This is an archive.
Please visit the updated workshop page at
http://norasamaran.com/2016/03/30/out-of-the-attic-dissociative-disorders-and-social-justice/

 

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Out of the Attic: dissociative disorders and social justice

This is a workshop created over two years from information gathered as I was learning about my own experiences and integrating. A sandbox version of this workshop was offered in Vancouver in the Spring of 2015 with organizers and friends I have known for years, and it was very successful. A second run in Montreal with a more public audience is now in discussion. Each sandbox version of the workshop leads to adaptations and new knowledge coming from the participants. It is never intended to be ‘complete’ as this learning is based in the expertise of the many different people who come to and use this tool, and share their wisdom and experiences for future workshop participants to use.

Supplies

Agreements and Foundations

Part One: information and questions

What is Dissociative Disorder?

How does it happen? Causes

How it works

What it feels like

Distinctions: Some useful facts about what Dissociative Disorders are not

The effects of stigma: what we don’t know can hurt us

Gifts

Magic question box

Things you can do (and not do) to support someone with a dissociative disorder

Part Two: Practice

Role plays! (a.k.a. omg are we really doing this? Yes!)

Out of the Sandbox, into the ocean

Take home handouts: 1. symptoms, 2. how you can help

Please feel free to join the Dissociative Disorders Knowledge Sharing group

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Supplies:

Two shoeboxes with holes cut in them (question box, ‘easy’ and ‘hard’ boxes, feedback box)
nametags, markers
printed copies of the whole workshop and of the handout on symptoms and how to help and not harm
big sheet of ground rules for wall
paper and pens
food, drinks, snacks
Printout of workshop plan for facilitators

 

Agreements/Radical Mental Health/Foundations

Ground rules (borrowed from AORTA ground rules)

Welcome and Introductions, get food, settle in, make nametag
acknowledgment of territory

  • Go around: Name (group repeats back), pronouns, one-word weather report introduction
    • what do you need to be able to participate fully? Take care of your needs, lie down, walk around, eat, drink, washroom, step out if you need to, (childcare, bus tix, accessibility info, point out designated listeners/support people)
  • Step up, step up

Assumptions:

  • Oppression exists.
  • We all have experienced being targets and agents of oppression.
  • It is not useful to argue about a hierarchy of oppressions
  • All forms of oppression are interconnected
  • Confronting oppression will benefit everyone
  • Placing blame helps no one, taking responsibility helps everyone
  • Confronting social injustice is painful and joyful

 

Point to childcare, bus tix, accessibility info such as the washroom door size and stairs, designated listeners, separate rest/listening area.

Foundational assumptions:

This workshop adopts some basic assumptions and if you choose to be here you are agreeing to these basic foundations.

One is a radical mental health analysis, based on the work of The Icarus Project: we each make decisions about our own bodies. (whether you choose to use or not use diagnoses, psychological language, pharmaceuticals, whatever your approach to religion/spirituality/creator/soul/god/atheism etc., whatever you find are useful or not useful for you, all approaches are welcome. We will each find different tools useful and not useful for us, and the inner experience can be so complex and particular.)

Strengths and limits of DSM and biomedical model. Diagnosis can be useful and empowering if it lets you see that what is happening to you is not your fault and can let some people access resources. But the biomedical model views everything as happening ‘in the brain.’ It has limits: it can be pathologizing of what is actually part of the human range of experience, for instance. It can individualize what is actually inherently relational. It can separate out and categorize what is actually experienced all together and overlapping, which is particularly resonant when thinking about trauma and dissociative disorders. It also doesn’t take into account the ways people may experience dissociative disorders as fractures in their soul or spirit. (Interested in collaborating to provide more about all the different ways this is understood for people)

Another foundational assumption we are operating with is that structural power exists. We’re not going to get into debates over whether racism, colonization, sexism, heteronormativity, etc. exist. If you don’t see it, go teach yourself, that isn’t what we’re here for today, or we’ll never get to the point of the conversation.

Keeping power in mind, when you’re listening to each other, one tool I’ve learned is to take the time to Hear Think Feel Express. Sometimes we listen but don’t really hear each other – so if you slow down the steps, first you hear the person’s words, but you may not really understand what they mean, so take the time to Think or understand, and then take the time to resonate emotionally with what they’ve said, or Feel, and after that express yourself in response.

I want to ask everyone here to treat each other and yourself with the kindness and compassion that to me is the foundation for this work. To get us into the mood we’re going to do a five minute solo exercise (thank you to adrienne maree brown for sharing this exercise) .

Short exercise:

3:15-3:25
Find your own place in the yard or on the deck or in the study and we’re going to each have five minutes alone. Please do a body scan, notice any places you feel discomfort in your body, and just send love and compassion to those places. Focus on filling your body with your breath, feel love for yourself and for others. Please take this quiet time to soothe your body and be ready to offer kindness and compassion to yourself and to others when you come back. (if you have a song, a prayer, or a practice of your own that you use that you find helpful, feel free to use it, don’t be shy to sing or make noise or move in whatever way your body wants to, or you can just watch the trees and send love and compassion to yourself and others).

3:20-3:25 when I say go, you’re going to take a deep breath, and then all together we’re going to make a sound storm releasing that breath with a loud sound, any sound that comes out of you. Imagine releasing stored up tension, stress, grief, sadness, fear, and letting it out of you as loud as you like, releasing it. Then take another breath in and imagine breathing in love, compassion for yourself and all living beings. We’ll do three big breaths and then gather together.

Grounding in experience
3:30 Want to situate it coming from me. As someone with various kinds of privilege (white skin privilege, employment, language fluency, citizenship) but also with a hidden history of poverty and patriarchal violence, I’m feeling like me taking a risk to speak publically about dissociative disorders might be a little safer for me than it might be for others who are fighting other or multiple battles.

It’s still very very scary to speak about these experiences, for two reasons: one, stigma. Dissociative Disorders are so rarely spoken about, and so little is still known about them, that there is almost no way to talk about them. For instance when I was doing the research for this I checked statscan and they have numbers for schitzophrenia, bipolar, depression, anxiety, but dissociative disorders doesn’t appear anywhere in the statscan database. Friends doing counseling psych degrees say they have barely touched on it at all. From what I understand these experiences get talked about in relation to trauma and PTSD but I didn’t have access to spaces where anyone was talking about dissociative disorders at all so I had no way to understand what was happening to me until about two years ago when I stumbled on the terms CPTSD and dissociative disorder. And I also don’t feel like people really know what it means, and the few folks that I do know who have this diagnosis don’t really talk about it. And this is odd because dissociative disorders are the third most common form of psychological distress after anxiety and depression. Estimates are that between 1% and 10% of the population experiences some kind of dissociative disorder.

The particular difficulty thinking about them caused by the disorder itself probably adds to this silence, but the stigma honestly is more harmful than the disorder itself and makes creating safety much, much harder. Plus, stigma we can do something about, by making it easy to talk about and normalizing dissociative disorders, creating more general knowledge and fluency about them, so that the people struggling to put the parts of their spirit back together aren’t simultaneously trying to navigate stigma and social shaming on top of the internal structural shame that causes it in the first place. We can live in a world in which it is as easy to talk kindly and openly about being supportive towards someone while they have a dissociative experience as it is currently easy to talk about being quiet around someone while they have a headache.

At the same time the other reason it’s scary is that I’m afraid to get it wrong in a number of ways. Dissociative Disorders are a spectrum and there is a wide, wide range of ways of thinking about and experiencing them, and what I know currently is limited to my own experience. As I’ve said, I come from a certain amount of violence but also from various kinds of privilege, and that means my perspective at the moment is going to be very limited. I’m hoping that I can struggle through that process, by starting with what I do know, being honest about the limits of my perspective, and hopefully growing in relationship with others as I and we learn together. So my hope is that this early version of this workshop will completely transform as it enters into dialogue with other people’s experiences and knowledge. That process has begun and it is wonderful, I’m so thankful for what I have heard and learned from listening to people during and after these sessions.

The goal when I began this has been to create something that I can give away on the net for anyone to use and adapt any way they want. But that takes the risk of saying ‘hey there is a lot I don’t know, can we learn together’ and that’s a trust-building exercise that, I hope, happens over many conversations. It will never be done and it will never be ‘expert’ knowledge, and it isn’t meant to be. So doing this at all is meant to push me past silence and paralysis into a first step. It’s not meant to be ‘done’ or perfect. I’ve structured this session because we need some structure to have something to do, but I feel strongly that there are no edges to this learning, it will mean different things to different people, and I’m excited about seeing what emerges. So I decided to go ahead with it even though it’s not going to be ‘right’ or finished: As adrienne mb says, ‘no failures, only data’.

For instance, from conversations since writing this, I have learned that a lot of knowledge is coming out of Indigenous communities about the effects of trauma, and people may choose to talk about some experiences, that could maybe be thought of as ‘dissociative,’ as the effects of residential school or of trauma, or of the spirit not being safe in the body or being cracked, instead of using this language. Another perspective is also that it can be very difficult to tease out what is dissociative relative to just responses to trauma in general, and not everyone will feel the need to think of their experiences in terms of dissociative disorders, especially as trauma layers on trauma and can cause all sorts of effects. In a related vein, people have said that just existing as a Black person, particularly a dark-skinned Black person, in this white supremacist world means surviving the very conditions that foster CPTSD, and so dissociation may not be called that but may be just life, or people may use other language to describe similar or parallel experiences.

So thinking about dissociative disorders is just one tool, one that I personally have found empowering and helpful to help me recognize that this isn’t my fault, and even to bring together the experiences I was thinking of separately. But the term isn’t meant to be all encompassing or definitive and not everyone will want it; my hope is that people take what they want from this discussion and also share their own understandings, and so this is just the part of a long conversation.  For me personally, a request is to please assume I do want to know and do care to learn, and share whatever you think directly as much as you feel able. This resource is not meant to overwrite or erase or make a masternarrative of this one set of tools, but rather to offer parallel knowledge, like a river running alongside other rivers of understanding. I hope you will use it as one tool among many and share back whatever you feel would be useful for people who use this in the future – draw the rivers running alongside so others can find their path. There’ll also be a feedback box at the end for people to write anything that you would like to see included in future runs.

Something else I also want to say about coming from my own perspective is that I’m not any kind of counselor or psychologist, and I’m not equipped to heal people’s trauma histories. This workshop is meant as a peer resource, to offer public education to my community, to build relationships and knowledge, not as therapy. So it’s important to me that people govern their own level of depth. Something else worth noting is that I’ve heard from many people and have found as well that delving into the past for its own sake isn’t necessarily the best approach to healing, and that being well in the here and now is actually a path many people find best for them, integrating traumatic experiences at a pace that is safe and keeps them feeling strong and ok in the here and now. So if this session brings up trauma for you, whether or not you consider yourself having ‘a dissociative disorder’ please govern how much you feel safe and comfortable sharing, considering that these experiences can be overwhelming sometimes. I don’t want to go deeper than anyone feels they can handle, so while we can support and learn from one another about all of our healing paths and those of our friends, family, and communities, please do listen to and take care of yourself and don’t get in over your (or our) head.

Part One: Information and Questions

Ok: so caveats out of the way, I want to start with the Crazy Woman in the Attic. There’s an old book, Jane Eyre, and in it this man has a previous wife who is crazy and who you hear screaming from the attic. We know very little about her, except there she is, locked up in the attic, and crazy, as the story goes on. A book and then a film called Wide Sargasso Sea was made that tells the story of what might have happened before, and in it we see the man isolate and abuse the first wife, who becomes crazy as a result of this mistreatment, and who then gets locked away. The idea that crazy people should be put away and kept secret is one that I’m hoping to challenge. It’s been long work for myself to understand that I can and am allowed to be my whole self, at least in some spaces. So I’m curious what it would feel like for us to be all welcome as our whole selves, something one of my mentors, Proma, said to me when I was building the research for this workshop. What would it look like for us all to be welcome in the world as our whole selves? That’s the spirit this is being offered in.

 

Basics: WHAT IS DISSOCIATIVE DISORDER?

3:45
Neurological definition – Fundamentally, a dissociative disorder is characterized by keeping apart things that would typically be brought together in consciousness. Someone with a dissociative disorder is likely to experience aspects of awareness, thought, and consciousness as separate, or to have difficulty bringing them together or thinking of them together. Some people like to use the official diagnoses, but not everyone does. Just for reference, in DSM 4 the main diagnoses were:

Dissociative Identity Disorder (DID),
Dissociative Identity Disorder Not Otherwise Specified (DDNOS),
derealization,
depersonalization,
dissociative amnesia
dissociative fugue

in the DSM 5 they are now:
Dissociative Identity Disoder (DID),
Other Specified Dissociative Disorder (OSDD),
Unspecified Dissociative Disorder (UDD),
derealization/depersonalization
dissociative amnesia and dissociative fugue

But the words don’t really capture the experience, especially the enormous variety of inner experiences from person to person. I’ll just use ‘dissociative disorder’ to describe all of these experiences. However, dissociation is something everyone does, as I’ll explain in a bit. Dissociation is a spectrum, with ‘ordinary’ dissociation on one end, dissociative disorders in the middle and dissociative identity disorder on the other. More on this shortly.

Spiritual definition – the real healing for me has actually come not from the neurological understanding, but from approaching the cracks in my spirit and putting them back together, and learning how to be here, or stay here. I’m still doing that, with guidance from some people I’m working with who work at the spirit level. They talk about how you can sometimes not even come fully into your body at the moment of conception, if you don’t feel safe or if there is violence coming down one or both lines, or your parents are experiencing fear or violence. And they’re teaching me to recognize the difference between my nervous system and brain and body and my spirit or higher self, in order to heal the body by listening to the higher self. It’s hard for me to talk about because I had no way to understand these things until recently.

The truth is the best and fastest healing is happening by using all the tools at my disposal, including the biopsychosocial model and the spiritual models. Everyone will find their own path and their own understanding; I might move fluidly back and forth between these frameworks which have all been helpful to me.

First: What is Dissociation

Not all dissociation is ‘dissociative disorder.’ Dissociation is a normal part of the human experience and everyone does it. Dissociation is a spectrum, with typical dissociation on one end, dissociative disorders in the middle, and dissociative identity disorder (DID, what was formerly called MPD) on the other. (side note: I’m saying ‘typical’ not ‘normal,’; as per ‘rad mental health’ approach explained earlier, I’m not really interested in maintaining ideas about what is normal as those can reify false pretenses and forms of privilege taken for granted. If you’re hearing voices but you’re not in distress and you’re not causing anyone any harm, maybe there’s nothing wrong. However, if you’re in emotional distress and you wish not to be, that’s when you can use the tools available, including workshops such as this one).

Typical or ordinary dissociation is a common human experience: getting lost in a good book or film, daydreaming, creating art, forgetting where you put your keys, driving or cycling home on autopilot and not remembering how you got there are all typical instances of dissociation that everyone experiences. It just means not being here in your body in the here and now, the opposite of mindfulness. It’s part of the creative nature of human beings and a good thing.

When a young child experiences overwhelming terror and shame, usually in a situation in which the person or people causing the fear are also those the child depends on for safety, or if the caregivers are loving but are themselves experiencing overwhelming fear, there are several possible coping strategies for the child, one of which is structural dissociation.

Young children live in the imaginary world much of the time and do not yet distinguish real and imagined worlds, so they are well placed to respond to sustained trauma through creating structural dissociation: where a coping strategy is to decide the part of you experiencing overwhelming terror and shame is utterly unacceptable. You are too young to recognize or think that it may not be about you. An available solution when other strategies of protection or escape are not possible, when caregivers who you depend on for survival are the ones causing the harm, or are themselves experiencing overwhelming danger, is to ‘decide’ that the part of the self experiencing this overwhelming shame and terror is not-you. When this happens while the brain is still quite plastic, the neurochemical effects of shame and terror can literally wall off the neural networks involved in this overwhelming experience. They freeze in the state of trauma, and continue to operate in intense distress, but out of the consciousness of the child, who can then go on in the unbearable situation. The effects on awareness may create a fuzzy feeling, a sense of disorientation or unreality, etc. but the overwhelming distress can be partitioned off so the person can continue to handle the unsafe situation, stay with the caregiver or otherwise survive.

Recently, neuroimaging has added empirical data to the understanding of what is actually going on in the nervous system and brain of people who experience this structural dissociation; I do not have a psychiatric background, so my understanding is of a layperson, but a psychiatrist explained that the ‘lower’ levels of the brain (brainstem and limbic brain) can ‘shut down,’ reroute or circumvent executive function in the neocortex.

One theory is that our minds are already organized in associative neural nets that link together thoughts, smells, memories, physical sensations, proprioception, and emotion; the difference in dissociative disorders is that some of these neural nets can literally wall themselves off from the part of the mind that does “I” or unitary consciousness. We may all already be multiple, in some sense, but for most people, our networks or self-states are fluidly connecting in a way we don’t even notice, whereas for people further along the spectrum of dissociative disorders, some networks in the brain literally get isolated and cut off, along with some sensory bits of awareness that are part of these nets. These can include aspects of sensory experience (smell, taste, touch, proprioception) as well as thoughts, beliefs, emotions, associations, because the brain is structured in networks of linked association already. The neural nets may freeze at this stage of development (sensory input and all) and delink from the rest of cognitive functioning. This may be why people who begin to integrate previously ‘fragmented’ aspects of self find the ‘young’ fragments come along with full sensory memory of their bodies at that age.

Once it happens once, the brain becomes reorganized differently or primed to use dissociation as the go-to coping strategy, so further traumas that might not cause splitting in typical people may cause further splits for people with dissociative disorders. That is part of why you can have alters who are different ages and multiple self-states at the same age, or the sense of echoes or mirrors of alters.

However, the causes can be deeper and rooted in the spirit, not just the brain, and healing can entail accessing those spiritual levels of knowledge to put the spirit back together, call your spirit back into your body, heal cracks and ruptures, organize the self, and find a way to feel safe living in this world.  Some of us come into this world even from the moment of conception feeling we are not safe here, and resist fully entering the body even as it is being formed. Or we may enter the body but be fragmented, parts of the self ‘mixed up,’ disorganized and not coherent. Spirit and neurons are related and can be healed at the same time.

“Pop culture references to dissociative disorders are generally sensationalist and focus on the most dramatic elements of DID  – the ‘split personality’ idea, when really dissociative disorders are a much more nuanced and broad set of experiences to do with not being able to think of things together that most people can think of together.”

Pop culture references to dissociative disorders are generally sensationalist and focus on the most dramatic elements of DID  – the ‘split personality’ idea –  when really dissociative disorders are a much more nuanced and broad set of experiences to do with not being able to think of things together that most people can think of together. It’s like fractures in your spirit, or in neurological terms, like a partitioned hard drive, and can be about small things as well as big things. It’s just a spectrum of experience.

It is pretty important when understanding dissociative disorder to understand it is, and talk about it as, a normal part of human experience. There is nothing esoteric or rare or mystical about it. In fact, people with the disorder may already believe that parts of them are ‘subhuman’ or shamed out of deserving to be part of the circle of human bonds; it is important not to reify this distorted belief. We need to get as comfortable talking about dissociative disorders as we are about cramps or the flu. These disorders are the third most common form of psychological distress after depression and anxiety. And yet one of the symptoms of the disorder is that it is constituted through a layering of casting out parts of oneself, or of feeling absolutely convinced that the symptoms and the parts of self that are expressing normal human needs are shameful and must be hidden. This is not the fault of the person experiencing the disorder, and is to be expected – it is part of the structural dissociation. So there is a great, great difficulty talking about it, even for those who are otherwise quite open people who speak easily about emotions.

In other words, if you’re supporting someone with dissociative disorder you can speak of it routinely and in an ordinary way, the same way people speak of anxiety or indigestion. The experience of dissociation may be uncomfortable, but it doesn’t set us into a category apart and it’s a perfectly ordinary part of the human experience. Talking about it in an ordinary every day way makes people feel less like we have two heads (apologies to people with two heads!), which is especially important and supportive, because from the inside, shame has literally structured our experience of ourselves.

Where there have been better representations in recent years they tend to fall into the politics of respectability – Much as I love the show United States of Tara, which is about a nice normal white blond middle class woman with a husband and a suburban house who has DID – it does humanize the disorder somewhat compared to Sybil, the most famous story before Tara – it does so at the expense of the depth of who really is more likely to have dissociative disorders, which is typically people who experienced the most trauma and don’t have a big house and a VW bug to drive. The day we get a show or film that humanizes a queer Indigenous kid of residential school survivors who doesn’t need to have all these other markers of normalcy to be seen as human we’ll be making some real progress… so rather than seeking to widen the circle of social acceptability the goal is is to eradicate it, and love and see all human being as worthy of life.

Because that’s part of what a dissociative disorder does: the parts of you that experienced overwhelming terror and shame can actually come to believe they are not allowed to exist, they are shame-based, subhuman, monstrous, and need to go away. And of course that’s not true of any of us, and the irony is it’s usually very beautiful child parts that do that, and all children are beautiful and deserve to exist. It’s the situation they live through, where they are dependent for survival on someone who terrifies or rejects them, that leads them to believe they are shameful because if a child does not have a need met, they will decide they are not allowed to have that need, that they do not, in fact, have the need. And it takes a lot to undo that belief once it is laid down in the limbic brain as a ‘rule’ and marked in the spirit. (For more on how the limbic brain creates ‘rules’ out of what are actually just happenstance, see the fantastic book A General Theory of Love that has changed my thinking forever.)

Symptoms of dissociative disorders are foundationally the same as the symptoms of PTSD but become the baseline state of being over a long time, unlike regular PTSD after an isolated incident, which fades slowly after the incident. Structural dissociation has additional features that also are not as commonly found in regular PTSD. Long-term symptoms/experiences can include:

  • fogginess, difficulty thinking clearly
  • feeling not real (ex: looking at parts of your body with alienation like ‘whose arm is this’?)
  • limited awareness of body’s physical needs, hunger, sleep, food; strong ability to ‘tune out’ body
  • ability to ‘tune everything out’ and overfocus on one thing/idea/project for extended periods or with unusual focus, can act extremely competent in some situations and completely incapable in others. May be very high-functioning due to ability to mask and compartmentalize completely for years.
  • feeling like things or people around you are not real, or like familiar spaces/people/objects feel unfamiliar
  • objects around you appear far away, or appear to move close and far
  • feeling like you are very small inside yourself, or are underwater, unable to speak or struggling to ‘come up’ into speech (meanwhile, your mouth may be speaking but not words you feel ‘you’ are choosing, can be hard for others to tell the difference unless they pay attention)
  • feeling like you are watching yourself, like you are in a story, or watching yourself ‘from above’ (for me it is often up and to the left or up and to the right, people describe different sensations)
  • but you know these experiences are not ‘real’ in the sense that you know you are actually real, it just feels like you’re not (different from psychosis in that the person is aware it is just a feeling)
  • spinning or sense of direction inverted, up/down left/right inverting (polarities of the body inverting)
  • disorientation in space and/or time (not knowing where you are in time or space, sense of streets or rooms moving around, sliding around in time, not understanding duration even while staring at a clock). It takes much more effort and concentration than other people to get from point A to point B even when you have done it many times because hallways, doors, buildings, seem to rearrange.
  • more frequent instances of ‘losing keys’ phenomenon (especially when triggered), gaps in memory
  • feeling your body is a different shape or size than it actually is (ex: a ‘younger’ body sense)
  • finding evidence that you did things and do not remember doing them (new items acquired, emails in sent folder you don’t remember sending)
  • involuntary behavior (can look similar to compulsion or OCD symptoms, usually lacks the ideation)
  • losing executive control of your body/hands/speech, feeling you are only able to observe
  • gaps in memory or awareness/amnesia for parts of days, or for spans of time
  • feeling multiple, awareness of ‘alters/fragments/parts/self-states,’ co-consciousness (varies), chorus. Important to note there is no ‘original’ or ‘true’ self, all the parts are the person.
  • actually hearing ‘other’ you’s responding in your head or your mouth, can be younger parts of you
  • dream or waking pantheon of figures/self-states/dream figures (child states at different ages, capable protector, impotent protector, judge, internalized abuser figure, unicorn or magical self-state, etc.)
  • strong tendency towards retreat into fantasy; strong fantasy life; protection from scary or painful experiences/knowledge by buffering with fantasy, or some difficulty distinguishing fantasy from reality (but different from psychosis in some noted ways, not ‘I can fly/the aliens put the ideas in my mind’ but more like ‘this person is going to stay with me forever,’ or ‘this person is not actually dead,’ difficulty and slowness absorbing painful realities esp to do with abandonment or reminders of original overwhelm). May have difficulty perceiving physical reality, doing daily chores and tasks, managing space, because physical senses ‘buffered’ by involuntary fantasy strategy.
  • difficulty with or confusion over discerning appropriate levels of trust; may trust people too quickly in a childlike way, or trust the wrong people, or not really trust anyone at all and not know this experience is missing, simplistic black and white thinking about whether people are trustworthy. May take people very literally about verbal promises the way a young child would.
  • simultaneously knowing and not-knowing things (related to strong fantasy structure). i.e. you can know that someone you love has actually died, but simultaneously not-know it. Or you can know that a relationship has ended, while simultaneously not-knowing it. Being multiple = simultaneous multiple truths/capacities to absorb.
  • difficulty perceiving other people’s needs and feelings when in a triggered state
  • strong inexplicable emotions, abrupt childlike emotions, even if not aware of fragments in consciousness (abruptness of emotions rising up that make no sense or feel simpler in density)
  • self-harm (active like cutting, or passive like not sleeping, not eating, not noticing body)
  • feeling each relationship is ‘the only one’ and forgetting who you are in your other relationships, i.e. having a hard time remembering that you are simultaneously your mother’s daughter, your partner’s partner, your best friend’s friend, thinking of each as though it is the only one
  • having ‘parts/fragments/self-states’ that handle different situations/contexts – i.e. a part that handles driving, a part that does your job, a part that parents, etc.), finding it hard to think of yourself in multiple contexts simultaneously, sometimes behaving very differently in different contexts, more than typical (ie extreme shame or shyness or forgetting their strengths around certain people when person is also very outgoing and self-confident in other situations)
  • whichever ‘part’ is expected or associated with a given situation is likely to ‘come forward’ involuntarily when in that situation/with that person. Can be useful coping strategy as when you automatically ‘become’ your capable self at work when you were completely non-functional at home, or can be disruptive/scary/uncomfortable when you can’t prevent switching around certain people you would want to not-switch around (ie people who trigger associations or lessons from original abuser), or as the ‘walls’ between parts of cognition begin to break down as you age and previous coping strategies no longer work)
  • extreme feelings of shame or feeling some part of yourself is monstrous, unacceptable, abusive, subhuman, wanting to ‘cut off’ parts of yourself or ‘dissolve’ them or make them go away, denial of self-love for parts of yourself, difficulty even looking at this shame because it feels primordial and unquestionable, certainty that this part of the self must be hidden (even from oneself)
  • concurrent self-medicating or ‘checking-out’ strategies (addiction to substances, internet, sex)
  • seeking physical contact/reassurance, may end up in unsafe sexual situations when seeking care
  • concurrent physical issues caused by chronic elevated stress over time: respiratory infections,
    autoimmune disorders, inflammation and inflammation-related illnesses, sleep disorders, weight gain, tiredness, difficulty healing physically, allergies, adrenal fatigue
  • difficulty with self-regulation of nervous system (skipping developmental stages, needing lots of skin on skin contact or bodily pressure to feel ok, to sleep, to not feel physical discomfort, like an infant or young child would need. Skin on skin contact or full body pressure feels needed to regulate nervous system, may be experienced as a survival need)
  • suicidal ideation, depression and anxiety, caused by the trauma or by triggers, (different from depressive/anxiety disorders)
  • sleep disorders, night terrors, avoiding sleep, frequent wakings or disturbed sleep, may sleep best with safe trusted company
  • difficulty imagining trust, belonging, or safety, may not know how these feel but may not realize it
  • not making the connections between these different experiences, not putting the picture together, finding it hard to think about things together (ex a person may have nightmares, feeling of unreality, slippage in space and time, and a partial ‘pantheon’ of figures, but never put any of these things together or notice they may be related). Not noticing that the slippage or disconnecting is even happening. Awareness may be only of feeling a little ‘spacy’ sometimes but not of all the other sensations or experiences, not knowing it is possible to feel any other way.

 

How does it happen? Causes

The current scientific understanding of the causes of dissociative disorder is that it is caused by CPTSD/disorganized attachment, caused by sustained trauma before the age of (some say 3, some 5 or 7), in which safety or perceived survival depend on a continued good relationship with the person or people causing the harm. Learning about attachment theory can be very helpful for putting this cause into context, as DD is caused by high-betrayal trust trauma, or attachment trauma, and is deeply relational, not something just happening inside the person in an isolated way. It can also occur when caregivers are themselves in distress or overwhelmed.  It isn’t necessarily the fault of parents or caregivers, who may themselves have trauma histories or be experiencing distress.

“Dissociative Disorder is caused by high-betrayal trust trauma, or attachment trauma, and is deeply relational, not something just happening inside the person in an isolated way. Dissociative disorders are the internalization of structural violence, of oppression.”

It usually occurs early, before the age of 5-7 because during this time children are still living vividly in the imaginary world and have exceptionally plastic, flexible brains, and also may have limited access to other coping strategies or material support and can turn to dissociation as a defense mechanism when no other escape is possible. It can also be found where there is not abuse, but where parents or caregivers are themselves in distress, as in war times, genocide, extreme poverty, intergenerational trauma, etc. So having a dissociative disorder doesn’t necessarily mean that your caregivers were abusive, but can occur because they themselves are experiencing overwhelming powerlessness and distress, structural violence. Dissociative disorders are literally the internalizing of oppression.

Inasmuch as the ‘brain disorder’ paradigm is relevant – and I know even for so-called ‘brain diseases’ that is a contentious approach that has mixed value – even within the biomedical model, dissociative disorders are not genetic. You’re not born with them in the sense that you can be born with a family or genetic predisposition to schitzophrenia, depression, or autism. While dissociative strategies do run in families just as trauma does, there does not seem to be any kind of genetic predisposition, other than a tendency to be particularly imaginative.  (It may actually have a relationship to hypnosis in that you are acting without your own awareness, but what relationship is unclear, whether it is just an apparent similarity or is structurally related is not clear). In other words, dissociative disorders are always caused by structural violence, by oppression. They are one way the body and spirit internalize violence we experience. So to heal and change this, you do not stigmatize or blame the person experiencing it, anymore than you would blame the victim in a rape case or blame refugees for fleeing war. These things are structural and the most ethical way to respond to them is to help and support the person having these experiences to make these links, which they may be prevented by the disorder from fully doing.

“To heal this, you do not stigmatize or blame the person experiencing it, anymore than you would blame the victim in a rape case or blame refugees for fleeing war.”

Who is most likely to have them? Stats seem very hard to come by but more women have DD than men, and trauma survivors also tend to have higher incidences of DD, so while I could not find statistics and am still looking, I would be curious to know the impact and occurrence among Indigenous people, incest, rape, and domestic abuse survivors, residential school survivors, survivors of genocide and land theft and continuing colonization, people detained as children in migrant detention or whose parents are dealing with migrant detention system, children dependent on smugglers to cross borders – there were very limited stats on it from what I could find. In other words, Dissociative Disorders are most common among people who experience structural violence over the long term and starting from very young, even from the moment of conception or from family structures that predate conception. Intergenerational trauma can also be part of this picture because, for instance, the very moment of conception and the time leading up to it can shape how you enter your body in the first place and how safe it feels to do so.

 

How it works

With improvements in brain imagining new research is coming out that can actually observe empirically different activity in areas of the brain when people are switching and see how people’s brains differ from ‘typical’ brains for those with DD/DID. This has created new knowledge about what actually happens to people who have this kind of fragmentation. It is neurological as well as spiritual, from what I’ve been able to understand. Both approaches are useful. However, knowledge of what actually happens in the brain – overdevelopment of certain areas, underdevelopment of others such as those responsible for learning, for understanding time and cause-effect, for emotional regulation  – is creating more tools for recognizing that this is not the fault of the person experiencing the fragmentation, that they’re not faking it, that it’s very real. The research has grown a lot in the last five or ten years but still has a long way to go.

Internally, usually people are so accustomed to being fragmented that they don’t notice it is happening. Also, awareness of the dissociation is also one of the things ‘kept apart’ – awareness that you are dissociating is usually kept out of consciousness. This is a powerful protective mechanism and it is adaptive, usually as a response to prolongued trauma with no escape. I want to stress again here that it isn’t necessarily the fault of parents or caregivers, who may themselves have trauma histories or be experiencing distress. Dissociative Disorders do not necessarily mean your caregivers were abusive; it can occur when caregivers are themselves in distress or overwhelmed.

“Dissociative Disorders do not necessarily mean your caregivers were abusive; it can occur when caregivers are themselves in distress or overwhelmed.”

The risk in dissociative disorders is that the dissociation is involuntary and is situation-specific. So being a competent adult-self in a given situation may depend on continuing to associate that situation with that ‘part’. Once the walls between the parts start to break down, as does tend to happen with aging or after years of your body handling the chronic stress caused by the fragmentation, the inner world can become chaotic and confusing as previously walled-off aspects of awareness begin to intrude on consciousness.

For some further along the spectrum, these self-states, or alters, or parts (different people use different words) may feel quite distinct. The fundamental experience of separation of parts of awareness or consciousness is the underlying experience. People with dissociative disorders further along the spectrum or into DID can have varying degrees of ‘co-consciousness’ where the ‘parts’ are experienced like a chorus or a multitude of voices. Some may have less ‘co-consciousness’ where different aspects or parts of the self ‘move forward’ and take over executive function or ‘rise up’ and take turns acting as the primary self. Some people experience the ‘parts’ as having an internal location in inner space, and they may move as people integrate or as relationships between ‘parts’ become more coherent and consistent.

Because lower parts of the brain can circumvent the neocortex, sometimes ‘parts’ of a fragmented person can act independently without the conscious awareness of the person with the dissociative disorder, resulting in what looks (and is experienced as) involuntary behavior, what may appear similar to compulsions or OCD-like symptoms. This is sometimes one of the only symptoms the person may be aware of, and they may hide these symptoms for a long time due to the certainty that these symptoms (in fact, that the underlying ‘part’ and its very legitimate needs) are inherently shameful – even when that is patently untrue. Shame structures the limbic brain originally, in dissociative disorders, and so it can be quite convincing, even when from the outside it is evident there is nothing shameful in the person.

It’s important to note, however, that these involuntary behaviors differ from compulsions. They are involuntary, not compulsive. They are being carried out by a part of the self that the person does not have volitional access to neurologically, so the strategies for managing compulsions are not the same as the strategies for healing this kind of trauma. Involuntary actions of this sort are not typically accompanied with ideation, the way compulsions are (such as, ‘if I don’t tap three times a plane will hit the house’ – see more on this later in ‘distinctions’).

The psych literature uses the term DID where the ‘parts’ take on different names or where the person experiences what seem like two or more distinct personalities, and DD or OSDD where the parts appear less distinct. It’s all the same though, really: keeping apart things that typically you can think of together.

 

Examples: ‘what it feels like’

Feeling so different in different situations that you almost feel like you are different people, like you can’t remember who you are.

Hearing or feeling actual voices inside yourself that talk independently or feel emotions independently. You can feel ‘their’ emotion but the register is so different from your usual emotions that it feels like someone else. Sometimes they’re more childlike, simpler, bigger, or they rise up unexpectedly and then disappear again, and may be responding to things in the inner world (fantasy structures) rather than real things in the outer world.

Having a hard time remembering/understanding simultaneously that the ‘you’ who is your mother’s daughter is also the ‘you’ who is friends with your best friend, or partners with your partner. You may have all these relationships but only be able to think of yourself as in one at a time. That friend is ‘the only friend’ when you are with them.  When you are with them, your partner or best friends may each seem like “the only person you know or trust” in the world, when in reality you may have many safe trustworthy people in your life.

Feeling like your body isn’t real, or like objects or people around you aren’t real

Confusion in space and time, perception of the world ‘moving’ around you, doors and hallways appear to rearrange themselves regularly

Significant capacity to mask that any of this is happening

Buried sense of shame that feels impenetrable even when it is clearly not shameful

Having a hard time connecting, or not even thinking to connect, parts of your inner world or fantasy/dream world. Many people further along the dissociative disorder spectrum have waking or dreaming figures in their imaginary worlds that tend to form a ‘typical’ pantheon of figures:

child selves at different ages (such as multiple selves who are infants, 3 years old, 14 years old, etc.). this is not abstract, these ‘selves’ or parts can have actual physical sensations, sizes, associated with that age
the protector,
the judge,
there may be a magical or creative part of the self,
there often is an internalized figure of the original abuser, or a proximate symbolic figure (a scary angry man, an abusive adult from an institution, etc.) that resembles or represents the original perceived source of danger. This is also you, but it is a part of you that formed to try to prevent behavior that would originally have brought violence down on you when you were actually in the situation.
the defender/fighter parts (tough identities that can stick up for themselves)
these can be dream figures, or they can emerge as waking parts of the self, and they can have varying ‘locations’ in the inner world, and varying degrees of coconsciousness. They can sometimes take on the shape of different people with different names, histories, etc. but it’s important to remember that there is only one person in there and none of the ‘parts’ are full personalities. It is more like a fragmented or partitioned hard drive. It’s all one computer, but the consciousness gets separated into parts.

People with dissociative disorders may dream about, daydream about, or if they are creative types, even create fiction or films populated by these figures without putting them all together to see the pattern. Some parts may emerge in the waking, acting world, but even in milder cases there is usually a sort of inner world populated by this complexity of selves.

 

 

Distinctions: Some useful facts about what Dissociative Disorders are not

Dissociative Disorder symptoms are often not recognized or are misdiagnosed as other things. Even psychologists often know very little about dissociative disorders. For instance I had been told for years ‘you don’t have OCD, you don’t have depression, you don’t have generalized anxiety, so we don’t know why this is happening to you.’

Symptoms can resemble but are actually different from:

Bipolar – what looks like ‘quick changes’ in mood is actually multiple fragments all acting at once or moving ‘forward’ or ‘rising to the surface’ simultaneously or in turns, more like a chorus than like ‘rapid cycling of mood.’ From the outside it can be hard to tell the difference, but from the inside it feels very different from mood swings, more like a chorus of voices.

‘borderline’ – this catch-all term is highly controversial and very stigmatized, so I hesitate to even use it. A main distinction however between DD/DID and what people sometimes call ‘borderline’ is that in dissociative disorders the symptoms are not generalized across the person’s whole self. Certain distressed-states have these emotions (anger, difficulty perceiving and respecting boundaries, attachment issues or obsessing over attachment figures) while others do not. There is in DD usually an ‘apparently normal’ alter or self-state who does not appear symptomatic, is emotionally mature, has healthy boundaries, etc. while aspects of the whole self that have been ‘fragmented off’ (often the innocent parts that do genuine trust) are not noticed as missing by this part of the self. It’s important to note, however, that there is no ‘original’ self – all the fragments are the person. The ‘apparently normal self’ is just a self-state who developed on top of the younger or ‘emotional’ selves to cope with adult life. They are not ‘more real’ than any other part, but they may be who the person identifies as ‘themselves’ depending on how co-conscious the person is or how fragmented, or what their relationship is to integration, whether they are integrating or not, etc.

OCD/compulsion – the symptoms appear outwardly similar in that the person may do repeated things without choosing to and may be unable to voluntarily choose or will themselves to stop. However, this involuntary behaviour is an expression of attachment trauma and structural dissociation, not compulsion. In true compulsion there is ideation: ‘I must tap three times or a plane will hit the building.’ In dissociative disorders the behavior is just happening, and the person can’t stop it because they do not have executive access to the area of the brain that is acting. The lower levels of the brain can circumvent higher-order functioning and take over executive function when survival feels threatened (whether life is actually at risk or not: perception of the young child at the time of fragmentation is what matters). The person can no more ‘stop’ the action than they could ‘stop’ you from using your hands. Neurologically they simply do not have access, and it is important to understand this distinction. Because they do not have access to the source of executive functioning in these experiences, there isn’t the same kind of ideation or cause-effect emotions as in compulsion. Access must be regained before any further work can be done. There may be distress at watching the behavior, or the fragment who is carrying out the behavior may already be in a permanent state of extreme distress, but the experience is very different from the distress in compulsion because the cause-effect thoughts or sense of compulsivity is absent. There may not even be anxiety associated with the behavior, which is just happening while you watch, just as you would watch the actions of someone else’s body, not your own. Fighting it or trying to ‘just stop’ may make it worse, because the shame and distress level of the alter or fragmented self-state carrying out the actions may become more elevated, making the symptoms worse because they are addressing very real and legitimate unmet needs. Acceptance and compassion are the key to reintegration that allows the person experiencing these symptoms to regain executive control by reabsorbing the ‘fragment’ over time through loving acceptance, neurologically reintegrating the fragmented networks. The behavior is like an upset child trying to get a legitimate need met who does not believe they have the right to that need (for basic things like food, safety, trust, not to be abandoned by caregivers, etc.). If you’ve ever tried to tell a willful toddler they can’t have the hug they need when they are tired or scared, you’ll have some sense of just how strong this involuntary behaviour can be.

Depression or Anxiety – can be symptoms that are caused by trauma but are not in themselves the cause of the distress. Medication for these symptoms will not address the underlying disorder, which is not medicable, and sometimes medication can prevent accessing the emotions needed for integration.

Sleep disorders – are a symptom and heal by addressing the underlying fragmentation and trauma and rebuilding the nervous system.

The effects of stigma: what we don’t know can hurt us

Because it is so difficult to talk about for those experiencing it, because of sensationalist media representations, and because the neuroimaging technology that has let even professionals in the field understand structural dissociation is relatively new, this quite common human experience is still widely misunderstood and stigmatized. People with dissociative disorders already find it very difficult if not impossible to speak about their experiences, and reflexively use masking (both conscious and unconscious) to handle the fragmentation; when their symptoms can’t be hidden they may be shunned, shamed, or stigmatized, or may not get the support, compassion, and understanding they need.

The effects of stigma (loss of friends, social isolation, loss of work or shelter or social support) can be severe, especially where it retraumatizes the person by mimicking the original trauma. Stigma can be more harmful to the person with dissociative disorders than the disorder itself is when properly understood and supported.

The trickiest thing about supporting people with dissociative disorders is that overwhelming shame, fear, and ruptured trust are the original cause of the disorder, and the brain and spirit are literally structured by shame. The alters usually exist because they believe they are subhuman and not worthy of being part of a circle of humanity, of safety, of love and care and trust. That is the effect of experiencing overwhelming shame and fear at an age when you do not have the resources to understand why it is happening.

“You can create a safe culture for people with dissociative disorders.”

To heal, the alters need to be welcomed back into the fold of full humanity through compassionate acceptance that can begin to integrate the parts, neurochemically and spiritually. So when social ties repeat this shaming, shunning, or ostracizing, they literally retraumatize the person, reinjuring the same area that is causing the dissociation in the first place. You cannot shame a dissociated person into ‘acting normally’ – because dissociation is involuntary and is literally caused, structured, and driven by a primordial experience of being shamed and essential needs not being met (food, water, touch, reassurance, inclusion, love and acceptance, safety, attunement) which to a young child all feel like life or death needs.

It is an utterly misplaced sense of shame. Why would it be a young child’s failing if a parent neglects or doesn’t want them? Why would it be the child’s fault if the parents love them but are experiencing war, displacement, colonization, incarceration? Nonetheless since at a young age you can’t understand it isn’t about you, and because the limbic brain has a strategy of creating rules out of whatever is happening at the time the child is developing, the shame becomes a rock-solid distortion laid down deep in the limbic brain, in neurons, and in the spirit.

That structural shame is what drives the dissociation. So stigmatizing and ostracizing someone with a dissociative disorder – saying they must ‘just stop’ the dissociated behavior or you will stop speaking to them, for instance –  is particularly retraumatizing to someone struggling with this disorder and is very likely to make symptoms much worse rather than better.

Of course, that doesn’t mean setting healthy boundaries isn’t good – it always is – but healthy boundaries are not coercive, they don’t work via the threat to cut ties if the involuntary mental health issue can’t be resolved upon demand. Healthy boundaries look like: hey, this is my boundary, I need you to respect it, I care about you, see you tomorrow/at dinner. Since CPTSD is an attachment trauma, or a high-betrayal-trust trauma, developing healthy attachment not only for the person with the symptoms but for those around them who love them is a big part of how healing happens. The person does not only heal in isolation but by experiencing healthy attachment bonds with secure, loving, consistently supportive people. (See Hold Me Tight by Sue Johnson for more on developing healthy secure attachments.)

 

Gifts

People with dissociative disorders, when the system is holding together, can have gifts of unusual focus, and also of unusual creativity. They are often unusually creative to begin with, and they may also keep a very rich fantasy world into adulthood. They can often, when they are holding it together, especially when they are younger, put away all distractions and focus utterly on what they are doing for kind of ridiculous lengths of time. (my old housemate said ‘endless-attention-span’ was my middle name, and many people in my life have commented on what was once an ability to concentrate on just one thing for hours, days, weeks, ignoring hunger, sleep, etc.). However, when the system is not holding together as well – as people begin to age, or as further stresses and traumas wear on the body – that intense focus can begin to break down, and intrusive thoughts and experiences can begin to mix in to the previously ‘walled off’ parts of the personality.

Because dissociative disorders come from attachment trauma, people with DD and disorganized or anxious attachment may have an uncanny ability to read subtleties in people and social situations, caused by the need to properly read unpredictable caregivers as children. People with DD thus have the gifts of highly sensitive attachment systems. They may be intuitive, and like many trauma survivors, they can be very, very ethical, unwilling to cause or witness harm to others because they know instinctively how it feels to be the subject of harm or neglect. They are often highly attuned to the suffering of ‘underdogs’ – abused animals, people in situations of violence or subjugation – and find it difficult to stop themselves from getting involved to stand up for justice because they grew up in a situation of injustice and are empathetic. Though their self-care skills may be lacking, they can, ironically, be very good caregivers, parents, partners, friends, especially if they get support and full loving acceptance to feel safe and work on managing and healing dissociative episodes and or beliefs of unworthiness. Like a wizard with a lot of power, someone with these kinds of gifts needs support, structure, safety, secure attachments, and training in how to use their gifts.

 

Questions!

Magic question box time

(take a short break, eat, etc. and have folks put questions in the box; answer any questions ppl write or ask in person). Remind ppl they don’t have to wait for breaks to move around, eat, lie down, etc.)

It’s important to normalize these experiences and cut some of the esoteric weirdness that shitty popular representations have woven up around them. So let’s get factual; ask whatever you want. I can only answer from my own experience and different people with dissociative disorders will have extremely varied inner experiences, but I’m happy to be the guinea pig and answer any questions about what it’s like for me.

 

Things you can do (and not do) to support someone with a dissociative disorder

Educate others and speak up. Actively educate yourself and others around you. Instead of leaving it to the person struggling with the disorder to educate others in the community, share this destigmatizing practice so it is not all up to them. If people respond with a stigmatizing or blaming reaction, you can point out “it isn’t their fault, they have a dissociative disorder caused by (name the violence), maybe you could be more accepting.” Make links clear to the abuse or violence that caused the dissociative disorder, and to the need for social inclusion in countering the effects of structural violence. Just as we are learning that people with depression aren’t to blame for what they are experiencing, and we can love and support them as they are without expecting them to “just snap out of it,” people with dissociative disorders cannot just “snap out of it.” It isn’t something they’re doing on purpose, and they may already be feeling quite a lot of deep shame about it. Add to that the fact that the experience of dissociation puts even very verbal people into a childlike, sometimes nonverbal state, or makes it very difficult for them to choose or even access speech, and expecting them to be able to act in the normal ways adults usually act or judging them for an inability to explain what is going on or ‘stop it’ is actually cruel. Don’t leave it up to the people experiencing the disorder to advocate for themselves at times when they may hardly even be able to speak; learn about the disorder and share this role of education. Blaming someone for involuntary dissociative actions is akin to blaming someone for limping when they have a hurt leg. You do not ostracize someone socially, you offer support in a nonjudgmental atmosphere, and work together to find healthy inclusive ways for everyone to feel good.

Don’t be a bystander; you can make the world safer for people with dissociative disorders by normalizing the fact that this disorder exists, is not their fault, and is actually quite common. The only reason people do not yet easily say things like “Oh, are you feeling a little dissociated today?” the way we might ask “How’s your cold?” is because we have not yet reached the level of broad social awareness that we need. As we have seen with other experiences, this can change and can change quickly, once people join in and change the discourse.

Stop ‘Atticking’: Include and honour, don’t shun or hide the person. Be conscious of the history of ‘the madwoman in the attic.’ Don’t try to hide the person away, or encourage masking or shame over the symptoms. When you encourage the person to hide you’re retraumatizing them by reinforcing the original shunning/shaming. Be aware in particular of how gendered this is, how much women are taught to not have needs, to not have concerns and harm seen. If their symptoms are embarrassing to you because they are not normative, how do you think it feels from inside them? Normalize instead of hiding. Act as an ally who can say ‘hey, you’re welcome with us as you are even when you are dissociating. Here is your seat at the table. You don’t have to pretend to be feeling ‘normal’. We get it, and we get you, and you’re welcome here just as you are.

But do not out people or share info you know that the person experiencing it has not agreed can be shared. Outing people can lose them friends, jobs, driver’s licenses, housing, and maybe even control over their bodies, because whatever ‘part’ is expected is more likely to arise for a dissociated person, so having people know of their alters makes it more likely that alters will step forward. This may not always be what the person wants; for most of us, keeping our adult selves ‘in front’ is crucial to how we hold our lives together.

Counter stigma. Get comfortable talking about and hearing about experiences that fall outside the ‘norm,’ including dissociative experiences. Get familiar with these experiences if you’re not already, so they become normal and easy to talk about. But do not expect someone with a dissociative disorder to be able to or feel safe explaining it or talking about it or even showing you what is going on inside them. The only places that feel really safe to have alters come up are very very private, intimate, utterly safe places with people who are not going anywhere and are totally accepting and stable in their support. Because dissociation is situational, telling people does make it more possible that we might dissociate around that person. When we can’t choose when and how the switching happens it can be very destructive. Imagine having parts of yourself that act without your conscious will – really take time to imagine that. How would you want people to respond to you? Make the fact that dissociative disorders exist a normal part of daily life, just something to accept about people, and see how people blossom at this social inclusion.

Remember that ‘distressed states’ are just a facet of their personality and that there is a whole person in there even at moments when they can’t remember themselves; focus on what you and others in your community like, trust, admire about them. Also remember that even the ‘emotional’ parts of them are good. Usually these are just scared traumatized children who have all the wonderful qualities that a sensitive child would have had, and they just need love acceptance and support like anyone else. If their actions make you upset, you can learn how to set healthy boundaries without creating walls or judgment or using anger and distancing to try to control them; coercion or threats of abandonment don’t work, and are retraumatizing. Instead, know your capacity to offer love and care and support, and stay within your own limits. Build and actively use a support net so that friendships do not get overly taxed, and step up and back appropriately. Take this opportunity to learn about yourself and increase your ability to be part of a community care net by increasing your awareness of your own limits and capacities in advance so you can offer predictable levels of support. Get good at communicating your needs and capacities in a mature way. Don’t blame the person or get angry at them for things that are out of their control; it is cruel and makes healing much harder. Mad mapping/wellness mapping and advance directives are useful tools for community care; use them. Work on your own attachment practices and styles so that you can be supportive.

Listen Deeply recognize the person may be having immense difficulty expressing what is happening to them or using language. They may say things that seem out of character, words tumbling out of control, or may struggle to speak at all. Listen carefully for the quiet reasonable part that may be trying to express what would return them to a feeling of safety. If you speak to this ‘part’ you may make it easier for this ‘part’ to come forward. Ask the person how this feels for them. Do they want you to talk with ‘fragments’ or just with the ‘apparently normal self’?

Believe in them and in their self-knowledge. Don’t try to ‘guess’ when someone with a dissociative disorder is or isn’t dissociating, or try to guess what that might feel like. Just ask them. You will not guess right because the way it feels varies from person to person and internally day by day even for the same person. Sometimes people may be severely dissociated and it will be obvious if you know what dissociation looks like for that person, and prior understandings, such as mad maps, can be very helpful, but sometimes normal life is going on and there is some background noise of dissociation happening at the same time. Dissociation does not mean ‘switching’ in some simplistic sense where you literally talk to different people, because even for those who have severe DID there are varying degrees of co-awareness between fragmented self-states. It is always all one person, just a person with fragmentation in their awareness.

Trust the person’s expertise about their own experiences and respect the safety agreements they ask for. Trying to guess when someone is or isn’t dissociated, countering what they say is going on, is demeaning and demoralizing. It is stressful and scary to have to ‘convince’ people that you are not dissociated when they think you are, or that you are dissociating when they think you are not. Having people not trust you on your own self-state adds extra layers of distress to the already complex and challenging process of learning to understand your own internal experience. It takes away yet more autonomy from people who already may be working overtime to maintain autonomy over their own body. Someone with a dissociative disorder may not always know when they are dissociating, especially when it is just partial or when they are so used to dissociating they don’t notice – but they can learn, and are usually working to get better at recognizing their own symptoms. They will always be better at recognizing it than you. So show the person you have faith in their knowledge of themselves – and actually have it – by simply asking them in an open, accepting, and listening way, whether they are dissociating and what would help, and letting them have space to figure out the answers. They are the best situated person to understand their own internal experience. Paternalistic responses are ill-informed and harmful. In addition, what we really need is to be loved and accepted as our whole selves as we are integrating. For many of us, the reality is there are not clear lines between when we ‘are’ and ‘aren’t’ dissociating – there is no ‘true’ personality, and our adult competent self is also an alter. So love us whole, accept us whole, and trust our expertise on ourselves, if you want to help.

Don’t diagnose people or tell them what they need. On that note: when we are already experiencing loss of agency and control over our bodies and potentially aspects of our lives and minds, being told what we feel and what to do in a paternalistic way rather than being listened to and supported is extra scary and disempowering. Also these experiences are extremely complex on the inside – oceans of cause and effect – so what you see on the outside may be very different from what the person is actually experiencing. Trust them and teach them to trust themselves, especially as this agency may have originally been denied them by the original situation that caused the fragmentation. The person themselves is best situated to figure out what they need, with your support and faith in them. It can be very very hard to come into speech from deep inside yourself to name what is happening and what will keep you safe: listen for that quiet voice trying to speak, and help. Be an advocate for the person.

Counter Gaslighting. If the person has internalized beliefs about shame or unworthiness due to abuse or violence they have experienced, or if they are being shamed or ostracized by the people who should be supporting them, or if they find it hard to think about events, help them see themselves and the situation more clearly. If someone has changed reality on them (common in trauma situations with complex PTSD) or made them feel something is their fault that is actually structural or external to them, help them see it. Work on being able to see it yourself, by recognizing structural violence and putting responsibility where it belongs.

Wait it out. Mark Twain famously said “If you don’t like the weather in New England, wait five minutes.” Someone who is switching, including subtly when there are no clear distinct ‘alters,’ may not remember that five minutes ago they were fine. Once they feel fine, they may not remember why they were so upset. Be the bridge: when they are in distress, remember for them that this is not their whole self. Give them time and patience and remember who they are, until they come back to themselves.

We’re not trained monkeys. While it’s important to be able to speak easily about this common human experience, do not exoticize or mystify it. It is actually very common, it isn’t actually that bizarre, and there is a perfectly ordinary human in there who is having these experiences. People may choose to share with you if you are trustworthy, but do not ask for people to ‘perform’ or ask to ‘meet’ alters. Do not ask ‘which you are you?’ People do have varying degrees of co-consciousness between parts, and how internally consistent they feel changes for any one person over time. The inner experience is generally much more complex than the idea of ‘many people inside one person’ would suggest. Remember this is all one person, just someone with a trauma history and fragmentation in their spirit. Talk to them the way you would anyone else, and respect their privacy.

Make and keep agreements about which parts you speak to; adapt agreements as needed over time. Find out whether (and when and how) your friend or lover or coworker finds it helpful for you to address alters or fragmented self-states. sometimes if you have a very trusting relationship, you can help by building trust with fragments, but this is a long-term responsibility, akin to the responsibility of parenting, and cannot be entered into lightly. Often you may help more by simply accepting that fragment-states exist, offering kindness and understanding, while agreeing to interact only with the ‘adult/apparently normal’ self-state, since addressing the adult part of your friend may let them be that part of themselves more easily and may protect the ‘younger’ fragment-states from reinjury or retraumatization. If you decide to start building trust with child-state fragments, you must stick around for the long haul or risk retraumatizing these parts that need trust to counter the shame that made them; keep that in mind in your decision-making about your capacities. Sometimes it is best to decide together that everyone agrees the fragment states are allowed to exist (there’s no shame in them and the symptoms are totally ok), but you’re choosing to talk to or interact with the regular adult part of your friend.

Understand that healing entails learning and change. Adapt with them as the person learns more about what helps. What was useful understanding a year ago may have changed as the person moves along their healing path. Do your own research and reading and offer them tools and resources so they do not always have to lead. Get good at supportive, interdependent boundaries and at communication. Caring about and supporting someone in a non-stigmatizing way means growing with them as they grow, moving with them in the dance of relating. If you can do it in a noncoercive, nonpaternalistic, respectful and supportive way, then it helps if you actively make their healing your business.

Unconditional acceptance and kindness, along with formal structured support systems and ending stigma, are the best cure. Dissociative disorders are among the most treatable mental health issues, responding better to treatment than anxiety or depression.

Make mad maps. The best way to build collective safety and capacity for mutual care and support is to create mad maps, which let someone think ahead about how their community, family and friends can best help when they are in distress. People with high-betrayal-trust trauma may not understand or believe that they deserve emotional support, inclusion, or belonging, and so you can model this for them even if they do not understand how it feels to be included and to have their legitimate needs for safety recognized and met. Mad maps also give you clear info about who the primary support people are, so people do not get overwhelmed or feel in over their heads. This is important, because protecting relationships over the long term prevents retraumatization, shaming, and social isolation, and experiencing genuine trust encourages healing.

Build nets. To spread out the care and help the primary support people feel supported themselves, some people like to create a formal ‘net’ of support. Different friends may enjoy offering support in different ways. For instance, one person might like to be the one who checks if you’ve eaten and slept that day, but doesn’t want to do a lot of emotional processing, while another might love to listen to the minutia of emotional healing, but won’t want to cuddle you to sleep. Everyone can help in the ways they want to when you create a net of trusted friends. This is usually done in confidence.  The members of the net know who each other are, and have permission from the affected person to turn to each other for extra help and ideas. Nets also mean the person at the centre offers a gift to their community of fostering stronger relationships. The bonds formed and learning that arises through these nets is a gift the person with the dissociative disorder shares with their family and community, by strengthening the genuine bonds between people and helping people be more vulnerable with one another, building trust.

Share responsibility for creating a safe culture for people with dissociative disorders and with all ‘divergent’ mental health experiences. Speak up. When you are witness to someone stigmatizing people who have these experiences, whether in private or in groups, don’t silently go along. When someone you know engages in demeaning gossip, attacking, ostracizing, or shaming, of someone with these symptoms, try saying something simple like “You know x has a dissociative disorder. It isn’t their fault, it is caused by (name the structural violence) and they’re doing their best. Maybe you could have a little more understanding.” Just as we don’t leave it up to trans people to always have to be the ones to ask for pronouns to be respected, because it isn’t the job of the person who is stigmatized or facing ignorance to educate everyone – it is all of our responsibility – we can help reduce stigma and ignorance about dissociative disorders.

Many people have them and keep that info and symptoms masked. Currently it is not very safe to be out as having a dissociative disorder. Let’s change that. If someone you know has dissociative symptoms and is able to name what is happening to them in whatever way they understand it, do not shame or ostracize them; and if you hear people getting angry or being judgmental about these symptoms, speak up. You can say “it’s not their fault, and judging them isn’t right.” You can learn more about the disorder so that it appears less mystifying and esoteric and more ordinary, so that people struggling with these experiences don’t need to do so in secret but can learn that they are safe and accepted.

Give people the benefit of the doubt. Sometimes symptoms of the disorder can mask as personality traits; people may decide you are simply an unreliable or untrustworthy person if you appear to have sudden inexplicable changes in self-state or awareness. It is important to be able to simply ask, rather than assume. If the person is experiencing an involuntary change of consciousness or is unable to speak from their ‘adult’ or ‘ordinary’ self, or can’t concentrate or is suddenly foggy or not all there, work with them to help bring that part of them back out. Do not blame or get angry at child-states as that elevates tension and makes the situation much harder. Usually with a collaborative agreement and some basic safety agreements made – and kept – the person can get a handle on what is happening, and can take responsibility for their actions. While you can’t always know what is happening inside someone who does things you don’t like, in general giving each other the benefit of the doubt creates a more accepting, loving culture that makes everyone safer.

No, it’s not ‘an inner child’. Dissociative disorders are different from the idea of ‘an inner child’ and it is demeaning and disrespectful to insist they are ‘the same’. It’s a common question people ask, and it’s fine to wonder and ask, but the answer is ‘no, this is not the same as your inner child or childish emotions.’ These are related experiences but they are not the same. If you insist that it is you are not listening. Your ‘inner child’ may have a bad day but it does NOT take over executive control of your body, or make you black out and not remember later what you did, or speak in a literally separate voice, or move your mouth to answer your questions. These are real things that are happening in our brain and spirit – they are neurological structures within us and/or fractures in our spirit. Ask if you want, but when you hear the answer, don’t tell people you know what is happening inside them as it’s incredibly disempowering and disrespectful. Feel free to ask if someone feels comfortable talking about the difference, so that you can learn, but then listen and believe them when they tell you how their experience differs from yours.

Use a structural perspective. Actively make the connections – for yourself and for others – between violence a person has experienced in their formative years and the dissociative symptoms you may be witnessing now. Since this violence may be hidden, and/or may be old (though usually it springs back up again when exposure to traumatizing situations occurs, such as at family events or in similar contexts, so it may not be as ‘in the past’ as all that) help the person make the connections and see with adult eyes that what happened/s to them is NOT THEIR FAULT and not about them at all, not a measure of their worth or value as a human being or deserving of acceptance. If you are close to someone who has a dissociative disorder now because of patriarchal or racist violence that structured their psyche, talk about that with others around them instead of erasing it or individualizing the disorder. We do not exist in isolation, and the symptoms that show up in one person can be indications of normalized violence acted out by another. Think about relational responsibility, and learn how to develop healthy boundaries instead of cutting ties. This is how our politics is lived on the ground.

Don’t say ‘Just stop’ or get angry at the person experiencing dissociative symptoms, involuntary behavior, switching, etc. This is cruel because they can’t ‘just stop’ and threatening to stop speaking to them if they can’t stop an involuntary mental health issue will be likely to raise the level of distress of the alter, making it harder for the person to do what you’re asking rather than easier. Work together with the ‘adult’ or ‘reasonable’ part of them to help handle the distressed self-states together.

Say “this isn’t your fault,” and “there is no shame in what you’re experiencing,” and take the time to make the political connections to see why that is true. Act in ways that back up your words: include the person and stop others from shaming them. And do the long term work within yourself to increase your compassion and empathy for self and others. Compassion for self and compassion for others grow together and are related: the more you can offer care and love and acceptance to yourself the more you can offer acceptance and safety to one another, to create a fertile ground for healing. When we cannot love or accept or even fully see ourselves we have a harder time loving, accepting, and seeing others fully. Grow the good. 🙂

(this is the end of the first three-hour session, follow this by discussion, questions, go-arounds, people sharing their insights and understandings). If there is time for a second three-hour session..

 

Part Two:

Role plays! (a.k.a. omg are we really doing this? Yes!)

caveat: I feel very uncertain about these and am looking to gather more. DD is a tremendously varied experience from person to person and context to context. There are things missing that I wondered about including but felt unable to represent them well because they are far from my experience, and other things that may be so specific to me that they aren’t useful for a workshop. I really feel uncertain about these, and I’m interested to see how they go. Most are from my own experience, some are from research I’ve been doing or readings.

Also of course these are hard to frame because these same situations or experiences could be caused by other things. So for the purpose of today I wanted to see if it works if we assume that some form of dissociation is part of the picture, whether or not that is named explicitly. I’m interested in hearing feedback about how that feels, if it works, what else might work as an approach. So this feels very tentative and I thank you for sandboxing it with me.

There is an ‘easy’ and ‘hard’ box – you can pick which box you take from J

 

(easy box)
A friend confides in you that they are feeling like they are not sure they are real, that they feel their body is someone else’s, or feel like familiar objects and people around them seem unreal or suddenly unfamiliar. ‘whose life is this? whose body is this?’. They say they know it is just a feeling, that of course they and their surroundings are real. but the feeling is very real and causes them distress. They ask if you’ve ever felt things like that.

A good friend you have known for years sometimes seems disoriented in time or space. For instance one day they are supposed to come over. They’ve been to your house dozens of times. They are late and then they phone you and say ‘I’m so confused, I am standing in front of your house but it doesn’t look the way I remember, did you change the flowers?’ turns out they are on the next block over looking at a house in approximately the same place as yours but a block over. This seems so funny to you because they’ve been coming to your house for years.

Your partner, in their sleep, sometimes becomes distressed, opens their eyes, and starts screaming, running around, or sometimes throwing things out the window. One time you wake up to find the blankets are already halfway out the second-floor window with your partner furiously stuffing them the rest of the way. Another time they sit up yelling that ‘the big wall with spikes’ is going to crush you both and you have to run now. Their eyes are open and they are talking about their dream as if it is real and they seem to believe the window is the only way out of the room and that you both have to run before you get crushed (or spiked, or a bomb explodes under the bed, or glass falls on you from the ceiling, etc.) They soon wake up partway and say ‘it is just a dream but I am looking right at it’. This happens every few nights. You are concerned some day they and not just the blankets may actually go out the window, but so far so good. They don’t feel seriously concerned about this and don’t want to move the bed.

Your housemate, who you don’t know very well, frequently screams or runs around in their sleep, sometimes screaming bloody murder loud enough to wake up the whole house.

An acquaintance you met at a friend’s birthday dinner and spent a whole night talking to is then at the same demo as you the following week, and when you say hi, they seem not to remember you at all. You feel snubbed or like they just don’t think you’re important enough to say hi to. Now you’re in conversation with other people who are all discussing how this person must be a snob because sometimes they are really friendly and sometimes they act like they don’t know you at all.

Your coworker confides in you that they are experiencing upset child states and have recently learned they have a dissociative disorder, and they are afraid if anyone notices they have started ‘switching’ states of consciousness at work they may lose their job.

(hard box)

Someone you know suddenly behaves in a very different way than usual, and says they have a hard time ‘remembering’ how they normally feel, who their friends and family are, who they trust. They report abrupt changes back and forth depending on who they are interacting with, sometimes within seconds or minutes. One ‘state’ may seem happy, confident, calm, while the other may seem distressed, young or very emotionally needy, or express feelings of shame and lack of self-love or self-acceptance. They are experiencing immense distress.

Someone you have known a long time who is usually full of ideas and talkative now has long stretches (hours/days) of staring blankly into space. In a clearer moment they say they have been having constant compulsive symptoms for several weeks in secret, and they now spend many hours each day not moving or speaking, barely responsive.

You make plans with a friend of yours who is usually easygoing. You say you’ll do something specific, like talk on the phone at 3 pm on a certain day. That day comes and you are busy and forget. You call later that day for another reason, and suddenly your friend seem very distressed and repeats your words, in a childlike way, saying things like  ‘you said we would’ or ‘you said these words’. They seem unable to move on or let go of the words you used when you made the plan.

Someone you are dating or involved with romantically confides that they experience involuntary behaviour after romantic or sexual situations, and say they feel like they are watching themselves and cannot voluntarily access their body’s actions sometimes. Examples include compulsive emailing or phoning. They express profound shame over this part of themselves and say they wish they could just ‘cut it off and make it go away’. In person the behaviour may include simply the feeling they need to be near a specific person (sitting near them, seeking physical contact, perhaps in a childlike way) but in a way that is very different from how this person usually behaves. This person expresses shame, guilt, or self-recrimination and believes that part of themselves is ‘monstrous,’ ‘subhuman,’ or unnacceptable.

Someone you know has marks that suggest cutting, and they confide that they sometimes feel they are literally watching when self-harm is happening, not like they are doing it themselves but like their hands act independently and are not responsive to their will no matter how hard they try.

As you are ending a long term relationship, your partner who has usually been loving, self-aware and kind suddenly behaves in very erratic or out of character ways, more than can be accounted for just by the usual emotions of a breakup. For instance, they break up with you and say they believe it is the right thing to do, but then become extremely distraught and seem to act suddenly childlike, wordless, or say things about not wanting to lose you that they later do not remember clearly, or later say weren’t actually real. They seem to be in denial about the breakup, talking about how you will live together for the rest of your lives and have a home together, even though they say they are the one who thinks the relationship should end. They seem disconnected from reality and are able to answer your questions about the fantasy structure, though they have a hard time clearing it out of their thoughts.

A coworker who has confided in you that they have a dissociative disorder frequently seems to forget conversations you had or agreements you made. They may say they will do something, like return a borrowed item, and then not do it, and when you confront them they say ‘I genuinely thought that I had returned that, I have a vivid memory of bringing it back.” At times this can be very frustrating because they agree to things and then act as if the conversation never happened, or redo work in different ways than you agreed. They seem completely unaware that this is happening and you can’t help but wonder if they are just being manipulative or trying to control everything when they appear to go back on agreements without talking to you and act like nothing happened when you bring it up.

bystander (hard box)

Someone who you know has multiple forms of trauma appears to have some dissociative symptoms and gets fired from jobs repeatedly and then loses their home when they can’t pay rent, but they don’t have money to pay for treatment. Someone says to you “why don’t they just try harder to keep their jobs?”

A straight man you know tells you a story about how they hooked up with a woman who had said she has something weird happen to her after hookups sometimes. He says after they talked about it and he reassured her he would understand and it would be ok if her symptoms came up, they made out one night. The next day she phoned 85 times, and seemed in distress, but had nothing to say or said unrelated things, and said she wasn’t even sure why she was calling, that her hands seemed to be acting on their own. The guy telling you this story is very disparaging, says “she was so crazy, I stopped speaking to her.”

part 1/3 You are at dinner at a friend’s house, and a woman is there who you have heard through a close friend ‘is crazy.’ You’ve met her before and never noticed anything odd about her behavior but your friend has stopped speaking to her because she has behaved in ‘crazy’ ways towards him after they were briefly involved. At dinner she is quiet and polite but seems distracted and keeps leaving and going downstairs, and when she comes back it looks like she has been crying. When she is in the room she seems to act in a childlike way that is different from how you have seen her behave before. Everyone acts like nothing is wrong and then you all leave together, leaving her alone at the house because she is uncomfortable to be around.

2/3 Your roommate and good friend says they are having dissociative symptoms around a specific person who has stopped speaking to them after a brief romantic involvement. That person’s closest friends are all coming over for dinner and then everyone is going out to meet that person at a pub, except your roommate who is not invited. You want everything to feel smooth, so you ask nicely if your roommate can go to the basement if she feels symptomatic so no one will feel uncomfortable. During dinner she sometimes goes downstairs and cries and has compulsive symptoms, and sometimes comes upstairs and tries to act normal, but her mannerisms and voice seem more childlike than usual. When she is downstairs you go down and check on her when you can, and you tell her you are glad she does not name what is happening at the dinner table because it would make everyone uncomfortable. At the end of the dinner you leave and go to the pub, leaving your friend alone at the house because she is not welcome due to her dissociative symptoms.

3/3 You are at a dinner with some new friends in which one person you barely know keeps leaving to go to the basement and when she comes back she seems unhappy, distracted, and acts in a childlike and strangely insecure way. Everyone else acts like everything is normal. The tension is palpable but the people who know her aren’t saying anything so you’re not sure what to do. At the end of the dinner everyone goes out to the pub, and you are invited, and the person with the odd behavior is not invited so you leave her alone at the house.

(Add more of your own: what are other scenarios you have witnessed or experienced in which people were shamed or stigmatized or needed support and those around them perhaps did not know what to do?)

 

 

Out of the Sandbox, into the ocean

(where can this go next? Who might want to add/use/adapt it? What would you want to use/add/adapt? How can it be better and more useful?). What other role plays might be useful?

Handouts/takeaway:

Dissociative Disorders can include these experiences

  • fogginess, difficulty thinking clearly
  • feeling not real (ex: looking at parts of your body with alienation like ‘whose arm is this’?)
  • limited awareness of body’s physical needs, hunger, sleep, food; strong ability to ‘tune out’ body
  • ability to ‘tune everything out’ and overfocus on one thing/idea/project for extended periods or with unusual focus, can act extremely competent in some situations and completely incapable in others. May be very high-functioning due to ability to mask and compartmentalize completely for years.
  • feeling like things or people around you are not real, or like familiar spaces/people/objects feel unfamiliar
  • objects around you appear far away, or appear to move close and far
  • feeling like you are very small inside yourself, or are underwater, unable to speak or struggling to ‘come up’ into speech (meanwhile, your mouth may be speaking but not words you feel ‘you’ are choosing, can be hard for others to tell the difference unless they pay attention)
  • feeling like you are watching yourself, like you are in a story, or watching yourself ‘from above’ (for me it is often up and to the left or up and to the right, people describe different sensations)
  • but you know these experiences are not ‘real’ in the sense that you know you are actually real, it just feels like you’re not (different from psychosis in that the person is aware it is just a feeling)
  • spinning or sense of direction inverted, up/down left/right inverting (polarities of the body inverting)
  • disorientation in space and/or time (not knowing where you are in time or space, sense of streets or rooms moving around, sliding around in time, not understanding duration even while staring at a clock). It takes much more effort and concentration than other people to get from point A to point B even when you have done it many times because hallways, doors, buildings, seem to rearrange.
  • more frequent instances of ‘losing keys’ phenomenon (especially when triggered), gaps in memory
  • feeling your body is a different shape or size than it actually is (ex: a ‘younger’ body sense)
  • finding evidence that you did things and do not remember doing them (new items acquired, emails in sent folder you don’t remember sending)
  • involuntary behavior (can look similar to compulsion or OCD symptoms, usually lacks the ideation)
  • losing executive control of your body/hands/speech, feeling you are only able to observe
  • gaps in memory or awareness/amnesia for parts of days, or for spans of time
  • feeling multiple, awareness of ‘alters/fragments/parts/self-states,’ co-consciousness (varies), chorus. Important to note there is no ‘original’ or ‘true’ self, all the parts are the person.
  • actually hearing ‘other’ you’s responding in your head or your mouth, can be younger parts of you
  • dream or waking pantheon of figures/self-states/dream figures (child states at different ages, capable protector, impotent protector, judge, internalized abuser figure, unicorn or magical self-state, etc.)
  • strong tendency towards retreat into fantasy; strong fantasy life; protection from scary or painful experiences/knowledge by buffering with fantasy, or some difficulty distinguishing fantasy from reality (but different from psychosis in some noted ways, not ‘I can fly/the aliens put the ideas in my mind’ but more like ‘this person is going to stay with me forever,’ or ‘this person is not actually dead,’ difficulty and slowness absorbing painful realities esp to do with abandonment or reminders of original overwhelm). May have difficulty perceiving physical reality, doing daily chores and tasks, managing space, because physical senses ‘buffered’ by involuntary fantasy strategy.
  • difficulty with or confusion over discerning appropriate levels of trust; may trust people too quickly in a childlike way, or trust the wrong people, or not really trust anyone at all and not know this experience is missing, simplistic black and white thinking about whether people are trustworthy. May take people very literally about verbal promises the way a young child would.
  • simultaneously knowing and not-knowing things (related to strong fantasy structure). i.e. you can know that someone you love has actually died, but simultaneously not-know it. Or you can know that a relationship has ended, while simultaneously not-knowing it. Being multiple = simultaneous multiple truths/capacities to absorb.
  • difficulty perceiving other people’s needs and feelings when in a triggered state
  • strong inexplicable emotions, abrupt childlike emotions, even if not aware of fragments in consciousness (abruptness of emotions rising up that make no sense or feel simpler in density)
  • self-harm (active like cutting, or passive like not sleeping, not eating, not noticing body)
  • feeling each relationship is ‘the only one’ and forgetting who you are in your other relationships, i.e. having a hard time remembering that you are simultaneously your mother’s daughter, your partner’s partner, your best friend’s friend, thinking of each as though it is the only one
  • having ‘parts/fragments/self-states’ that handle different situations/contexts – i.e. a part that handles driving, a part that does your job, a part that parents, etc.), finding it hard to think of yourself in multiple contexts simultaneously, sometimes behaving very differently in different contexts, more than typical (ie extreme shame or shyness or forgetting their strengths around certain people when person is also very outgoing and self-confident in other situations)
  • whichever ‘part’ is expected or associated with a given situation is likely to ‘come forward’ involuntarily when in that situation/with that person. Can be useful coping strategy as when you automatically ‘become’ your capable self at work when you were completely non-functional at home, or can be disruptive/scary/uncomfortable when you can’t prevent switching around certain people you would want to not-switch around (ie people who trigger associations or lessons from original abuser), or as the ‘walls’ between parts of cognition begin to break down as you age and previous coping strategies no longer work)
  • extreme feelings of shame or feeling some part of yourself is monstrous, unacceptable, abusive, subhuman, wanting to ‘cut off’ parts of yourself or ‘dissolve’ them or make them go away, denial of self-love for parts of yourself, difficulty even looking at this shame because it feels primordial and unquestionable, certainty that this part of the self must be hidden (even from oneself)
  • concurrent self-medicating or ‘checking-out’ strategies (addiction to substances, internet, sex)
  • seeking physical contact/reassurance, may end up in unsafe sexual situations when seeking care
  • concurrent physical issues caused by chronic elevated stress over time: respiratory infections,
    autoimmune disorders, inflammation and inflammation-related illnesses, sleep disorders, weight gain, tiredness, difficulty healing physically, allergies, adrenal fatigue
  • difficulty with self-regulation of nervous system (skipping developmental stages, needing lots of skin on skin contact or bodily pressure to feel ok, to sleep, to not feel physical discomfort, like an infant or young child would need. Skin on skin contact or full body pressure feels needed to survive)
  • suicidal ideation, depression and anxiety, caused by the trauma or by triggers, (different from depressive/anxiety disorders)
  • sleep disorders, night terrors, avoiding sleep, frequent wakings or disturbed sleep, may sleep best with safe trusted company
  • difficulty imagining trust, belonging, or safety, may not know how these feel but may not realize it

not making the connections between these different experiences, not putting the picture together, finding it hard to think about things together (ex a person may have nightmares, feeling of unreality, slippage in space and time, and a partial ‘pantheon’ of figures, but never put any of these things together or notice they may be related). Not noticing that the slippage or disconnecting is even happening. Awareness may be only of feeling a little ‘spacy’ sometimes but not of all the other sensations or experiences, not knowing it is possible to feel any other way.


Helpful and unhelpful ways to respond: how you can support, or at least not harm, people with DDs (handout)

As always, how to be supportive is different for different people, so the best thing you can do is always ask. ‘What do you need?’ ‘How do you like to be supported?’ ‘Would you prefer I do this, or that?’ are always useful questions, especially if you listen to, believe, and honour the answers. This list isn’t intended to be the magic solution for all situations; it is just a way to start thinking about options, tools, and possibilities, and to offer some of what I have seen as helpful and unhelpful in how people respond.

Educate others and speak up. Actively educate yourself and others around you. instead of leaving it to the person struggling with the disorder to educate others in the community, share this destigmatizing; if people respond with a stigmatizing or blaming reaction, you can point out ‘it isn’t their fault, they have a dissociative disorder, maybe you could be more accepting.’ Make links to the abuse or violence that caused the dissociative disorder, and to the need for social inclusion in countering the effects of structural violence. Just as we are learning that people with depression aren’t to blame for what they are experiencing, and we can love and support them as they are without expecting them to “just snap out of it,” people with dissociative disorders cannot just “snap out of it.” It isn’t something they’re doing on purpose, and they may already be feeling quite a lot of deep shame about it. Add to that the fact that the experience of dissociation puts even very verbal people into a childlike, sometimes nonverbal state, or makes it very difficult for them to choose or even access speech, and expecting them to be able to act in the normal ways adults usually act or judging them for an inability to explain what is going on or stop it is actually cruel. Blaming someone for involuntary dissociative actions is akin to blaming someone for limping when they have a hurt leg. You do not ostracize someone socially, you offer support in a nonjudgmental atmosphere, and work together to find healthy inclusive ways for everyone to feel good.

Don’t be a bystander; you can make the world safer for people with dissociative disorders by normalizing the fact that this disorder exists, is not their fault, and is actually quite common.

But do not out people or share info you know that the person experiencing it has not agreed can be shared. Outing people can lose them friends, jobs, driver’s licenses, housing, and maybe even control over their bodies, because whatever ‘part’ is expected is more likely to arise for a dissociated person, so having people know of their alters makes it more likely that alters will step forward. This may not always be what the person wants; for most of us, keeping our adult selves ‘in front’ is crucial to how we hold our lives together.

Counter stigma. Get comfortable talking about and hearing about experiences that fall outside the ‘norm,’ including dissociative experiences. Get familiar with these experiences if you’re not already, so they become normal and easy to talk about. But do not expect someone with a dissociative disorder to be able to or feel safe explaining it or talking about it or even showing you what is going on inside them. The only places that feel really safe to have alters come up are very very private, intimate, utterly safe places with people who are not going anywhere and are totally accepting and stable in their support. Because dissociation is situational, telling people does make it more possible that we might dissociate around that person. When we can’t choose when and how the switching happens it can be very destructive. Imagine having parts of yourself that act without your conscious will – really take time to imagine that. How would you want people to respond to you? Make it normal and see how people blossom at this acceptance.

Remember that ‘distressed states’ are just a facet of their personality and that there is a whole person in there even at moments when they can’t remember themselves; focus on what you and others in your community like, trust, admire about them. Also remember that even the ‘emotional’ parts of them are good. Usually these are just scared traumatized children who have all the wonderful qualities that a sensitive child would have had, and they just need love acceptance and support like anyone else. If their actions make you upset, you can learn how to set healthy boundaries without creating walls or judgment or using anger and distancing to try to control them; coercion or threats of abandonment don’t work, and are retraumatizing. Instead, know your capacity to offer love and care and support, and stay within your own limits. Build and actively use a support net so that friendships do not get overly taxed, and step up and back appropriately. Take this opportunity to learn about yourself and increase your ability to be part of a community care net by increasing your awareness of your own limits and capacities in advance. Get good at communicating your needs and capacities in a mature way. Don’t blame the person or get angry at them for things that are out of their control; it is cruel and makes healing much harder. Mad mapping/wellness mapping and advance directives are useful tools for community care; use them. Work on your own attachment practices and styles so that you can be supportive.

Listen Deeply recognize the person may be having immense difficulty expressing what is happening to them or using language. They may say things that seem out of character, words tumbling out of control, or may struggle to speak at all. Listen for the quiet reasonable part that may be trying to express what would return them to a feeling of safety. If you speak to this ‘part’ you may make it easier for this ‘part’ to come forward. As the person how this feels for them. Do they want you to talk with ‘fragments’ or just with the ‘apparently normal self’?

Believe in them and in their self-knowledge. Don’t try to ‘guess’ when someone with a dissociative disorder is or isn’t dissociating, or try to guess what that might feel like. Just ask them. You will not guess right because the way it feels varies from person to person and internally day by day even for the same person. Sometimes people may be severely dissociated and it will be obvious if you know what dissociation looks like for that person, and prior understandings, such as mad maps, can be very helpful, but sometimes normal life is going on and there is some background noise of dissociation happening at the same time. Dissociation does not mean ‘switching’ in some simplistic sense where you literally talk to different people, because even for those who have severe DID there are varying degrees of co-awareness between fragmented self-states. It is always all one person, just a person with fragmentation in their awareness.

Trust the person’s expertise about their own experiences and respect the safety agreements they ask for. Trying to guess when someone is or isn’t dissociated, countering what they say is going on, is demeaning and demoralizing. It is stressful and scary to have to ‘convince’ people that you are not dissociated when they think you are, or that you are dissociating when they think you are not. Having people not trust you on your own self-state adds extra layers of pain to the already complex and challenging process of learning to understand your own internal experience. It takes away yet more autonomy from people who already may be working overtime to maintain autonomy over their own body. Someone with a dissociative disorder may not always know when they are dissociating, especially when it is just partial or when they are so used to dissociating they don’t notice – but they can learn, and are usually working to get better at recognizing their own symptoms. They will always be better at recognizing it than you. So show the person you have faith in their knowledge of themselves – and actually have it – by simply asking them in an open, accepting, and listening way, whether they are dissociating and what would help, and letting them have space to figure out the answers. They are the best situated person to understand their own internal experience. In addition for many of us, when we ‘are’ and ‘aren’t’ dissociating isn’t so clear cut – there is no ‘true’ personality, and our adult competent self is also an alter. So love us whole, accept us whole, and trust we know ourselves better than you do, if you want to help.

Don’t diagnose people or tell them what they need. On that note: when we are already experiencing loss of agency and control over our bodies and potentially aspects of our lives and minds, being told what we feel and what to do in a paternalistic way rather than being listened to and supported is extra scary and disempowering. Also these experiences are extremely complex on the inside – oceans of cause and effect – so what you see on the outside may be very different from what the person is actually experiencing. Trust them and teach them to trust themselves, especially as this agency may have originally been denied them by the original situation that caused the fragmentation. The person themselves is best situated to figure out what they need, with your support and faith in them. It can be very very hard to come into speech from deep inside yourself to name what is happening and what will keep you safe: listen for that quiet voice trying to speak, and help. Be an advocate for the person.

Counter Gaslighting. If the person has internalized beliefs about shame or unworthiness due to abuse or violence they have experienced, or if they are being shamed or ostracized, or if they find it hard to think about events, help them see themselves and the situation more clearly. If someone has changed reality on them (common in trauma situations with complex PTSD) or made them feel something is their fault that is actually structural or external to them, help them see it. Work on being able to see it yourself, by recognizing structural violence and putting responsibility where it belongs.

Wait it out. Mark Twain famously said “If you don’t like the weather in New England, wait five minutes.” Someone who is switching, including subtly when there are no clear distinct ‘alters,’ may not remember that five minutes ago they were fine. Once they feel fine, they may not remember why they were so upset. Be the bridge: when they are in distress, remember for them that this is not their whole self. Give them time and patience and remember who they are, until they come back to themselves.

We’re not trained monkeys. Don’t exoticize or mystify the experience. It is actually very common, it isn’t actually that bizarre, and there is a perfectly ordinary human in there who is having these experiences. People may choose to share with you if you are trustworthy, but do not ask for people to ‘perform’ or ask to ‘meet’ alters. Do not ask ‘which you are you?’ People do have varying degrees of co-consciousness between parts, and how internally consistent they feel changes for any one person over time. The inner experience is generally much more complex than the idea of ‘many people inside one person’ would suggest. Remember this is all one person, just someone with a trauma history and fragmentation in their spirit. Talk to them the way you would anyone else.

Make and keep agreements about which parts you speak to; adapt agreements as needed over time. Find out whether (and when and how) your friend or lover or coworker finds it helpful for you to address alters or fragmented self-states. sometimes if you have a very trusting relationship, you can help by building trust with fragments, but this is a long-term responsibility, akin to the responsibility of parenting, and cannot be entered into lightly. Often you may help more by simply accepting that fragment-states exist, offering kindness and understanding, while agreeing to interact only with the ‘adult/apparently normal’ self-state, since addressing the adult part of your friend may let them be that part of themselves more easily and may protect the ‘younger’ fragment-states from reinjury or retraumatization. If you decide to start building trust with child-state fragments, you must stick around for the long haul or risk retraumatizing these parts that need trust to counter the shame that made them; keep that in mind in your decision-making about your capacities. Sometimes it is best to decide together that everyone agrees the fragment states are allowed to exist (there’s no shame in them and the symptoms are totally ok), but you’re choosing to talk to or interact with the regular adult part of your friend.

Understand that healing entails change. Adapt as the person learns more about what helps. What was useful understanding a year ago may have changed as the person moves along their healing path. Get good at supportive, interdependent boundaries and at communication. Caring about and supporting someone in a non-stigmatizing way means growing with them as they grow, moving with them in the dance of relating.

Unconditional acceptance and kindness, along with formal structured support systems and ending stigma, are the best cure. Dissociative disorders are among the most treatable mental health issues, responding better to treatment than anxiety or depression.

Make mad maps. The best way to build collective safety and capacity for mutual care and support is to create mad maps, which let someone think ahead about how their community, family and friends can best help when they are in distress. People with high-betrayal-trust trauma may not understand or believe that they deserve care, inclusion, or belonging, and so you can model this for them even if they do not understand how it feels to be included and to have their legitimate needs for safety recognized and met. Mad maps also give you clear info about who the primary support people are, so people do not get overwhelmed or feel in over their heads. This is important, because protecting relationships over the long term prevents retraumatization, shaming, and social isolation, and experiencing genuine trust encourages healing.

Build nets. To spread out the care and help the primary support people feel supported themselves, some people like to create a formal ‘net’ of support. Different friends may enjoy offering support in different ways. For instance, one person might like to be the one who checks if you’ve eaten and slept that day, but doesn’t want to do a lot of emotional processing, while another might love to listen to the minutia of emotional healing, but won’t want to cuddle you to sleep. Everyone can help in the ways they want to when you create a net of trusted friends. This is usually done in confidence.  The members of the net know who each other are, and have permission from the affected person to turn to each other for extra help and ideas. Nets also mean the person at the centre offers a gift to their community of fostering stronger relationships. The bonds formed and learning that arises through these nets is a gift the person with the dissociative disorder shares with their family and community, by strengthening the genuine bonds between people and helping people be more vulnerable with one another, building trust.

Share responsibility for creating a safe culture for people with dissociative disorders and with all ‘divergent’ mental health experiences. Speak up. When you are witness to someone stigmatizing people who have these experiences, whether in private or in groups, don’t silently go along. When someone you know engages in demeaning gossip, attacking, ostracizing, or shaming, of someone with these symptoms, try saying something simple like ‘you know x has a dissociative disorder. it isn’t their fault, it is caused by (name the structural violence) and they’re doing their best. Maybe you could have a little more understanding.’ Just as we don’t leave it up to trans people to always have to be the ones to ask for pronouns to be respected, because it isn’t the job of the person who is stigmatized or facing ignorance to educate everyone – it is all of our responsibility – we can help reduce stigma and ignorance about dissociative disorders.

Many people have them and keep that info and symptoms masked. Currently it is not very safe to be out as having a dissociative disorder. Let’s change that. If someone you know has dissociative symptoms and is able to name what is happening to them in whatever way they understand it, do not shame or ostracize them; and if you hear people getting angry or being judgmental about these symptoms, speak up. You can say ‘it’s not their fault, and judging them isn’t right.’ You can learn more about the disorder so that it appears less mystifying and esoteric and more ordinary, so that people struggling with these experiences don’t need to do so in secret but can learn that they are safe and accepted.

Give people the benefit of the doubt. Sometimes symptoms of the disorder can mask as personality traits; people may decide you are simply an unreliable or untrustworthy person if you appear to have sudden inexplicable changes in self-state or awareness. It is important to be able to simply ask, rather than assume. If the person is experiencing an involuntary change of consciousness or is unable to speak from their ‘adult’ or ‘ordinary’ self, or can’t concentrate or is suddenly foggy or not all there, work with them to help bring that part of them back out. Do not blame or get angry at child-states as that elevates tension and makes the situation much harder. Usually with a collaborative agreement and some basic safety agreements made – and kept – the person can get a handle on what is happening, and can take responsibility for their actions. While you can’t always know what is happening inside someone who does things you don’t like, in general giving each other the benefit of the doubt creates a more accepting, loving culture that makes everyone safer.

No, it’s not ‘an inner child’. Dissociative disorder is different from the idea of ‘an inner child’ and it is demeaning and disrespectful to insist they are ‘the same’. It’s a common question people ask, and it’s fine to wonder and ask, but the answer is ‘no, this is not the same as your inner child or childish emotions.’ If you insist that it is you are not listening. Your ‘inner child’ may have a bad day but it does NOT take over executive control of your body, or make you black out and not remember later what you did, or speak in a literally separate voice, or move your mouth to answer your questions. These are real things that are happening in our brain and spirit – they are neurological structures within us and/or fractures in our spirit. Ask if you want, but when you hear the answer, don’t tell people you know what is happening inside them as it’s incredibly disempowering and disrespectful.

Stop ‘Atticking’: Include and honour, don’t shun or hide the person. Be conscious of the history of ‘the madwoman in the attic.’ Don’t try to hide the person away, or encourage masking or shame over the symptoms. When you encourage the person to hide you’re retraumatizing them by reinforcing the original shunning/shaming. Be aware in particular of how gendered this is, how much women are taught to not have needs, to not have concerns and harm seen. If their symptoms are embarrassing to you because they are not normative, how do you think it feels from inside them? Normalize instead of hiding. Act as an ally who can say ‘hey, you’re welcome with us as you are even when you are dissociating. Here is your seat at the table. You don’t have to pretend to be feeling ‘normal’. We get it, and we get you, and you’re welcome here just as you are.

Use a structural perspective. Actively make the connections – for yourself and for others – between violence a person has experienced in their formative years and the dissociative symptoms you may be witnessing now. Since this violence may be hidden, and/or may be old (though usually it springs back up again when exposure to traumatizing situations occurs, such as at family events or in similar contexts, so it may not be as ‘in the past’ as all that) help the person make the connections and see with adult eyes that what happened/s to them is NOT THEIR FAULT and not about them at all, not a measure of their worth or value as a human being or deserving of acceptance. If you are close to someone who has a dissociative disorder now because of patriarchal or racist violence that structured their psyche, talk about that with others around them instead of erasing it or individualizing the disorder. We do not exist in isolation, and the symptoms that show up in one person can be indications of normalized violence acted out by another. Think about relational responsibility, and learn how to develop healthy boundaries instead of cutting ties. This is how our politics is lived on the ground.

Don’t say ‘Just stop’ or get angry at the person experiencing dissociative symptoms, involuntary behavior, switching, etc. This is cruel because they can’t ‘just stop’ and threatening to stop speaking to them if they can’t stop an involuntary mental health issue will be likely to raise the level of distress of the alter, making it harder for the person to do what you’re asking rather than easier. Work together with the ‘adult’ or ‘reasonable’ part of them to help handle the distressed self-states together.

Say “this isn’t your fault,” and “there is no shame in what you’re experiencing,” and take the time to make the political connections to see why that is true.

Stand with, stand alongside and be allies to people who have these experiences.

Do the long term work within yourself to increase your compassion and empathy for self and others. Compassion for self and compassion for others grow together and are related: the more you can offer care and love and acceptance to yourself the more you can offer acceptance and safety to one another, to create a fertile ground for healing.

Please feel free to join the Dissociative Disorders Knowledge Sharing group

 

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How to use this resource: any way you would like! As long as you do so with credit given, I’d be happy for people to adapt it, make it your own, run your own workshop for your friends, supporters, and community. Please credit and link to this page clearly if you use parts of this workshop. I’d also be happy to collect additional role play scenarios, and other ways that people understand their experiences, particularly how folks in Indigenous communities and POC communities understand these experiences, so that I can share those other ‘streams’ of knowledge with future participants who come from similar experiences and may find them helpful. Contact me at nora.samaran@gmail.com.
If you’re an artist and want to create comics out of this resource I’d love to hear from you.

If this was helpful as an information source for those with dissociative disorders and the people supporting them, please share it. 🙂 I would love to get the word out and change the stigma to create more acceptance and general knowledge about dissociative disorders – you can help by sharing this on twitter or facebook. Thanks!

Additional Resources:
http://themighty.com/2016/02/what-i-want-you-to-know-about-dissociative-identity-disorder1/

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