of affected communities and focuses on experience of those most impacted, such as featuring authentic inclusion, sensitively soliciting, and truly valuing diverse perspectives. So, for example, think about who is missing from the decision making process. How have you included those affected by or impacted by the policy, programs, or processes of your organization?
Speaker 2:Another example of inequitable engagement is ignoring power dynamics between privileged and lived experience people, disregarding the diversity and composition of people with lived experience and privilege on boards and in organizations, and failing to seek meaningful input. Inequitable engagement also includes viewing people with lived experience as research subjects or program recipients rather than co creators and co leaders. This lacks accountability for staff and leaders on equity related goals. In contrast, equitable engagement acknowledges upfront the power dynamics between privileged and lived experience people and seeks to address them. It prioritizes diversity within the group of people of lived experience and the privileged people who lead discussions, meetings, or events.
Speaker 2:It provides realistic and meaningful opportunities to impact decisions. It engages with people with lived experience as critical partners in designing, implementing, and evaluating research, programs, and treatment goals. For example, it is important to share draft and final versions of products, guidelines, and other reports with people of lived experience to ensure they reflect their feedback and for their records. In 2023 in June, an article was published, This Prison Where I Cannot Heal, Interactions of Cultural Dissociation and Treatment Among Individuals Who Dissociate. In this article, Kruger implored researchers to consider using qualitative methodologies and interdisciplinary approaches as they may be better suited to investigating these nuanced relationships.
Speaker 2:Culture may be understood as shared values, beliefs, and practices represented by a group of people. However, defining and understanding culture within the study of trauma and dissociation is challenging. The existence of online spaces for individuals who dissociate suggests that there may be further dissociation specific cultural considerations. People who dissociate understand their lived experiences as culturally contextual. To understand the meaning making and lived experience of those who dissociate, future qualitative research should employ more in-depth empowering methodologies with individuals with lived experience.
Speaker 2:Understanding how people who dissociate conceptualize their co occurring dissociative and cultural experiences is important because it can shape the way that clinicians build and enact cultural competency in both their case conceptualization and treatment of clients. Further, in 2021, NAMI published about the transdiagnostic dimensional approach, stating that, emerging research is finding that understanding mental illness could be more accurate. The transdiagnostic dimensional approach thinks about mental illness as an extreme and stressful version of common experiences rather than as categories of distinct experiences. By thinking about mental illness in this new way, we can better appreciate a person's experience and the effect of their symptoms on their lives. Ideally, this perspective will one day help guide our decisions around diagnosis and treatment.
Speaker 2:Indeed, positive effects of online communities for coping with stress, relationship building, and for enhancing feelings of belonging and shared experience among people experiencing mental illness, as well as other minority and marginalized groups, have been described. It is important to note that there have been a recognition of vast online neurodivergent ecosystem in which classical mental illness symptoms and diagnoses are viewed less as a mental health concern that require professional attention, but rather as consumer identities or character traits that make individuals sharper and more interesting than others around them. In this way, plurals also have a unique and distinct presentation. They have a right to exist. They They have a right to define meaning for themselves.
Speaker 2:They have a right to demand what treatment looks like for them. It doesn't have to be focused on curing multiplicity. They may need help with anxiety or depression. They may need support due to social stigma about being plural. They may need support fitting in a society which does not understand them or their identity expression.
Speaker 2:They may need interpersonal skill support with work or family situations due to personality traits. We can also be more sensitive in our use of language in sessions. We can use terms like functional multiplicity or plural or multiple or dissociative or person with depending on what the person wants to choose for themselves. Rather than saying something like earn secure attachment, we could say learned secure attachment. Rather than saying integration, we could use inclusion.
Speaker 2:And rather than trying to make altars be oriented to time and place by measuring them against walls and doorknobs, we could talk about attachment orientation, which is what the science says helps us be back in our frontal cortex, which helps us orient those things on our own rather than being dependent on the therapist to do so. In 2022, in my published article and in presentations with ISSTD, I pointed out that we need a four phase treatment model for multiplicity. I proposed that while there was no issue with the three phase treatment approach, that it was missing a phase of functional multiplicity where to practice being multiple in the world, but with the support of therapy prior to being on our own. In a 2023 podcast interview with Judith Herman, she also agreed an extended treatment from three phases to four in her most recent book and update, safety and connection, processing, reengaging with hope, imagination, and capacity, and the social justice of living in community with a lived experience voice. Treatment goals then, when clients were allowed to guide staff to what was important to them, quote, safety and a sense of security and connection, these being ones client regains or reclaims, rather than being reestablished, these need to be developed for the first time.
Speaker 2:This applies even to goals for treatment, such as whether to choose integration or not. This is particularly salient in the treatment of patients with complex stress disorders because the injury for which they seek treatment is essentially an interpersonal one. While the important role of the therapist is relating to each of the patient's multiple aspects of self while holding an image of the patient as a continuous whole, ultimately, the role of the therapist is to guide 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. Any kind of inclusion is a process. It is developmental over time and experienced.
Speaker 2:It is not something that is done, a point in time, or checked off. It is not something that is done, a point in time, or checked off. Emphasizing integration as a treatment goal implies it is a choice of behavioral compliance, which is both ableism and gaslighting, as well as often triggering due to the social contract with the family of origin. It is ableism because those with normal development and attachment are expecting those without normal development and attachment to act like it. It is gaslighting because it makes survivors feel less than and unwell for not doing what they literally cannot do.
Speaker 2:That's the pull of plurality. I can practice inclusion right now already, and no one else can exclude me from it because I get to decide for myself what improved functioning looks like. The treatment goal is never to get rid of parts or make them disappear, but to increase awareness and cooperation within the system as a group. Even for those with traumagenic DID, it seems mistaken to assume that a digestion and blending of different versions of self is preferable to the capacity to contain shifting and conflictual versions of self. It's an example of holding both.
Speaker 2:This then seems so especially irrelevant, even oppressive, to plurals who have already chosen to be multiple. Clinicians may find it more helpful to support work towards a relational bridge over which different parts of the self come to learn of each other's existence, history, and functions. For example, on a very good day, I may be feeling more blended and aware of my parts. But on most days, I am feeling more separate even if I am aware of part. And when I am very stressed or emotionally dysregulated, I may be less aware of parts and feeling more separate.
Speaker 2:On a particularly hard day, I may be even less aware than that. In a place of trauma or memory time, I may be feeling very separate and unaware. Whereas, maybe in therapy, I may be aware of feeling very separate, but also very aware of who's there or what we're working on. That's in contrast to all of these different experiences, but I am still me, all of which are ultimately a part of the experience of DID and plurality. It was Putnam who described how internal dividedness leads to a life of of chaos and stated that personalities or aspects of self must learn to communicate and cooperate.
Speaker 2:Quoting David Kahl, he said, it seems to me that after treatment of DID, you want to end up with a functional unit, be it a corporation, a partnership, or a one owner business. I am a soldier, convinced that I am acting on behalf of other soldiers. I have seen and endured the sufferings of the troops, and I can no longer be a party to prolong these sufferings. These plurals refused to be forgotten. Moreover, they refused to be stigmatized.
Speaker 2:They insisted upon the rightness and the dignity of their distress. Thank you.
Speaker 1: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.systemspeakcommunity.com. We'll see you there.