Bearing Witness to Pain and Suicide

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Between Rose and myself, today has involved touching base with or trying to arrange supports for 3 suicidal people. We’re home now, the doors are locked, the phones are off the hook, and we’re sharing dinner. Rose has cooked using these beautiful little tomatoes from our garden. Someone stole our trowel and I got paid today so I bought her another one. It’s become a project we love working on together, a little hub of abundance in the middle of our busy, at times tiring, lives.

We both know what it’s like to be in that place, how dark, lonely, and desperate it feels. Sometimes there’s concrete things we can do to help, linking people to resources, taking people to hospital, going around and giving them a hug. Sometimes there’s so little we can do except bear witness. To find some way to say “I see you. I hear your pain. If you should die tonight you will be mourned.” I told a friend today that working in mental health with a system that doesn’t support people in ongoing crisis, at times I feel like I am standing at the gates to Auschwitz, helpless to intervene, marking a tally of those who enter and will never return to us. Sometimes counting the dead is all I can do, and it kills me inside. I’ve written about bearing witness before:

These are people, who get thrown out of hospital for being a nuisance, who get turned away from services for being too sick, too suicidal, too much hard work. These are people who are dogged by the impact of chronic trauma and abuse, who fight so hard to stay alive through so many dark nights and simply run out of fight, people who want to live but can’t bear the pain any more and who sometimes want to die, whose ambivalence is misinterpreted as manipulation, whose suffering is disregarded as attention seeking. They are real people. Under the labels like Borderline Personality Disorder, Dissociative Identity Disorder, under the other labels used (mostly) when they’re not in the room – asshole, stupid, FITH ‘fucked in the head’, bitch, waste of space, they are humans. They are dying. And if they die, they should not die unloved. If they die, we shall mourn them. If there truly is no hope (a common reason services withdraw help, because they’re ‘probably just going to die anyway’) we should not throw them out of services but move them to compassionate palliative care services. That’s what a caring society does for people who are dying.

I’ve seen this too often. I’ve had to contact media to force a hospital to admit a friend who had been left, untreated, without food or water, in the ER for ten hours with her arms lacerated by self harm. I’ve had to coax a friend into drinking activated charcoal to absorb the poisons that were killing them from a suicide attempt, because they had been marked a chronic complainer with behavioural issues and the entire state public mental health system had been closed to them – even sympathetic doctors could no longer admit them. I’ve myself turned up to ACIS, our crisis support service, homeless and acutely suicidal and been turned away because “we don’t treat people with DID very well, you’ve got a better chance of surviving on your own”… and that doctor was right. I did. I’ve supported people to increase their level of dissociation to survive the night when distraught and suicidal and unable to access any kind of support. I’ve visited people dying of self inflicted harm in hospital. I’ve sat on their bed and held their hand and shared ice cream with them. If I had a dollar for every email from a person with multiplicity who was confused, suffering, lost, and being more harmed than helped by the mental health services, I wouldn’t have a lot of debts left. I’ve lost friends to suicide, and supported others grieving after losing someone they loved to it, and shared poetry about it, and exhibited artwork in exhibitions to raise awareness. Since I was first suicidal at 10, it’s been part of my life.

So today – please bear witness with me. I’m not breaking any confidentiality, I’m not exposing anyone. I’m telling you that people like me stand at the gates and we tally the dead. Everyone we lose is a loss to all of us. A book too short, tragically ended, a life cut off. This is not the way people are supposed to leave us. Each loss makes the world a little darker, the night a little colder. We must find ways, together, to see people in pain. To bear witness to their lives. To sit with their pain. To mourn and to scream and to find ways to live. To burn brightly. To bring warmth.

If you are feeling suicidal yourself, or care for someone who is, you might helpful:

What’s the deal with Integration?

Integration can be a Hot Topic for those of us with multiplicity. It used to be (and sometimes still is) pushed as the cure for our illness, our only chance to be a normal person, and have a normal life. People who couldn’t integrate, didn’t want to, or tried to and had it fall apart on them were seen as more sick, less recovered, less committed to recovery, treatment resistant, or basically in some way a failure. So it can be loaded topic with heated diverse ideas and often some firm opinions and rough experiences for people. Hence why in 3 years of blogging about multiplicity I haven’t wanted to tackle it before now!

It doesn’t have to be so divisive of course, the issues really aren’t about integration, they’re about this idea of failure. If integration is an option rather than a cure, a lot of the heat and stress goes out of this topic. That’s certainly how I prefer to talk about it.

So, let’s start at the beginning, what the heck is it? Well, that can be tricky to define, because different people and different books use the word to mean different processes.

Fusion or Merging

This is the most common use of the word integration. It refers to the combining of two (or more) parts into one. Separate consciousnesses, or selves, become a single self, combining memories, skills, and attributes of both. For those who use a clinical dissociative framework, an analogy might be the dissociative walls between parts coming down, so that every part can be out together, all the time, sharing all of life, all the memories, and all the energy. Generally speaking integration is only used to describe the merging of all parts into one, but sometimes I have come across variations in that too. There’s a experiences of fusion shared in the biographies The FlockKatherine It’s TimeA Fractured Mind, and Not Otherwise Specified.

Retirement

Some people use integration to describe a system where all the parts but one have been retired from coming out. One part now runs all the life, and the rest live inside where they may be sleeping, playing, advising, or doing their own thing, but they don’t come out any more. An experience of retirement is shared in Today I’m Alice.

Passing On

Some people use integration to mean that all the parts except one go away. People might pray away parts, have them exorcised, experience them ‘die’ (without harming the body), or simply find that they have fulfilled whatever function they were needed for and disappear. Sometimes passing on happens spontaneously, sometimes it is the specific goal of therapy or an intervention of some kind. There’s experiences of passing on in Little Girl Fly Away, Fractured, and A Life in Pieces.

Co-operation

While most people see this as an alternative to integration, sometimes this is described as integration, which can really be confusing! With co-operation the parts work together as a team, sharing the body and life and making decisions together. Basically, it’s a multiple system that functions well with parts looking after each other, sharing information and resources, and putting effort towards common goals. There’s experiences of co-operation shared in First Person PluralWhen Rabbit Howls, The Sum of My Parts, and Five Farewells.

Several of these outcomes are described in In Two Minds. Most of these books can be borrowed from the DI Library.

So, if you’re reading or hearing someone talk about integration, it can be really helpful to know what they’re using the term to mean! Of course, a person with multiplicity may use all of these approaches, at the same time but with different parts, or at different times in their life – perhaps they work on co-operation which leads to fusion, or perhaps some parts fuse, some retire, some pass on, and the rest co-operate.

Integration is a word that also has different meaning in other contexts. It’s often used in trauma therapy to refer to someone’s ability to process, think about, and link into a personal narrative an experience that has been jarring and out of sync with their sense of themselves and their story about their life. In that context it is always seen as a highly positive thing, and that may be part of the challenge about the way it is used with multiplicity – because in this case it describes a process that people experience in diverse ways, ranging from profoundly welcome and life-saving, to highly distressing, destructive, and disabling.

Integration can mean a connection, as in technology or biology when we’re talking about different processes working together – for example “visuomotor integration” – how well our sense of sight and our muscles work together. Integration can be about harmony in difference, such as architecture that integrates well with the landscape. In science integration is the inverse of differentiation – one example of differentiation from biology is the process by which cells change from being generalised (such as the stem cells that start off building an embryo) to being specialised – becoming nerve cells, muscle cells, and so on. Integration is the opposite of segregation when we’re talking about civil rights or putting kids with disabilities in mainstream schools. When we’re talking about immigrants and culture, the word integrate is often used to mean assimilate – that is, the minority or inferior group should adapt and conform, to become absorbed into the dominant culture.

I see some obvious parallels in these various uses of the word integration and how it is experienced by people with multiplicity. Some people see either fusion or co-operation as the best goals for people with multiplicity. Some see passing on as the only possibility. Some people with multiplicity deeply desire fusion, while others are aiming for co-operation. Some people are terrified of losing parts. Some systems have different parts with very different goals, which they may try to impose on each other and team up with other people such as a therapist, to try to enforce.

Where the big issues come into play is often not what the goal is, but who chooses it and how it is defined. If a therapist, healer, priest or so on chooses the goal for a system then their efforts to create that may be highly traumatic, no matter what the goal is, or how well intentioned that person. If a goal is presented as the only possible option for a good life, then people can be devastated if their system simply doesn’t fit it or can’t sustain it. There is not one experience of multiplicity out there, there are hundreds of thousands. There is not one experience of integration either. Here are some diverse stories I am aware of:

  • A person with multiplicity who works hard in therapy to fuse back to one part, and discovers that for them, a great deal is lost in the process: memories, skills, and so on.
  • A person with multiplicity who experiences a part telling them that they have done what they were here to do, and their lifespan is over. A ritual goodbye is performed, and a small private funeral. The part ‘dies’ at peace.
  • A person with multiplicity who draws upon their faith to pray with a trusted person in authority to have deeply distressed or disturbed parts taken away, and experiences relief.
  • A person with multiplicity who found a new, more calm and grounded part formed in adulthood and guided their system through stress and conflict.
  • A person with multiplicity who over many years, without therapy, learns about their other parts, negotiates their way through differences, and comes to work together as a team.
  • A person with multiplicity who works hard in therapy towards fusion, who’s other parts experience grief at their loss of separate self, but who finds deep wholeness and relief in integration and embarks on a new life direction with zest and hope.
  • A person with multiplicity who transitioned and went through sex change surgeries so the part of that gender could have time in a body they felt comfortable with.
  • A person with multiplicity who has no intention of fusing but finds that fusion happens gradually and naturally as part of trauma healing, and comes to term with their new single identity.
  • A person with multiplicity who is convinced by someone in authority that an exorcism of demons is their only hope for a good life, and finds it ‘works’ for several years as the other parts are deeply alienated and buried in their psyche, but then they return even angrier and harder to communicate with than before.
  • A person with multiplicity who is thrilled to fuse with their other parts, only to find that when they are stressed they split back into parts again.
  • A person with multiplicity who thinks that all the parts have gone, only to find a batch of new ones they didn’t know anything about.
  • A person with multiplicity who fused, split, fused, split again, and finally fused for good!
  • A person with multiplicity who had parts die only to come back to life some years later.

As you can see, people’s experiences are diverse!

So the stress about integration comes from many places, people who want to fuse but can’t seem to, people who are frightened that parts may die, people who are being strongly pushed into a process that doesn’t fit them well, or who are being told they cannot be whole or healed unless they do a particular thing or do it in a particular way. For some people fusion is amazing. I have seen it and it’s a marvel. For others it is akin to gay reparative ‘therapy’ for people who don’t want it, where people are trying to ‘cure’ something that is a natural difference in how people are, in the process making them much more vulnerable to suicide and self harm. I believe the risks of harm are higher when people are afraid, made to think one way is their only hope, and when they have no exposure to peers and diversity and are vulnerable to the ideas of a person with power in their life. I think the risks of harm are lower when people are able to sit with the idea that there may be many paths for people, and one is not necessarily better or worse than another, that what is supposed to happen for them will happen, and that whether you have single or multiple selves if you are decent to people, animals, and the planet, you are not a failure.

It is entirely possibly there is more than one form of multiplicity, some of which respond well to fusion or other types of integration, and some of which don’t. Certain philosophies and branches of neuroscience consider that it is a sense of having a single self that is an illusion and that all people are a collection of multiple selves and processes. The mind and consciousness are simply amazing. Please be reassured that if you have had bad or frightening experiences trying to navigate multiplicity that you are not alone in that, and that people, parts, and systems can recover.

Personally, when I was first diagnosed with DID in 2007, I had a plan. I was going to be a model patient, obey every instruction, and integrate within a year. I wanted more than anything in the world not to be multiple. I wanted to have a life, to finish my degree, to have a job, to be a parent – and I didn’t think I could do that if I was multiple. Putting my system under that pressure knocked us around badly and our functioning started to fall apart. We’ve ended up walking a much more roundabout route, focusing on specific challenges such as accepting our sexuality and rebuilding our social support, and figuring that if fusion is supposed to happen for us, it will happen in its own time. I’m okay with that! I don’t need to be multiple, it’s not what makes me special or gives my life meaning or gives me an identity. I’ll still be the strange mad creative oddball we are now. I also don’t need to be single to be whole, healed, or have hope. I don’t think single is the best, right, or only way for people.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

Multiplicity and Love

How do you get engaged when there’s more than one of you?

There’s a million different ways. I’ve written before about multiplicity and relationships, and also about how switching affects relationships. Some people don’t know they have multiplicity when they enter into long term relationships. Some have a single part bond – one part is engaged, the others may have reactions ranging from excitement to indifference to horror, or be entirely unaware this is happening until they come back out maybe months or years later. Some may have group bonds where many parts have relationships of various kinds with the other person.

I’ve done romantic relationships before I knew about parts. They were tremendously challenging. Things would be going brilliantly and suddenly completely derail without warning – what I now know was being caused by different parts switching and needing completely different things. Child parts would be distraught at being kissed on the mouth, wild parts would need to run in the night, the poets needed ink and solitude and contemplation and freedom to be melancholy, the researcher craves new information and sharp minds to discuss with. The experience for the partner is one of ‘consistent inconsistency’. Some days I drink my tea this way and some that. Some days I love licorice and some days hate it. Some days I sink into a hug and some days flinch. Part based roles make it challenging to engage relationship boundaries – this part remembers all the good things, that part the bad. When the former part is out they are happy, easy to get along with, generous, and malleable. When the latter is out, they are frustrated, suspicious, and desperate to repair whatever trust has been broken or boundaries violated. Hence the bounce between ‘everything is awesome’ and ‘everything is broken’.

The real challenge was in discovering that they are both right but also both a little unbalanced because of the skewed information they have to work with. For years we thought my part who recalls the painful and frightening things was simply us being ‘depressed’, and that we should ignore everything we think and feel during those times as merely being the product of mental illness and low mood. Turns out she actually had some really important points, and that without her perspective we’re really vulnerable to exploitation and abuse. On the other hand, most of her proposed solutions were drastic and destructive. We had to take her input and work on something more useful to do with it.

I’ve also tried my hand at romance once I knew about my multiplicity but wasn’t ready to share it. That was challenging in a whole different way. Concealing switching was easy because that’s how my system usually works anyway, but trying to get a partner not to take it personally or think they’d done something wrong when I needed things to be platonic for child parts, for example, was really hard for me. I found that I started to feel like a sleeper agent with a cover story. There were real feelings and people and lives around me, but a central secret about who I was disconnected me, and the constant need to conceal and the terror of being outed caused me tremendous distress.

I’ve been in romances with multiples as well as singles, guys as well as girls. They are wildly different in some ways, but I wouldn’t describe any of them as fundamentally ‘easier’, just different. I’ve found that we gravitate towards people who have access to a wide range of ‘sides of themselves’ if they’re not actually multiple. That is, what we usually mean when we talk about parts of ourselves; ‘part of me wants to study tonight, part of me wants to go hang out with my friends’. People who have found one way of being in the world and stick with it through all circumstances tend to confuse and sadden me. I can often ‘feel’ their buried parts or cut off emotions, and struggle not to interact with those sides of them. I can find myself impatiently waiting for them to reveal more of themselves – particularly when their approach to life is clearly not working for them – why don’t you switch already? Sometimes I feel like the lucky one and people with so little access to other perspectives and ways of being in the world feel like the ones who need help.

That’s not to say that these other ways can’t work! At one point I was in a relationship, as an undiagnosed multiple, with another undiagnosed multiple. When it worked it was beautiful, a synchronicity, us against the world, at last someone who functioned the way I did, needed the things I needed, saw the world the way I saw it. When it didn’t work it was agony. People find themselves in very different situations and navigate their relationships in different ways. There’s no right or wrong answer here, just different ones, and the challenge to love without harming or being harmed.

Rose is the first person I’ve been involved with as an ‘out’ multiple. I vastly prefer it! It means that the night one of my deep, very wounded parts came out and had a panic attack when Rose touched her made sense. I could explain what happened. Rose could adapt. Rose now recognises almost all of my system by sight – how we talk, walk, hold our body, the colour of our eyes. She knows our individual personal names. Even when she can’t tell who it is, she can tell the basics that she needs to know – adult/teen/child, male/female/other, romantic/platonic, reassured by touch/traumatised by touch. With that information we can both navigate the switching and build and maintain relationships between everyone. She’s met most of us who switch out, and with most has formed a strong relationship of some kind. In our case, there’s several who are romantically involved with her, then there are friends, ones who relate more as sisters, ones who only get involved occasionally, and so on. We’ve proposed as a group, and so we didn’t ask her to marry us, but to be our family, because what we’re asking for and offering is different for each of us.

There’s challenges! Everyone doesn’t always get along. Parts have different needs. It can be easy to fall into a carer/caree dynamic as that is how we are seen in the mental health world. There’s the added pressure of being treated as ‘trailblazers’ who are proving that relationships with multiple are (or are not) possible. Rather similar to the way that our relationship is seen as representative of all lesbian relationships in friendship or family circles who haven’t been directly exposed to any others. There’s the challenge of embracing Rose without writing her into my system – letting my child parts love her but not treat her as a parent (that’s our role), not catching her up in the inevitable rescue fantasies that most of us who have at some point been deeply hurt find written into our approach to the world, not seeing her as others who have hurt us when things aren’t going well.

There’s also upsides. Like the time she asks for the part who handles physical aggression when we’re walking at night and group of guys is watching us in a scary manner… and I can say to her – already here love, don’t worry, I’ve got your back. It’s late night video games with my kids, it’s climbing trees with the wild ones, it’s sharing stories of homelessness with the survivors, and having huge conversations about peer work and youth work and social work and community and mental health and power and families. It’s Rose having someone who gets her experiences with flashbacks, nightmares, body shame, and self loathing… and can make her laugh about them. It’s about us having the stamina to switch out the tired ones and make it through a week of Rose in hospital, also keeping the pets alive, easing her trauma reactions so she doesn’t wind up sectioned as well, being there through severe pain, and putting all our needs on hold until it’s over. It’s about the contradictions that make up all people, writ large; the edible glitter on cupcakes and the goth nightclubs, the gardener and the naked body painter in a psychotic whirl, the person who takes lizards off the road and nurses orphaned kittens and the one who burns with rage when Rose is being hurt.

As I keep saying, multiplicity is normal human function, writ large. It’s a dance, between adult and child, light and dark, male and female, the apparently functional and the apparently wounded, the ones who fit in and the ones who don’t fit anywhere. We dance together, sometimes she needs me to make her laugh and my cheeky imp turns up and turns the house upside down. Sometimes I need her to hold me and tell me “don’t worry love, everyone gets to see your charismatic ones. I’m privileged to know the ones who don’t stand up in front of crowds”.

There’s days she cares for me but she’s not my carer. There’s times she feels deep empathy for me, but she’s not with me because she feels sorry for me. There’s needs she has that I’m good at meeting, but we’re not together to exploit my capacity. There’s ways in which we’re similar and also big differences. Navigating multiplicity is a key aspect of every day and every part of our relationship, and in another sense, it’s irrelevant. Once you get used to kids turning up in the lolly aisle at the supermarket and know not to be scared and wander around hand in hand talking about the virtues of kinder surprises vs gummi bears, knowing that I’ll switch back to an adult in time to drive home, it’s just not that big a deal. Once you’ve learned what helps in a bad night, then swinging into action to rub my back and listen empathetically as some wounded soul howls or flashbacks or recounts a nightmare is just part of our life. Trauma is part of our world, some times a big part to manage, sometimes so small it’s barely there, but it’s just something to live with. It’s not a source of shame or fighting or horror, we make plans around it just like we would if I was still in a wheelchair. We don’t compete about who is in the most pain, we don’t treat my experiences or my multiplicity as worse or more important or more amazing than Rose’s experiences of trauma and loss and triumph. She is neither healthier, nor sicker, nor luckier, nor less creative, than we are.

We’re both just people, frail humans, with capacity for light and dark, with frustrating and enduring weaknesses, with amazing strengths. We work to keep our power in balance, to love each other, to own our own stuff, and to make a great life together. Just like anyone else. Love is love.

Do you need a ‘DID expert’ therapist?

This is an assumption I come across a lot. People with dissociation or multiplicity are supposed to need extensive, painful therapy, by an expert in the condition, to stand any chance at a decent life. Hogwash!

First, the caveats: can therapists be awesome? Oh you bet your last cup of coffee they can! Can experts who have trained highly in their field, who are passionate and informed, be a huge damn relief to talk to and learn from? Hell yes. I’ve already written a little about what the point of therapy is and how to recognise good therapy.

Having said that, I tend to beat the drum of ‘you don’t need a shrink to have a life’ quite a lot for a person who sees shrinks. Why? Isn’t this ridiculously hypocritical of me? Do I just not want to share my shrinks? Well, it goes like this. I used to see shrinks because I was scared and overwhelmed and had no idea what the hell was going on in my head/relationships/life. It was SCARY. Super scary. I was terrified of everything about the process and used to sit frozen on my allocated seat, hanging on every word uttered by the shrink who was almost godlike in status and had the power to uplift or doom me with a word. I discovered over time that the idea that psychiatry is a science, that diagnosis is an accurate and sensitive tool, and that shrinks are infallible and highly knowledgeable about the complexities of life and how people work on the inside is pretty laughable. I collected diagnoses like some people collect shoes. Pick your shrink’s speciality, pick your diagnosis. I’ve seen a lot of shrinks over the years. Some have been great, some have been average, some have been horrible. Most have been at least a somewhat mixed experience – partly helpful and partly not. Horrible shrinks have been as much, if not more of a threat to my mental health than other horrible people in my life.

Going off to see shrinks meant I had ventured into a world that was selling me a bunch of ideas about myself and my life such as: I was sick. That someone else’s ideas about me (after a 45 minute conversation) were more accurate than my own. That all shrinks should be trusted, immediately, and any reluctance or failure on my part to engage in that proved that I had problems. That massive power imbalances in relationships are helpful for people with trauma/abuse backgrounds. That having a good shrink is the most important thing you need in order to have a decent life after crap has happened (not friends, or housing, or access to a really, really good library, shrinks). That I needed ‘expert therapeutic help’ to be able to function. That I needed someone in my life who could take control away from me and put me into hospital. That multiplicity meant I was broken, damaged, or in some way inferior to other people. That someone else can heal my pain. That my history and pain is about my choices and my reactions rather than a broader social context. That my suffering is caused by a random breakdown in my brain.

I haven’t found any of these ideas to be at all helpful. I see shrinks now, because I value having a safe place to talk about really tough or very personal things. I love to team up on thorny issues, to pick their brains about information I don’t have, and to explore difficult territory without shame. I do the same things with some of my closer friends.

I don’t give shrinks any power over me. If I disagree with them, I argue. If I’m not happy with their approach, I leave and find someone else. If they’re ignorant, narcissistic, or in some other way a person I really don’t like the idea of spending an hour with, I don’t hang around and let them start playing with my brain. I run the show. I choose who, when, and how to engage. My shrinks don’t cure me. They join me in my process, or they get out of the way. I employ them to help me achieve my goals. They are equals on an exploration, they are not a surgeon with a patient waiting numbed beneath the knife. Am I discounting their skills in describing them this way? No! It takes a lot of skill to be an explorer. Any old hack can cut into a vulnerable person, and every other bugger is convinced they can run anyone else’s life better than they can. But exploring? Now THAT takes skill. You have to be able to not know answers, to explore new territory, to listen – really listen, to be equally vulnerable and human, to be able to be present in the face of pain, to construct theories and ways of understanding the world, and be willing to turn them inside out when they don’t work. Good shrinks are highly skilled, wonderful people, and I love working with them. I’m aware of the context of the relationship – that is, the ideas embedded in psychology/psychiatry/counselling etc that I disagree with, and I make efforts to prevent them from taking up residence in my brain.

Frankly, interacting with shrinks takes a lot of skills, and this is often not acknowledged! You need to be able to tolerate the power imbalance. You need to be able to assess them for safety. You need to able to walk away from the bad ones. You need enough assertive skills to be able to give them feedback about their approach. You need enough articulation to be able to communicate with them. You need a whole stack of courage, a whole huge stack of it, to actually make therapy useful by being willing to get into some tough stuff. You need the ability to be able to keep seeing the shrink as a human being – either when you feel dependant on them, or pissed off with them, or really excited about them (or in love with them), it really helps the whole process if you can not turn them into angels or demons in your brain. (in some therapies, I grant you, that is the process) Basically, you do a lot of work! In fact, there’s a tenant of therapy I love which is ‘Never work harder than your patient’. The person who does the work, has the power. As imbalanced as the relationship is, it is still a relationship. Some of us are better at eliciting useful responses from our shrinks than others. This is also a skill. You also need to be able to grieve everything your shrink is not and cannot be for you, that they can’t be your parent or partner or lover or take away what you’ve come through. Sometimes this grief is so intense it overshadows every other aspect of the relationship.

Therapy is not useful for everyone, and not useful at every point in life. Even the very best therapy. Nor are support groups, or books, or meditation, or almost any approach to pain except keeping on breathing. Therapists are human. Even the best ones make mistakes, have areas they don’t know much about, or use frameworks and ideas that get in the way instead of helping. I’ve learned a lot from the good shrinks I’ve seen over the years and I really appreciate that. But no shrink has had all the answers or all the skills. I’m glad I’ve seen a few, as frightening and stressful as it was to lose or walk away from a good one. It’s been liberating to discover that I can find new good shrinks and get something useful from their different approach, and that I can cope without a shrink and look after myself.

I’m often contacted by people who are frightened they can’t navigate DID without a shrink. A good shrink will help this a lot, yes, but no shrink is way, way better than a bad one. If bad ones are your only options, get the hell out of there! It’s messy, but frankly, so is therapy. If you think trying to make sense of DID on the back of your book reading, some rudimentary peer support online, and a lot of slowly learning about yourself is really hard, then spare a thought for all the people dealing with involuntary hospitalisations, parts who hate the shrink and go berserk whenever an appointment comes around, and littles who bond to them as if they’re parents and are heartbroken when they can’t come over and hug them after a nightmare… it’s not all roses! Having another person involved with your system can be tremendously supportive, but it’s also a whole additional person with their blindspots and history and reactions and crazy ideas to deal with.

I’m often asked what kind of therapy is best for DID… and I can’t answer that question because there is no therapy for DID. There are a bunch of therapies for people. Some of them help shrinks to be better, more courageous, more patient and inspired shrinks. Some of them have frameworks and approaches that are more useful for more people. Often the type of therapy is way less important than your relationship with the shrink. Some of the most useful therapy I’ve had was counselling through a sexual health clinic, which has nothing to do with DID and yet – conversations about shame, development, desire, abuse, power, and love – everything to do with DID!

Experts are also often not all they’re cracked to be. Being an expert in something sometimes means it’s hard to see everyone as new and different. You get used to seeing the same patterns and using the same frameworks. You have blind spots, which over time you become less and less aware of. What was once a guide, over time hardens into dogma. As an expert therapist, you speak with authority, so less people turn up in your office and contradict you, so you don’t get exposed to new ideas. People get used to your ideas and approach and don’t feel like spending money to sit in a room with you and be told their approach is wrong. The expert position can be an ego boost, and a pretty comfortable chair to sit in. Dismantling it from time to time can take a fair bit of energy and courage. Great experts do this! They are proud of their work and passion and history with the topic, but they wear the label of expert pretty lightly, and they keep in mind that none of it outweighs the expertise in their own life of the person sitting in front of them!

One of the psychologists I saw for a year had no expertise in DID. I spent about the first 6 sessions having to reassure her that this wasn’t a problem. As I said to her – you don’t need to be an expert in multiplicity – I am! Sometimes there’s advantages to learning with a shrink, because you find and fit frameworks to your experience, instead of the other way around. Good shrinks that don’t know anything about multiplicity but are willing to engage it anyway are worth 100 experts who don’t click with you, listen to you, or understand your unique quirks.

So, by all means, go hunting for a therapist if you want one. 🙂 Look for someone who has heard of the word dissociation, and who can spell it… But don’t panic if you’re among the masses of people who can’t find this, or can’t afford it. You have lived with this a long time! You have a massive store of wisdom within you, and clearly, a will to survive. And if you’ve found someone good but totally out of their depth – great. Go exploring together. Don’t believe everything you read, try stuff out, be open to new ways of thinking about things, and go make a life. If you’ve fallen on your feet and have a great shrink who is helpful and knowledgeable about DID, awesome! I hope it’s brilliantly helpful, try not to be too surprised if things don’t go exactly as you think they will, and don’t be too scared if you lose them or things change at some point. Get the most out of it while you can. 🙂

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

What is it to have child parts?

It’s many things; funny, beautiful, inconvenient, sad.

This morning it was waking when the front door clicks shut,
to realise she’s leaving like the last ship
pulling away from shore.
There’s a teddy left on her side of the bed and a house
so stuffed with emptiness I can’t breathe.

It’s calling out her name and running
to the door to blink through tears
and try to memorise her face, to beg
a last cuddle before she walks into her day
and we creep back to bed
where the nightmares are waiting.

Freedom

26-2014-01-09 17.50.10

I sat down yesterday and wrote about how my world is opening up, changes in my system and approach, how I’m managing the ‘adult’ world of tax and business and admin completely differently and with far more skill. Then I found myself going back to old posts about my experience of psychosis, reading my sharing of the darkest nights of grief and loss. There’s a disconnection at first, that familiar awareness that I’m reading someone else’s writing, reading about someone else’s life. And then the growing recognition of us, that tiny glimpse of how far we stretch – from the darkest poet to the lightest administrator. And I find myself marvelling how freedom has changed everything for us. Where the literature wanted each of us to compress, to move closer together, become more similar, compact ourselves into a box marked Sarah and never step out of it again, we have found life in the opposite process. I am more ‘mentally ill’ and yet more functional. I have parts, and psychotic episodes, and days I shut myself in the house and do not speak, and sometimes I wear wrist poems as dark, painful souvenirs of a scream that sounded in my skin at 3am. And yet, I’m getting up and doing my tax with a clearer mind than I can ever remember. We’re getting out of each other’s way. We’re sprawling, stars filling the sky from horizon to horizon. I don’t have to choose one colour, one perspective, one way of living, one identity, one name, one life. We are moving around each other and enriching each other’s lives instead of stealing time and fighting for control. There is trust and sorrow and joy and anguish and pain and nostalgia and hope. This is not what it is to be a multiple – it is what it is to be a human. This is what life is, beautiful and tragic. I’m not turning into a ‘recovered patient’. I’m no one else’s success story. I’m not always comfortable to be around. I’m not leaving anyone behind, or killing anyone, or carving anyone out of my system. I’m finally keeping regular sleep hours but without excluding the poets and night people all the time. (that’s still a big work in progress) We’re building a business and a life as a structure that protects what is vulnerable and precious and unique about us, instead of excludes it, relies on pretending it doesn’t happen, or exploits it. In a weird way, it feels like integration, without fusing us back to one. It feels like I’m finally figuring how to grow up without dying inside.

Dissociation is a super power

“Please tell me there is an bright side to dissociation“. Someone found my blog the other day by searching for this phrase. It makes me ache with frustration and sadness!

Of course there is a bright side! There are so, so many bright sides. They get lost when we talk about illness, disability, deficits. When we share the ‘once it was helpful but now it’s a problem’ story. When we collapse a whole life into a single, painful narrative of difference and limitations. Dissociation can be horrific and devastating and I don’t make light of it or of the suffering people experience. But this isn’t the whole story! Let’s start talking about bright sides, shall we?

Not all dissociation is pathological

Dissociation has been broadly defined. This means a LOT of highly valuable, important skills are being included in the category. Some level of capacity to dissociate, when it is broadly defined like this, is actually essential in our ability to function. Disconnecting from things is helpful in our ability to focus. People who struggle to damp down any of their sensory input are overwhelmed and highly distracted by it. Being able to put aside most of the input (the sound of a fly buzzing, the prickly feeling of rough socks, the worry about your friend who isn’t talking to you, the slightly sick feeling after drinking too much water) to focus on something important, like an exam, is very helpful!

People who are struggling with severe and chronic dissociation, the kind that leaves you numb, confused, lost, unable to feel, taste, touch, smell, or remember the faces of the people you love, often think of these kinds of dissociation as existing on the other side of a continuum of health. That once they’ve got the ‘bad’ dissociation under control, and they’re back to ‘normal’, maybe then they will get to experience some of the good kinds.

I disagree. Those of us who are drowning in the kinds of dissociation that takes away instead of enhances our lives are closer to the useful kinds of dissociation than many regular people. We are well versed in it, we are used to it, we have a huge aptitude for it, and often we are only drowning in it now because we once stumbled across it as something incredibly helpful. Do we need skills other than dissociation to navigate life? Certainly! Does depending on dissociation exclusively leave us uneven and struggling? Of course. But, sometimes when I’m talking to people who are absolutely overwhelmed by intense dissociation, I talk about dissociation as a super power. Sometimes working on reducing it through grounding techniques and trigger management just isn’t working. Sometimes the first step is to learn how to live with it better, how to use it to your advantage, how to stop hating it and feeling destroyed by it. Sometimes we need to become better at being dissociative, rather than less dissociative.

We are so used to this idea that dissociation is bad. We are so used to this idea that our minds are damaged and broken, and that we need expert intervention to help us be more normal and functioning. Dissociation can be a terrible thing. But it can also be a gift.

  • Dissociation can be learning self hypnosis to turn off your experience of pain during a dental visit.
  • Dissociation can be letting go of the bad memories for awhile so you can have new experiences.
  • Dissociation can be the ability to attend uni and study despite homelessness and self harm and carer responsibilities and your dog dying.
  • Dissociation can be discovering that you have a part who has not experienced any of the loss or heartache, a part who loves like their heart has never been broken, who hopes and dreams and cares and helps to lead your whole system to better places.
  • Dissociation can be sobbing into the night, overwhelmed with grief at the loss of your child, and still being able to get up the next day to hug and cook breakfast for your other child.
  • Dissociation can be disconnecting from the panic and terror and the overwhelming smell of blood to be able to help out at the car accident.
  • Dissociation can be laying in her arms and touching her face and feeling the minutes stretch out to whole days, to years that you’ve lain here like this, alone together with no world intruding.
  • Dissociation can be not noticing you haven’t eaten all day because the book you’re reading is absolutely brilliant and captivating and you can see all the characters in your mind and hear them talking to each other and at night you dream about them.
  • Dissociation can be walking away from every cruel and unkind thing ever said about you and finding new ways to think about yourself.
  • Dissociation can be having other parts to ask for help, not being alone anymore through any of the hard things.
  • Dissociation can be a four year old inside singing you to sleep when you’re lying awake worrying about the world.
  • Dissociation can be going numb when you’re feeling suicidal.
  • Dissociation can be reliving the most wonderful, exciting, hopeful, inspiring moments of your life as if they happened this morning.
  • Dissociation can be smelling a perfume and vividly remembering your Grandma’s garden and the feel of her hugs.
  • Dissociation can be having a conversation on the phone with a sick friend, getting the lunch boxes packed, finding your shoes, filling up the cat food bowl, helping knot a tie, and getting out of the house on time to catch the bus.
  • Dissociation can be the way, for just a moment, while you’re swimming, or drawing, or listening to your favourite music, or watching him play, everything in the whole world is okay.
  • The ability to compartmentalise is what helps us to do our best in a situation. For a doctor to concentrate on a patients needs even though their marriage is rocky and they’re stressed and anxious about it.
  • Dissociation can be part of the experience of artists who lose time when they paint, and athletes who forget they are tired when they’re running, and happy nerds who don’t notice someone calling their name when they’re lost in a good book.
  • Dissociation can be about mindfulness. The ability to be captured by the movement of the breeze in the lavender bush, to taste every drop of beer and be immersed in the smell and laughter of other humans.

You can learn how to use your dissociation. If you can turn it on, you can turn it off again. You can learn how to trigger it, how to use anchors, how to dial it up and down, how to go with the flow. When to trust it, when to shape it, when to learn other skills. We have so much to learn! Something that can help you put aside overwhelming feelings, or not feel physical pain is simply amazing! We have this idea that you have to lose all of those things in order to be well, in order to not be overwhelmed by dissociation in a way that steals life. Maybe this is true for some of us. But I’d caution making that assumption for everyone. And if you’re stuck (at least for now) with some of the downsides of being highly dissociative, why not at least explore the upsides? Maybe we don’t overcome everything by fighting it.

There’s balances. My experience has been that using dissociation as a blunt instrument for every purpose has great costs. Choosing not to feel all the painful feelings often costs you all the wonderful ones as well. Containment often works better than suppression. Being guided by your own needs rather than imposing a schedule or ideas from outside. But if I told you that some people can choose not to feel pain when they’re injured, not to remember awful memories when they are busy getting out of that life, that some people still watch movies like little kids do, where the characters are real and make them cry, that some people find that doing their favourite thing in the world makes time stretch into something approaching infinity… you wouldn’t tell me these people are sick, you’d say they have super powers.

When Multiplicity doesn’t protect us

For most of us who come to multiplicity by way of trauma such as abuse, neglect, bullying, or chronic pain, we’re familiar with the idea of multiplicity as a creative defence mechanism, something that helped us to survive. This can be a powerful re-framing of the idea of multiplicity as an illness, and very helpful! For some people it’s not all of the story. In some ways, multiplicity can make you more vulnerable to harm.

Many of us with multiplicity start out with no idea that we have parts, either we lose time due to amnesia, or experience the world through the hazy confusion of co consciousness. For many of us, the dissociation is highly functional, breaking up information and containing it in ways that help us to manage life, and allowing us to adapt simultaneously to a variety of different environments with very different social requirements. We have found a way of growing and navigating life that works for us, even if we are completely oblivious to it.

I’ve been talking lately about how powerful triggers and anchors can be for people with parts, but it needs to be said that they can also be abused. Even when the multiplicity is hidden or unknown, sometimes abusive people figure out by accident or instinct that certain things will keep a compliant part out, or trigger a part who discredits themselves to other people. They may not interprete these things using a ‘multiple’ framework and language, but they stumble across triggers and anchors and use them to their own ends. It’s worth mentioning that these factors are at play for people who don’t have parts too, in that all people are vulnerable to things like finding they are more submissive in certain settings, or more likely to act out when treated certain ways. But it can be devastating when dissociative barriers prevent a person from being able to access memories or skill sets to help them protect themselves. This can be the catastrophic downside to multiplicity as a protective mechanism.

Sometimes harm is done with no intent to harm. Triggers may be avoided or used unintentionally by family or friends who tell a person with parts that  ‘You’re not yourself today’ when they switch to a part their family doesn’t get along with. Sometimes others may learn to fear certain triggers such as what happens when the person gets drunk, or listens to certain music, and switches to a part who’s disoriented or aggressive. People with parts can find themselves under a constant subtle pressure to keep out the parts other people like, get along with, or find easy to manage. Other parts can spend many years trapped inside and be frozen at certain stages of development, never getting the chance to hone crucial social skills, tell their stories, use their talents, or connect empathically with other people. This can leave systems extremely uneven in their ability to function and their experience and expectations of the world. Systems can easily become polarised into the compliant parts and rebellious parts. Sometimes therapy can also play into this dynamic where the parts that the therapist relates to or finds easiest to get along with get to have key roles, while other parts are excluded, supressed, ‘fused’, ‘integrated’, put into lockdown, or convinced they are no longer needed and have no further role to play in life. (that’s not to suggest that these approaches are never useful or necessary)

Self awareness can make a huge difference for people with parts. Understanding that you have parts can be tremendously helpful in buffering the issues that multiples in a non-multiple world can have. Whether it’s someone saying that they like this artwork/outfit/meal better than that one – and inadvertently hurting the feelings of the part who worked on the less well received item, the frustration of losing skills and abilities as parts surface and go away again, or simply the phenomenal daily challenges posed by differences between parts as large as gender or sexual orientation, or as seemingly small as the part who does the grocery shopping love oranges and yoghurt and never buys any bread even though the rest of the parts love toast for breakfast and never eat oranges. Knowing why you have conversations in your head, 4 different opinions about almost everything, why you can be feeling happy, sad, bored, and curious all at the same time, or for that matter, hot, cold, scared, and sleepy… can help make a lot of sense of what has just been one more bizarre and confusing experience.

However, awareness alone is not sufficient for protection. Awareness of multiplicity can make you vulnerable through exposure to the massive stigma about these experiences. People’s relationships and jobs can be at risk if they are outed. There’s also a vulnerability in inheriting a whole stack of rigid ideas about what it means to multiple, for example when people are told that their systems must have a certain number or type of parts, or that they will inevitably remember horrific abuse, or that therapy is essential, long term, and extraordinarily painful. People can be vulnerable due to the language of symptoms where the number of parts, degree of dissociation, or level of incapacity is used as a measure for the severity of pain and worthiness of support of the person. People can also be vulnerable when multiple communities behave in alienating ways, such as being overly concerned with ‘faked DID’. Sometimes people find that their systems are overly fluid, or overly rigid and fixed in ways that make growth and adapting to new circumstances extremely difficult. The dissociation can limit the healing effect of positive life circumstances and loving relationships.

There can also be vulnerabilities in other people being aware of a person’s multiplicity. Sometimes abusive people use multiplicity against a person. This can happen with children who are being poorly treated, but adults can also be vulnerable. For example, people with parts who are in abusive relationships can have horrific experiences such as having a young part who has previously been abused being triggered during sex for the titillation of their partner. Multiplicity can be magnificent and protective, but it can also be devastatingly vulnerable. People with parts who find that their multiplicity is not effective to protect them from abuse or trauma may become extremely fluid, chaotic, poly-fragmented, or build massive numbers of parts. (this is not the only reason systems can function in these ways!) Systems that have experienced this kind of harm can be like labyrinths designed to confuse and hide essential information from an abuser or series of abusers who have discovered how to use the dissociation to their own advantage. Often this design also confuses therapists and the person with parts, and can frighten and overwhelm those who are seeking to understand, map, and make sense of themselves. Realising that confusion is the intention and that it serves a very important purpose can be a valuable first step in learning to love an inner labyrinth. Understanding triggers and anchors and knowing how to use them can be a powerful way of ensuring that abusive people cannot use them against you.

Known multiplicity can also be interpreted in ways that are harmful. For example, some people are put through traumatic exorcisms to get rid of parts who have been understood as spirits or demons. People with parts who have different gender identities have accessed trans support services that haven’t considered multiplicity as a possibility and have unintentionally suppressed and rejected all the parts of one gender. Multiplicity can be misdiagnosed and mistreated, for example if it’s seen as schizophrenia treatment may concentrate on keeping the person lucid and stopping the voices via medication – which can translate to tranquilising the person until they can’t hear their parts, and trying to prevent switching. Some people have accessed therapy that has interpreted and navigated their multiplicity in ways that they later come to believe was deeply harmful.

Multiplicity can also make you more vulnerable alienation, loneliness, and self hate. These are simply things that everyone without a peer group is vulnerable to. For people who don’t have parts, there’s often something strange and fascinating about the idea. What it can be difficult to understand is just how strange people without parts can seem to those of us who have them. This is our ‘normal’, and we can feel very alien and alone in the world. This can be compounded by the issue of masks. Many people wear social masks, the face they present to the world. People with parts are often thought to be wearing masks and then revealing their ‘true’ self when they switch. Pre diagnosis, everyone in my life had a different idea of who Sarah really was, and we ourselves couldn’t figure out who we ‘really’ were. Different people formed bonds with different parts, and most of my relationships were one-part bonds only. Switching caused chaos. I would invite friends over to visit, then switch later on and be confused and frustrated that people who didn’t seem to particularly like me were on my doorstep. They, on the other hand, experienced me as moody, unpredictable, and very strange. A freak. I also had big issues with connecting with other people’s buried parts – not the dissociative kind, but the kind we all have. For example, someone who presents themselves to the world as together and successful may have a hidden part that is lost, afraid, and steeped in grief. For some of us with parts, we are used to hearing and feeling things beneath the surface and we accidentally interact with and draw out the hidden parts of other people in ways they can find both deeply moving and intensely uncomfortable. Certainly not necessarily conducive to stable relationships!

It’s hard to be the only one of your kind. This is why bridging the Gap and finding points of connection and similarity common to all people can be so desperately important! It’s also why connections with peers and peer workers are crucial. Everyone needs a space in which the way they function in the world is ‘normal’ and for a few hours they don’t have to explain everything in full, because people get it. Being the only deaf person, the only kid with two Dads, the only scholarship student can be hard. Diverse communities help, and contact with other people who share your experiences also help. However multiple/multiple relationships can also be fraught, while there’s a common language and understanding, there’s also the complexity of two systems and a different type of relationship between each possible pair of parts who are out, as well as the loss and grief of forming connections with parts who go away or are supressed or overruled by other system members. Friendships between multiples can be wonderful but also fragile.

Multiplicity can be life saving. It can help people to contain, protect, and adapt. It can also be a difference that leaves people at greater risk of abuse, exploitation, and isolation. Here lies a tension that many of us peer workers with parts are struggling to engage. We need to hear that multiplicity can be healthy and useful, that there’s hope and that the illness model isn’t the only story that can be told. But it’s the vulnerability of multiplicity that drives us, the knowledge that people are struggling and suffering and being harmed that makes us want to speak out and create resources and healthy communities. The less stigma people encounter, the easier the path to healthy multiplicity is. (this path doesn’t exclude the possibility of integration or fusion) We’re often sold an idea of multiplicity that is about being broken, profoundly alienated from self, where the multiplicity is conflated with the trauma history in a way that makes it difficult to think creatively and respond with enthusiasm to the task of understanding, accepting, and making a wonderful life with yourselves. We don’t have to pretend that multiplicity is any easier than it is, nor do we have to choose only one way to understand it. Like anything in life, and like any kind of difference, there’s deep complexity and ambiguity in our experiences. We need the freedom to be able to engage those honestly, and we need opportunities to be able to combine our collective wisdom and help to reduce some of these vulnerabilities for people.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

Using Anchors to manage Triggers – Multiplicity

I’ve been writing about triggers lately. This post is specifically about how triggers can affect parts for people with multiplicity, it builds on the information I’ve already shared in

  1. Managing Triggers – an overview of how triggers work and many different approaches to managing them
  2. Mental Health needs better PR – the risks and benefits of the different ways we think about triggers and why we want to manage them
  3. Using Anchors to Manage Triggers – exploring how anchors work and can be used to help with triggers around trauma, anxiety, and other distress

Sometimes parts get stuck, inside or outside, and this can cause problems. Sometimes a part may stop coming out when their trigger to do so disappears, and this can be a terrible loss. Perhaps a child part only came out around a favourite aunt who has passed away. Perhaps a quiet, studious part only came out at uni, and now that you’ve finished the course that part has gone missing. I have one who only comes out at night, down the beach. Wounded and different they have retreated from all the rest of our lives and it is moonlight and solitude that calls their name. When I was originally diagnosed and my shrink was hoping to make contact with some of these parts, we told them with despair that a counselling office was not their world and I had no idea how to get them here, or even if that was a good idea. The shrink was likewise baffled about how to engage with parts who only came out at school, or during storms, or in candlelight.

Two things lay beneath this dilemma – a fundamental question of the purpose and direction of therapy – was it about us making ourselves function and presentable in the shrink’s world, or about the shrink being able to follow us into our own… or some kind of collaboration and bridging of this Gap? Was it about illness or a Grand Adventure? The other was simply the lack of awareness on both our and the shrink’s part that triggers can be changed and wielded deliberately.

Sometimes it helps to change the triggers that call parts out. I have one in particular who responds to threat and manages violence. Parts with roles like this can become restless and destructive when things start to improve in your life, because they are inadvertently being written out of the life. As this role is needed less and less, they come out infrequently, sometimes inappropriately, and the rest of the system responds with frustration instead of gratitude. Heroes of the old regime, these parts find there’s no room for them in the new world order. Changing the trigger that calls them out can be a powerful place to start changing or expanding their role to have more life in it.

This can be a simple matter of forming a new association with being out. Every time they are out, to have a new chosen trigger present – someone calling their name, a piece of music, a bracelet, bare feet on grass, pink nail polish. It needs to be something they want and have chosen, something that resonates with them. A trigger that doesn’t evoke a response of some kind, an emotion, a feeling in the body, a memory, a sense of connection – is no trigger at all. In order to work as a trigger, it must evoke something, it must connect with something that is unique to this part and in some way represents them. Over time this trigger becomes more connected to the experience of being out. Once this link has been made, it can start to become strong enough to be used as an anchor, something that can be used to call them out and invite them to be present.

For my system there’s a sense of distance inside, sometimes some parts are close to the surface and easy to call out, while others are far out in the deeps and beyond any call. Some parts always respond to their triggers, others are unpredictable. Each system is unique, and the process is often more organic than mechanical.

Sometimes parts have a difficult time staying present when they want and need to. It might be that other parts are being triggered out, or that they habitually go away inside under certain types of stress. Sometimes some parts just seem to have a tenuous grasp on the moment, in the body, in the world. They are more like smoke on the wind than a plant in the earth. Anchors can help parts to stay present in times when switching would be dangerous, traumatic, or inappropriate such as driving, sex, or delivering a presentation at work. Clothes are an anchor my system often uses to help to keep a part present. If this part has her boots on, or that part her pearls, it’s much easier for them to stay present. Music is another powerful one, and it can have a lingering effect. An hour of listening to P!nk at high volume before leaving the house can be the anchor a part needs to stay present through the morning. Or the right music on the radio in the car can stop a child part switching out when we’re driving.

We were in some training a while ago and struggling badly. The facilitation was extremely poor, and most days at least one student became distressed by bullying behaviour. I spent a lot of time following people into toilets to offer comfort, and biting my lip during lectures. The group dynamics were being encouraged in such a poor direction that distressed students were maligned as ‘low functioning’ and probably unsuitable for study, rather than offered support. Each day that went by I became more enraged. The part who handles threats was constantly triggered, but their expertise is physical threat – violence, sexual assault and the like. This was an incredibly inappropriate environment for them because none of their skills were useful here. They could not physically respond, even by screaming, to the increasing sense of being trapped and forced to watch as people were hurt. In fact all their responses; their obvious pain, their supressed anger, their capacity for action, played against us in this setting. We lacked credibility when we responded this way, tongue tied, vehement, and desperate to escape.

It took a lot of thought but we finally were able to come up with a better approach. A different part who could handle this kind of ‘threat’ that was psychological and subtle rather than physical and overt. Someone who wasn’t afraid and therefore wasn’t sitting at a desk with their adrenaline thrumming. Someone who could speak up without anger in their voice, and who therefore couldn’t be told off for being rude. Someone who could laugh and break tension while speaking our truths. Once we figured this out, we changed which clothes and makeup we wore to the classes, changed where we sat and how we engaged. It was still a deeply unpleasant experience, like being a participant in a social experiment about power. We still had some troubles with the furious part being triggered out. But we had a better approach and were able to finish the course without being reprimanded for any behaviour, without self harming to cope, and without becoming compliant and submissive to the bully. Anchors can be powerful.

Sometimes they can be also be used against us in ways that hurt us. Multiplicity sometimes makes us more vulnerable.

Awesome quote – Grand adventure (or, my philosophy of multiplicity in a nutshell)

I’ve told this story before, but it’s worth giving it’s own post to. A few years ago, I was seeing a therapist I was not getting along with at all. My life was chaotic, lonely, and very painful. I was scared and confused about my diagnosis of DID. I felt trapped between a therapeutic approach that felt deeply wrong for me (such as getting rid of parts deemed by the therapist to be either too damaged, or too hostile to be integrated) and all the books I’d read that said without therapy I would never recover. Caught in this dilemma, I called Lifeline.

By sheer luck, I spoke with a guy who clearly knew a lot about DID. He listened very attentively as I explained my situation and how distressing I was finding it. He drew out of me my inarticulate intuition that this therapy was not the right place for me. Then he framed what I was feeling in a neat summary that has stayed with me ever since.

Just because you’re split, doesn’t mean everyone else is whole. You can choose to engage this as an illness, or you can go on a grand adventure of self discovery.

That’s it – my philosophy of multiplicity in a nutshell. I don’t mean that people who find a medical model approach to their multiplicity can’t also be on grand adventures of self discovery! But that for me, at that time, these were different options. I couldn’t have both, not with this therapist. So I took a risk that all the books were wrong. I started to wonder how, if we only ever studied those who were formally diagnosed with DID and stayed in therapy, we could possibly know that people never recovered from, or lived with DID successfully without therapy? I set up this idea of The Grand Adventure as my guiding star, my compass that let me know when I was on the right path or not. When a choice would take me further away from it, I didn’t take it. I kept to the paths that moved me closer to treating my life, and my multiplicity, as a grand adventure. Adventure can be painful, even agonising, but it is also awe inspiring, beautiful, profound, and challenging. It takes you places you couldn’t have dreamed of. It’s a very long way from my original plans to be the perfect patient in therapy and ‘heal’ as quickly as possible to get on with my life. And it’s served me well. I’m not waiting for therapy to finish, or integration, or fusion, or to feel like I’ve got over my childhood, to begin living. My life is a grand adventure. Some of it hurts terribly. Some of it is breathtaking. All of it is worthwhile.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

Power shifts in a multiple system

I gave a couple of talks recently about supporting people through a dissociative crisis (more info and resources here). Some of this talk was focused on supporting people who have parts, and explored some common crisis points for people with parts. One of these I described as ‘civil war’ – ie major power shifts and fights between different parts.

Many people with parts or with DID are a mix of aware and unaware of other parts. An internal war like this can be very similar to the kind of massive conflict that everyone can also go through when there’s a lot of stress and contradictory frameworks for how to respond to it. Sometimes the fighting is as clear and overt as Paul hates the way Sky is running things and her choices about friends or career, and has decided he would do a better job. Sometimes the struggle is underground, messy and confusing and conflicted. When parts are at war with each other they can do a pretty effective job of tying the shoelaces of every other part so that no one can function very well and no one gets any needs met. If this is intense and continues for a long time, profound distrust, loathing, terror, confusion, and dysfunction can result. On the other hand, if one or two parts are more powerful and able to dominate, they can effectively become dictators to the rest of the system. If they are compassionate and caring of weaker and more vulnerable parts their leadership can create great stability and peace. If they are brutal and uncaring awful abuses can occur.

Power is an interesting concept to define in regards to how a multiple system works. It can mean different things. Sometimes having the most life skills gives a part power because all other parts will have to allow a switch at some point to be able to manage life. Sometimes it can be having the ability to stay ‘out’ in the body the longest. Sometimes it’s force of personality, or the capacity to be heard by all the other parts as a voice and so influence them, or the ability to chose which parts can come out and when, or being the most frightening part, or being a part most other parts trust and put faith in, or having a lot of environmental triggers that bring a part out often, or getting along the best with the therapist or other people with power in their world, or having been around a long time, and so on. Some forms of power are the same kinds of power we see in any group of people such as the person who knows a great deal and who’s opinions are therefore treated with respect. Some forms of power are quite specific to the way internal multiple communities can work with regards to switching and control over each other.

People with DID have often come through some pretty awful things. Many of us have had little or no experience with healthy communities. Many of us have had little or no experience with the responsible and ethical exercise of power. So it’s no surprise that sometimes our internal communities are structured in ways that partly work and partly cause harm. If all our role models for strength, leadership, and power were abusive, ineffectual, unaware, or disconnected, it’s a challenge for parts to use their strength and power in ways that are connected, insightful, and empathic. If all our experience of group dynamics is that the strongest get their needs met while the weaker ones struggle, the really vulnerable get humiliated and tortured, and the alienated ones rebel, of course we find similar dynamics in our own systems. One of the challenges of being part of a multiple system is to help the structure become one that brings out the best in each part. Many multiples are a complex combination of some great internal dynamics and some awful. The more awful the dynamics often the more intense the suffering, and sometimes the more severe the dysfunction.

In speaking of my own system, I’ve been through a number of major power shifts, some of which were extremely distressing and some of which have been brilliantly helpful. One of the first civil wars for us was when we were 10. 10 was a bad year. People died. Pets ran away and didn’t come home. We moved house. More pets died. Sarah, ie all of us, crashed. The rather fragile sense of emotional security we’d managed to develop was completely swept away. Death bowled us over like a flash flood through a house of sticks. We became paranoid and suicidal. We started self harming in a creative variety of ways. We decided that we could no longer cope with bullying and loneliness at school and did whatever it took to be ill enough to not have to attend. Chronic, severe tonsillitis led to recurrent hospitalisations, tonsillectomy, and severe secondary infections as our immune system struggled. Nightmares became intense, often we would be sleepless and walk through the house at nights checking on sleeping family members to make sure they had not died. We developed elaborate plans for fighting, restraining, or poisoning possible home intruders who might try to kill a family member. In short, it was a catastrophic collapse of the approaches we had been using to navigate life until then. Crisis.

War ensured. Two primary powerful parts with completely different frameworks tore everyone to pieces in a tug of war over who’s approach was best. One of the parts was primarily concerned with ethics and moral behaviour. She’d been educated in sunday school in a deeply unbalanced ‘turn the other cheek’ way where love, self sacrifice, self hate, and shame were deeply entangled. She was also highly empathic and intelligent and understood that surviving was more than a bodily thing, it was about remaining recognisably human. Her deepest fear was making life choices that meant she could no longer have respect for herself as a person. The other part was primarily concerned with survival. She was lonely and disconnected and made choices in the absence of grounding relationships. She had a pragmatic approach to philosophical challenges such as ‘is it better to be a dead pacifist or a live, lapsed pacifist’ and was unhesitating in responding to violence, deprivation, or abuse rapidly and without concerning herself with ethical frameworks to understand or justify her choices. She could stand up to any authority figure if she believed they were wrong on the basis of gut instinct, and either take punishment or run from it. Her deepest fear was death or being trapped.

We have since come to understand that these very different perspectives are both vital. They balance each other and are both needed. At the time however, all hell broke loose as we began to shift from being ruled by twisted ethics to being ruled by anything goes if it helps us survive. We radically changed our sense of what was acceptable behaviour, for example, parts began stealing, while other parts became suicidal with shame about the stealing which they had only the vaguest and most confusing of senses was not actually being done by them. The brain was a battleground while the body was under assault. The head noise was unbearable, and the sense of disconnection not only from peers or family, but from all other humans, became profound.

TW for religious content

We had terrifying experiences of co-consciousness and became secretly convinced that we were possessed by the devil. On occasions we’d lock ourselves in the bathroom and stand in front of the mirror and watch the switching happen, where the face was the same but the eyes were no longer my eyes, and try to work out how something that felt so profound internally as a switch could make so little visible change from outside. Some parts developed a terror of the mirror and became convinced that another girl lived in it and pretended to be us. We had a psychotic fear that if she walked out of the frame first we would be trapped within the mirror as a reflection and she would inhabit our life. Mirrors became fascinating and terrifying daily encounters with something deeply confusing about ourselves we had no language to explain. Religious experiences within a pentecostal Christian church deepened beliefs of possession and demonic power, and terror that we could not be cured, were personally directly responsible for all suffering and evil in the world and the crucifixion of god, and were beyond redemption. Self harm and painful medical experiences served as self punishment and torture for being evil, and helped to keep suicide at bay. Other parts took on nihilistic beliefs instead that made them suicidally depressed.

End TW

This particular war settled when the twisted ethics part won the upper hand again. A number of things led to this, intense experiences of shame, punishment, and a particular conversation with an adult who was desperately important to her who told her that due to her behaviour they no longer believed that she loved them, and she would have to work hard to be obedient and good enough to prove this to them. As this spoke directly to her worst fears she gathered all her strength in a desperate effort for dominance and won. Life returned to the profound dark/light split of the compliant and rebellious who operated independently and knew little of each other. Stable, but remaining profoundly unhappy, different parts gathering various symptoms of a person in a state of extreme distress, and chronically suicidal.

As an example of a different kind of power shift, we once found ourselves homeless and on the run from an abusive relationship. The part who had been running most of the day to day life was exhausted, broken hearted, and suffering from intense anxiety. The rest of us were becoming increasingly frustrated with her dominant role considering her incapacity. She was used to her role and did not trust anyone else to be as competent. (for more about this, see Understanding Roles) After a great deal of arguing, the rest of us teamed up and deliberately moved her to a place deep in the system, far from the surface, where she could not be triggered out. This was never intended to be permanent and was not done with malice. Then we proceeded to celebrate our newfound freedom and start learning some new skills and discovering what we liked to do.

After a short time things started to go badly wrong. Burying this part so deep had an unexpected side effect. Dissociative containment between her and the rest of us started to break down. Her intense anxiety began to flood the whole system. Parts who by their confident (some might say cocky) nature, simply don’t experience anxiety started having panic attacks. They were not only inexperienced and ill equipped to handle this, it deeply threatened their sense of sense and was putting the whole system at risk of extreme dysfunction.

We quickly brought the anxious part back out to the front of the system, and containment reasserted itself. But the experience was not wasted. Rather than being angry or frightened at her treatment, she was relieved that we’d proved we could function without her intense over involvement. Like a worn out mother of adult children who had displayed surprising capacity she began to step back more and more and allow other parts to take on more roles and skills. Many other parts were made eager by their taste of a life that was direct and personal rather than vicarious and second hand, and they keenly enjoyed the opportunity to develop and grow with more time out. This power shift was slower, but far more stable and effective.

As this is getting very long, I’ll continue in another post. The third power shift I want to share about was as a result of diagnosis and interacting with the mental health system, and it too has proved to be very stable and useful.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

I am a Tardis

Yesterday was very hard. I woke early because my bedroom retains heat badly and after several days over 40C it was a sweat box this morning. I was weeping with frustration and exhaustion after efforts to rig a temporary screen so I could keep the window open overnight while Zoe was indoors (she destroys it when she’s outdoors) and to drag my small but awkward portable fan into the room, followed by a cold shower still left me dripping with sweat and sleepless.

Work was a 7 hour gig which turned out to be incredibly busy. Rose worked it with me and fell into all the traps I struggled with at first in this line of work, not stretching or taking enough breaks or moving her injured leg around often enough. By the end of the day we were both sitting in the car park in horrible pain and completely exhausted.
Some of the parents were depressingly scary and aggressive with their kids, and the last guy in my line, who’s kid I’m painting after my finish time, unpaid, because they had been in the line, laughs at me when I wince in pain and jibes about how ‘hard’ a job where you sit around all day must be.

Years ago during a time of crisis in my life, pre diagnosis with DID, I can clearly recall one of us saying to the rest of the parts – any of you who will not survive what is going to happen over the next few months, go. Hide in burrows and caves. Come back later. I’ll get us through this. At the time it made little sense to me, but sure enough all our inner kids and more vulnerable or hopeful and gentle parts disappeared for a long time, and severe dissociation descended.

Fast forward to the small hours of the morning now, several intense and distressing conversations with no resolution later and my head is finally almost calm. There’s been screaming and weeping and now a kind of quiet. No one has hidden in burrows. Things are not all okay yet either. Some of us are holding the fort. Some are deep inside, ships far out at sea where their pain can’t harm. Sometimes all us parts are close together, bunched up tight listening to each others thoughts and watching life over each others shoulders. Sometimes we’re spread far apart. At the moment I feel like there are whole deserts and jungles and oceans between us.

Tonight I am a Tardis, much bigger on the inside.

And so we hope. We hurt, safely. We bring what skills we can to the present, what gentleness this easing of pressure inspires. We drink bitter drinks to ground, lay naked in the dark, surrender to the demands of sleep.

Thoughts about peer work and DID and community

It is incredibly hot here again. It’s currently 42.3C and I feel like my face is melting. Hot weather and I do not get along since I developed fibromyalgia. So I’m home, in front of my little portable air con, preparing for my drive off to Mifsa to give the talk Supporting Someone in a Dissociative Crisis this evening. Apparently I decided the best way to prepare for this would be to spend the day on the net getting into big conversations with people.

I’m getting frustrated again that I can’t blog as much as I want to. I have so many things I want to share, my list of posts to write goes into several pages. I’m still hoping to find time to blog about all the great talks I got to hear from at the World Hearing Voices Congress last month. And I’m often in amazing conversations, taking down quotes to write about later but so rarely get to come back to them. I think part of the problem is that often the topics I’m wanting to write about are big ones – suicide, multiplicity, sexuality and so on – and I really want to do a decent job. Sometimes I let myself just spiel and post, but often, especially if it’s a post that I’m hoping will have useful information in it instead of just a bit of a glimpse into my own thoughts and life – it’s not something I can write in a moment. I need to get several parts to read over it, I try and edit it from very different perspectives, and I try and include links to other information or resources when I’ve found them. That’s not a short process. I wish it was. Or I wish I was paid for writing them so I could more easily carve out time each week for those kinds of posts. Which I guess kind of brings me back to my idea about writing a book…

What do you think? A book is a great thing. You can borrow it from a library or friend. You can pick it up and put it down and carry it around with you. You can underline bits and cross things out and write your own thoughts in the margins. But a blog is good too – it’s always free, especially if you use the net at the local cafe or library. You can even contact the author or write comments underneath. It’s a growing, evolving process, with small bites of information. I like the format, it has a lot going for it.

So, today I was talking online with a friend about internet safety, and scams, and how important it is for people to be aware, and I thought to myself I keep hearing this word awareness. I hear it all the time around the ‘days’ we have like the International Day for the Elimination of Violence against Women or raising awareness about MS, or how to talk with people in wheelchairs without driving them nuts. I have a whole stack of physical and psychiatric stuff going on, and my awesome friends likewise, I still have no hope of remembering everything I’m supposed to be aware of. I find myself wondering if a different approach wouldn’t be more helpful – like a ‘how to engage stuff you don’t know much about in a way that doesn’t drive people crazy’ approach. How to generally be a helpful person open to hearing new things you hadn’t considered instead of trying to be aware of every illness, condition, social concern, and so on.

Isn’t this partly what we’re doing in spaces like Hearing Voices groups – the facilitators don’t have to understand everyone’s different perspective or experience, they are just trying to hold a safe respectful space where everyone can speak for themselves and engage each other… maybe we can support better and more respectful ways of engaging with things we haven’t personally experienced that are easier than massive lists of things to be aware of? Even as someone working to raise awareness of mental health experiences such as multiplicity I think this. Maybe if we work together to create a model for engaging with our diverse communities we can relieve some of the burden of anxiety so many of us feel when we are aware we lack awareness and wind up not engaging or falling over our own feet with stress worrying that we’re being unintentionally wildly offensive or upsetting.

On that note… I read a blog post today where a person with DID is expressing deep frustration with some current ‘awareness raising’ stuff going on over in the UK that they feel falls so far short of the mark that it’s actually worse than the usual ignorance and myths about DID. I felt that Bourbon made some really good points about issues with sensationalism in the media, and misconceptions about how parts can function and overlap. I recommend going over to have a read of it – What is DID? (a response to media campaigns). When Bourbon started talking about their (gender neutral as I’m not sure of pronoun preference) perception of what DID actually is, I was concerned. Here’s a brief quote from the end of the article:

In reality, those with DID feel far from special and intruiging.  A life with DID is actually spent hiding away, keeping yourself as small as possible so you don’t get noticed.  There is often so much fear and pain and confusion coursing around you and the whole system it can feel like you are paralysed.  Of course there are teeny tiny moments when life with DID doesn’t feel THAT BAD, but that can only really be fully appreciated when you take note of the alternative extreme lows.

This is where I feel deeply concerned. I don’t know Bourbon, I’ve read a little of their blog today, some of the earlier posts have been made private but they’ve been writing for awhile and I can see a whole lot of work going into being open and supportive about a life with DID and all the challenges that can pose. It’s always difficult to try and respond as respectfully as possible to someone who’s clearly upset about something that really hurts them, while disagreeing with them. We had a bit of a conversation in the comments before they closed them for a break (which is brilliant, and something I wish I’d thought of with this blog instead of closing the comments entirely for the first 2 years. Although sadly that meant it ate my last reply which was quite long and thought through, sigh). I thought I’d share my thoughts about this here too, because there are some amazing people, like Bourbon, out on the net and in their communities, all trying to raise awareness and share information. And yet so often we make each other uncomfortable in some way, or somehow our stories obscure other people’s stories that are very different. It’s not an easy situation, there’s a lot of effort and goodwill and yet the community as a whole can quickly fracture instead of pulling together.

I was going to just pull a few quotes from our conversation in the comments, but then it seemed like that could be picking and choosing to make things fit my perspective best. So I thought I’d quote the lot instead, although I haven’t run that part Bourbon (as they’ve currently closed the comments and I have no way of contacting them). The comments and blog post are both public and I’ve linked to it so I don’t think that will be a concern. Correct me if I’ve got that wrong!

Sarah:

I get that you are really pissed off and feeling unheard but I was uncomfortable with some of the ways you were presenting DID too. I think for me (as someone with DID) one of the ones I wanted to speak to is your statement that having DID is primarily about suffering, with only tiny moments of relief. That really distresses me. I absolutely get that pain and distress is a HUGE amount of the picture for many, many people, but that doesn’t speak to my experience. I suffer when I’ve been hurt and traumatised, and I’m in terrible pain when things have gone appalling wrong in my life with things like homelessness, but it’s not my DID that makes me suffer. That’s a subtle difference but for me, an important one. When anguish and agony are presented as normal – even inevitable and inescapable daily realities for everyone with DID, that worries me. I think we accidentally set people up for much worse experiences when they don’t hear other stories and ways of thinking about their situation. When we expect suffering we miss opportunities for joy and hope and delight and wonder. I don’t think it has to be this way – and that certainly hasn’t been the story of my own life 

Bourbon:

I’m really pleased for you that your DID doesn’t cause great suffering in your life now and I am sorry that you feel distressed by me pointing out that a lot of DID is pain and confusion. Don’t think I don’t delight in the fact that one of my littles experiences true joy for half an hour when with my therapist, or I am not appreciative of the fact that I have an alter who reacts quickly to external danger from other people. But at the moment, whilst I am engaging in heavy duty trauma therapy, this is not what my DID is primarily about. I experience joy in my life that has nothing to do with my DID – and that is what is important for me. Life outside of a disorder is important to me.

I take your point that educating people with all the negatives/realities of DID MAY set people up for worse experiences in their own lives – but what I am not going to do is exaggerate and ‘liven up’ the positives in the eye of the public at the expense of showing what DID is like for a lot of sufferers. Like I said, there are little moments when life with DID doesn’t feel that bad; and maybe I could have actually given some examples, like I have done above, but that is as far as it goes.

Reality with DID is tough. Yes our attitude can soften the edges (because even a little having fun in therapy can be viewed as a negative to the disorder – who actually WANTS to be in a 26 year old body but behaving like a 5 year old?) but the public doesn’t need to be educated about our attitude. They need to be educated about the facts, the symptoms, the reality. Attitude is a side-line; not a focus.

Sarah:

What you’ve said here is that you’re doing heavy duty trauma work and that is painful as all out. I don’t see that as being about the DID, if you’d been awfully traumatised and didn’t have DID you would still be hurting like hell and having some horrible therapy sessions. For me they are separate things – the experience of being multiple and the experience of having been chronically traumatised. While they can be deeply connected it’s not the DID that is hurting. Reality as someone who has been deeply hurt is tough. That doesn’t haven’t to be reality with DID. Yes there’s confusion and shame and challenges, I’m really not making light of that. But then, there is for all life, however we experience it. Challenges like how to feel alive, how to connect with communities, how to learn more about who we are, these are universal quests and struggles, experienced as much by people with deafness, people from backgrounds with money and power, people whose babies die young, as they are for people with DID – and for people who used to have DID. The specific challenges might be unique but the call to find ways to live well with others and ourselves is the same. So I don’t see this as ‘just’ an attitude. It’s an essential aspect of what it is to be human. When we tell ourselves that suffering is our lot we lose the capacity to engage life in any other way. When we hold up as examples other people who share experiences with us and write off their lives as being primarily about pain we shut down other ways our communities can live.

Years ago, when I was early in the stages of diagnosis, deeply distressed and struggling to find a therapist to work with, I called Lifeline one night. I was in the early stages of working with a new therapist who’s approach I was finding deeply distressing. By luck I spoke with this guy who actually knew something about DID. He encouraged and supported me while I wrestled with this dilemma – keep working with a therapist who was approaching DID in a way that felt completely wrong for me, or go against all the advice I’d read about how you MUST have therapy to heal from DID and walk away knowing it might be months or years before I found another one? He said something to me that has always stayed with me “Just because you’re split, doesn’t mean they’re (other people) whole. You can choose to engage this experience as an illness, or you can go on a grand adventure of self discovery.” (which will of course sometimes also be painful and confronting and so on, like all adventures)

Being invited to think about DID in a different way has been life saving for me, in that I have a life with DID. I don’t think of myself as disordered because I have parts. I don’t think of my parts as symptoms of my illness, which made me fear and resent them. I struggle and suffer at times. I also have amazing and wonderful experiences at times. Playing co-consciously with a 5 year old part was a profoundly moving moment for me, because I’ve spent years getting over my sense of shame and humiliation about having a 5 year old part. So much of what we with DID are wrestling with are things that everyone who has been hurt are wrestling with, and things that everyone who is trying to be human are wrestling with. We don’t have to sell people an idea about DID that is about sickness and anguish, not to each other and not to the public.

Bourbon:

I understand the distinction you are making. I really do. I first started blogging on here saying that I was going to refuse to call it dissociative identity disorder because it isn’t a disorder. But since realising the turmoil me and my system are in day to day then I realise how much of a disorder it is. It seems to me your experience of multiplicity isn’t just about trauma. Fantastic. You’ve built a life outside of that. But my DID is all about trauma. We are riddled with it. My system operates by way of abuse. What I mean by that is abuse is still going on, internally because that is what we grew up believing was the norm. It sounds like you are so much further along your healing that you have made peace with your past and become close to your system. I’m young and only two years into my diagnosis. But I am in therapy with an excellent therapist who has been working with DID for twenty years and one who has written books on the subject. So maybe I will find a way to live with DID in joy like you have. Or maybe I will integrate and be cured of this disorder. Who knows where life will take us? Personally, I hope I’m integrated. But we all know, well all DID’ers do, that is a choice.

I appreciate your words. You are very uplifting and hopeful and maybe this post does need a bit of that so thank you for dropping some with us. It hasn’t gone to waste.

Moral of the story: there are positives and negatives to everything (however large or slight) and BOTH need to be expressed if you are wanting to educate the public about DID to give a fair picture.

This is such a thought provoking conversation for me and something I’ve given a lot of consideration to over the years. I really appreciated the way Bourbon heard me out and didn’t get defensive. I have such respect for that willingness to engage with opinions and difference. It’s not easy, especially when you’re already feeling hurt and unheard yourself. I see so much divisiveness in so many communities I care about. I’m coming to the conclusion that it is such a huge challenge to create and be part of healthy communities with diverse members because most of us have never experienced that or even seen it before. Many of the people I come across in my peer work are being abused or belittled by their communities, they are at the bottom of their family and friend social heirachies, low ranking at work or unable to work, isolated from people like themselves and suffering from the impacts of all of these things such as low self esteem, depression, and self hate – all of which are seen as personal deficits by the mental health system rather that social issues. I’m reading an amazing book The Still Point of the Turning World, written by Emily Rapp about her experiences having a terminally ill young child. She talks about her rage at being dehumanised and having her experience, and her son, treated as a case study, as an example of the worst possible thing that can happen to someone, something to make other people feel better about their own lives. She talks about life as a Dragon Mother, her description of the unique agony and priviledge of loving and caring for a dying child. And I think again of The Gap, of how many gaps there are. Of a world of people who are living and hurting, who are divided rather than united by those most human of experiences – pain, suffering, loss, loneliness. 

Then I think about how fractious so many of communities of hurting people are. Love and acceptance start to be treated as limited resources that everyone’s in competition over. The division of people into the camps – people with problems/people who can help – dehumaises both groups as the helpers burn out and the ones with ‘problems’ never have the opportunity to recognise their own gifts of love and compassion. I see a lot of these kind of fractured communities, corporations that work on what is effectively a class structure – with separate facilities, entrances, work and rest areas for each level of client/volunteer/worker/management/upper management and strict rules about how each class is to engage those ‘above or below’ their own. I am at times contacted by hurt and angry members of other DID support groups who want to inform me that a certain member has been removed from their network for ‘faking’ DID or not having ‘real’ DID. I see a lot of hurt, angry, lonely people desperate for someone to reach out to them who alienate everyone who tries to. I keep coming back to an idea – that those of us who are alienated, alienate. Having experienced abusive communities, we reject new ones, or we rebuild new ones with the same imbalances and flaws we’re familiar with and just exchange the roles. It’s such a risk for everyone who feels hurt and disconnected, including me.

Then I think about the challenges of the entire issue of how we as a culture engage with diversity and disability. I’ve written before about whether mental illness is a disability. I drew upon two other communities to explore some of my ideas – that of the Deaf community and that Autie/Aspie communities. I have had brushes but not extensive contact with either groups so my ideas may be uninformed and ignorant – but that’s partly my point – the impressions those of us who have little contact with the communities develop are based party on the most vocal peers who have engagement with the media (and partly on the media itself but that’s another post). So, in this conversation with Bourbon, am I the equivalent of a person with a disability who is not suffering because of it, accidentally drowning out the voice of a more vulnerable person who IS suffering and who desperately needs better supports and resources?

I’ve wrestled with many of these things on this blog – the tension in trying to be seen as a whole person in The Disability Tango. Challenging conventional and sanitised stories of recovery in Recovery is not a one-way street. The risks and usefulness of using labels to describe behaviour and vulnerabilities in Labels – helpful or harmful? About my ambivalence about the way mental illness tangles good and bad experiences together and the way mental health is presented as being ‘normal’ in Mental health needs better PR. I’ve also done my own getting really angry about the limitations of diagnosis and how DID is understood and presented such as Introducing DID brochure and unplanned rant.

So, what is my role? What is a responsible way to present DID? How do I make sure that the voice I have is being put the best possible use? How do we build diversity into the stories we tell about conditions and experiences? I do a few things already – such as whenever I give a talk about DID or dissociation or hearing voices (and so on, or facilitate a group) I love to present with another peer worker whenever I can, and for preference I like to choose someone who has a really different experience from me. I presented at TheMHS with Cary and we deliberately wrote our ‘my story’ experiences to highlight the ways in which we were different (eg. I’ve never been in psych hospital, Cary has had many stays; I find gardening grounding and hate the gym, Cary kills plants by being in the same room with them and runs every morning almost without fail even if she’s injured). I try to write a ‘People with DID are not all the same’ paragraph into every resource I create and explore some of the common differences to reduce the impact that the way my system works has on people’s idea of what ‘normal’ DID is. I love to do as much community consultation as possible when I’m working because so many other people have experiences or ideas I would never have thought of and I learn so much all the time. So that’s a start.

To this other topic – does me talking about DID as if it isn’t all about suffering help or harm other people with DID? As far as my own life goes – it just has to be authentic. I can’t pick an ideal ‘outcome’ and try to pretend my life story speaks to it, anymore than it’s fair to try and force an exhausted and overwhelmed peer worker to try and give messages of hope they can’t currently believe in. All we really have is honesty, as much of it as we are willing to share with each other. And for me, DID is a disability in that it is something about me that is different, for which I need care and support and room to function to the best the way I do. This is a little bit like the difference between creating prosthetic legs that are designed to look as normal as possible and help people fit in and help other people feel comfortable, and designing ones that look and function very differently to a human leg, but allow the person to run marathons. And that’s still coming from a DID is a deficit caused by trauma – model, which doesn’t fit everyone’s experience.

There is profound suffering for many, many people who have DID. The level of stigma for this experience is beyond anything else I have seen in mental health. When a psychologist was in the year long process of diagnosing me, I spent most of that time arguing and trying to convince him I had Borderline Personality Disorder instead. For any of us who know about the extreme prejudice which which many people with BPD and their families are treated by the Mental Health system, this should shock you. I’ve written a little more about this over at the DI page Why are we needed? My people, people like me, are in terrible pain, suffering appalling stigma and discrimination, living in secrecy and fear. Largely ignored and unacknowledged by the wider community and mental health system, people are stuck, in pain, and dying.

So why don’t I equate DID with this suffering? How can I be so indifferent to it? Because correlation is not causation. I do not believe that this anguish is a necessary result of having DID, while at the same time I acknowledge that it is the painful lived experience of many people. A massive amount of this pain is about trauma. Another massive amount of is about stigma and disconnection from community. And the last huge whack of it is about DID systems that are modelled upon dysfunctional communities. This is where my work comes in especially, because the framework we are currently provided to understand DID is, in my opinion, dangerously limited. People are being told they ‘must’ have an inner self helper. People are being told they CANNOT get ‘better’ without 5 years minimum of weekly therapy (and that if they can’t get it they are just screwed). People are being told that having parts means they are sick, that hearing voices means they are sick, that wellness is about being ‘normal’. People are being told that dissociation cannot be cured. People are being told that DID is all about suffering.

We know that there are issues with people living to their labels in DID as in other things. I don’t believe that DID is inherently about suffering, and I don’t believe that people are well served when this is the story we tell. The DID story is deeply tangled with that of suffering but I don’t believe that collapsing the two together helps people. I was utterly incapacitated by these ideas when I was newly diagnosed. I started off very gung-ho once I accepted the diagnosis – I was going to be one of those rare, wonderful patients who did everything right and progressed through therapy at a spectacular rate and was integrated and back studying my psychology degree in a year. I was terrified that most of the DID autobiographies I read ended with people still in a massive amount of pain and unable to work or keep their primary relationships etc. I was tied up in knots by the insistence on a ‘host’ or ‘primary’ or ‘core’ person and the way parts kept getting shuffled into a hierarchy when that felt so so wrong for us. I was scared and alone. I really wished I could talk to other people who had the same things going on, even better to talk to someone else who was maybe a bit further along than I was, maybe a little less scared. I decided to out myself and become a peer worker so that I could try and be that person for other people, to humanise and reduce fear – others’ fear of us, and our fear of ourselves. To some extent, choices I made such as refusing to give out a system map or let anyone know our individual part names was because we now perceived that the standard approach to DID was now the greatest threat to having the kind of life we wanted to lead. Where once that threat was experiences of abuse, it was now the treatment. We grasped onto the lifeline guy’s phrase – ‘A Grand Adventure of Self Discovery’ and used it to navigate every ‘treatment’ offered to us. When ‘trauma recovery’ treatment was more agonising than the original trauma we walked away. When ‘mental health’ was presented as a greyland of limited emotional range and hyprocritical superiority over all the other ‘sick people’ we built our own ideas about health and recovery. When DID was presented as the worst of all possible disorders, impossible to navigate independently, needing extensive treatment from experts, a humiliating, painful, and protracted process of recovery, we asked ourselves is this how we want to spend the next ten years of our life?

What I keep seeing is that when people are supported to find their own paths, instead of being fit into boxes, amazing things happen. I see people who get to have experiences of healthy communities and model their internal communities on those principles – love, fairness, diversity, respect – and these people are not suffering because of their DID. I keep seeing that when people are exposed to ideas about freedom and joy and community, where they are not alone any more, healing and hope can occur. I think that it is extremely important to make room for people who find the psychological model that DID is a mental illness and that they suffer from a disorder, useful and helpful to them. But there are so many people who don’t find that approach helpful, who get hampered by the illness model and can’t find hope or joy or relief from pain when their parts are presented as symptoms of a sickness, that I can’t use this framework in my peer work. Like telling people who’ve had two psychotic episodes they have ‘schizohprenia’ and will suffer from it for the rest of their lives – it’s not only inaccurate it’s such a disservice to the person.

If we struggle against the effects of stigma, if we build better resources and community responses to trauma, if we try to prevent abuse, if we create and model healthy inner and outer communities; I do not believe suffering has to be the lot for people with parts, or that not having parts any more is the only way to not be in pain. Pain is part of our lives, and how we understand it, the stories we tell about it, and the way we respond to pain as communities make all the difference in whether that pain consumes and destroys people, or can become one aspect of lives that are still rich, deep, meaningful, and connected. The same goes for disability, for illness, for trauma, for DID, for anything and everything that opens a Gap and challenges us to find ways of bridging it.

And now I have to run off and give a talk Supporting Someone in a Dissociative Crisis. Wish me luck. 🙂

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

Goals for SA

I’ve gone off to the World Hearing Voices Congress as a burned-out and overwhelmed peer worker. I’ve come home as an activist. It’s an amazing transformation.

The Dissociative Initiative

I (Sarah) am back from the World Hearing Voices Congress in Melbourne, with some new goals, ideas, and supportive people on board. One of the most important of these is a number of people keen to support the development of a Voice Hearing network here in South Australia. Obviously I’m passionate about our DI aims and resources also, which complement the VH network but are also distinct. We are going to have discussions about what we can do and the best format for a new, better supported local network – and how it might be part of many other national and international communities who are also doing work around dissociation, the mad pride movement, alternative paradigms for supporting mental health, social justice, and community development.

Here are the plans for the next weeks and months:

  • Rest, recover, catch up on sleep, look after myself (ongoing!)
  • Write up an article about…

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Fear of the dark

So another sinus infection stakes it’s claim on my face. The locum reckons it’s going bacterial but my enthusiasm to take antibiotics again is negligible. I’m run down and tired and already have thrush so thanks but no thanks! I’ve cancelled work for the next few days as I’m developing signs of a chest infection too. Have to be well enough to drive to Melbourne for the hearing voices congress next week!

Rose has also been sick with gastro, mercifully brief but horribly unpleasant, so we’ve been unhappy comrades in arms for a few days. She’s also been under a lot of badly timed job stress. Yesterday I spent half of it winning medals for being the most useful and supportive girlfriend, and the second half winning medals for being the most overwrought and unhelpful girlfriend. Dammit. Oddly enough when I crashed she rallied in that funky little see-saw turn taking thing couples can do. Thankfully!

My life only tends to work out in small windows before the next really bad thing happens. This makes me pretty anxious and reactive to a whole bunch of triggers suggesting a new crash is about to happen. I once went to see a shrink for help to make new friends. I knew I had DID but wasn’t out about it to anyone, rather was deeply deeply afraid of anyone finding out. I talked with this shrink about how lonely and emotionally unstable I was. We talked about a common painful dynamic for me at the time – having a moment of really good connection with someone, perhaps a new acquaintance, and going home feeling like things are looking up! Excited about my future, really happy with how the conversation went, reassured that I would make new friends. And then the dawning realisation over the next days of weeks that this wasn’t the case. The wonderful day was not the start of a new life, not a sign of good things to come. It was an exception. That friend would be busy for the rest of the year. The acquaintance wouldn’t come back to uni. The compliment from the boss didn’t mean I was going to be rostered on for more shifts.

The shrink advised me to live entirely in the moment. To take everything at face value only and stop hoping that life would get better. It’s the hope that makes you unstable she advised me. Stop thinking about the future. She was right, of course. Her solution was a bit drastic. At the time, without hope that life would get better, I would have killed myself. The instability was painful but worth it for me.

Narrative therapy is a fascinating field I’d love to know more about. A kernel of an idea about it is this : the stories we tell about our lives and who we are are profoundly powerful. In my life two stores compete for my attention. One is a story of hope and acceptance. That how others have hurt me is not my fault. That it is not a failure to be poor, or sick, or hurting. That life can and does get better after awful things have happened, that scars and hearts heal and love and joy live alongside anguish.

The other sorry is darker. That I am broken. Fatally flawed. Doomed. That nothing I can do, not my best efforts, all my strength, all my love, can stop the dark. That nothing works out for me. Life requires risks and my risks send me tumbling into ravines.

This story has weight for me, a lot of evidence behind it. It becomes something I watch for, signs my world is ending again. A dark foreboding. A quiet despair in my heart. So I make plans, wonderful plans for my life. And I have nightmares, where Rose dies, where our child is terminally ill, or abused, where we both end up homeless with little kids in the back seat of the car. The dark eats my dreams. A little voice inside says if you’re thinking of having kids soon, you’ve got a shrinking window in which to kill yourself before you leave them with the burden of a dead mother.

This is horrible and people are often horrified when I talk about it. They try and reassure me that life is better now. But once bad things have happened to you, you know in your bones, they can again. It haunts me. In a weird way it’s a relief when they do happen and I can stop waiting for them, stop being encouraged to believe in an ideology about good things happening to deserving people that I know is mostly an illusion.

That relief reminds of the cycle of domestic violence. You get the slow building tension, then the rage/abuse/violence, then the honeymoon period where everything is wonderful. Then the tension builds again. People get so stressed and exhausted by the tension building stage, the paranoia it inspires, the knowledge that violence is inevitable, that they sometimes deliberately act to trigger it.

So, I’m in a DV cycle with the universe? (Is that what the crisis driven aspect of Borderline Personality Disorder is about?)

Last night, sobbing hysterically as Rose sang to me and rubbed my back, I understood how hard I work to keep believing in hope. Not a pollyana hope, a darker kind of hope. That my life, even with pain, will have meaning. That choices I make count. That I have some power to bring light into my life. That I can build a philosophy that understands loss, death, and failure, so that they wound but do not destroy me. That I can live in today, and dream, and if the sky falls tomorrow I can howl then. Keep building the ideas of failure and tragedy into my world, into my hope, into my love. Keep chasing freedom when the trap closes about me. Get help to hold back the dark. Someone to hold me when the nightmares come.

Tonks has also had a rough day. We took him to the vet this morning to be desexed only to discover that he is a she. She’s now sleeping on a shelf in my studio with her fancy new cone. Poor love.
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Working on my talk about dissociative crisis

I’ve got 20 minutes to talk at the World Hearing Voices Congress about supporting someone through a dissociative crisis. It’s happening in a couple of weeks so I’ve been working on it recently. I met up with Bridges co-facilitator Ben, and we nutted through some ideas until it coalesced into a coherent framework. I love that process. I tend to need to bounce off someone else to think clearly and plan something like this. There’s such a sense of satisfaction about taking the amorphous and ephemeral and being able to find some kind of underlying theme or order to them.

When I asked other people about what they find helpful or not helpful when they have been in a dissociative crisis, I got exactly the answers I was expecting – which is to say, a very high level of contradictory responses. At first this seems hopeless – it’s so much easier to be able to give a straightforward answer – if A, do B. This is the medical model – if infection, give antibiotics. The nature of what helps with dissociative crisis is highly individual, so much so that what will be of great help to one person will make another drastically worse.

But it isn’t hopeless. Many people who have these kinds of experiences are able to be very articulate about what will and won’t work for them. One of the simplest things you can do is just to ask and invite information. If the person is a stranger to you and not able to give you any of that information, there are still many things you can try, within a framework of useful principles such as those of Trauma Informed Care. Having a broad understanding of the kinds of things that people may find useful gives you a bit of focus for a trial-and-error approach with someone in crisis, so I’ll be going into those.

I’m giving this talk free here in SA next week for everyone who can’t attend the conference. Here’s a link to the flyer with all the details. Feel free to share it around, it’s aimed at everyone, staff, people with dissociation, family and friends. You’re welcome to come along. 🙂

Edit: Update, this talk has been postponed due to illness – new dates will be provided soon.

Where does my psychosis come from?

7 weeks ago I had my first adult experience of psychosis. I was extremely fortunate in that I knew what was going on, and was able to find enough strategies to manage it that it passed comparatively quickly. For the next several weeks I felt very vulnerable, on the edge of that place. I felt dissociated, and mildly paranoid. I had a strong feeling of being watched at all times, or of having someone behind me. At times it was stronger than that, the sense that I was standing on the lip of a hole in the fabric of the world. I was looking at reality, but just behind me was a tear into the void, dark and cold and terrifyingly inhabited. I could feel a cold wind on my shoulders.

I was still in a highly sensitive place, where certain things would speak to me in a way I wouldn’t usually experience. At a party a few nights later, a song comes on that has a guttural male voice singing and it’s like that moment in films where the background suddenly seems to zoom into the foreground without displacing it. The sound of the deep voice is reverberating in my body and making my hair stand on end. I go outside where I can’t hear it well. My hair settles back against my skin.

For the first few days I stay in the light, keep all the houselights on all day and night, and do not leave the house after dark. I do not drive, I do not work, I’m just patient. I test how things are developing gently, try turning out a light and wait to see if the hallucinations return. I find that I exist in a twilight state for a few weeks were the dark is mostly empty, but sometimes starting to fill with hallucinations. Being driven home by Rose, I’m watching the sky curiously as night falls, relieved when it’s empty, cautious when things move within it.

A few nights after the episode I’m lying in bed, talking on the phone, and the conversation is becoming increasingly stressful as Rose and I don’t see eye to eye or understand each other. I feel a sense of a charge rising in my body. It reaches mass and my sense of self suddenly dissolves, like a drop of oil onto a vast surface of water. I have no sense of my body, of gravity, of weight. I have no sense of being the right way up or even what way that is. I feel vastly infinite and utterly tiny at the same time. There is a consciousness at the center of a galaxy of stars like dust. I am falling in every direction at the same time. I close my eyes, knowing that I am still only a woman, still lying in bed, speaking on the phone, having an argument with my love. We keep talking. We find a place of connection and common ground. I feel myself come back together, like big bang in reverse, silent and without violence, all the stars gather back into my skin.

Gradually it eases, this sense of being suddenly skinless, on the edge of this world and another one. I’m so fortunate. How many people even know what psychosis is when they have their first experience of it? More than that – know what might help, know that it’s temporary, know that I can survive it? I re read a book I own called Unshrinking Psychosis by John Watkins. I recommend it for anyone seeking to better understand psychosis. Two ideas stand out to me – that there is method and meaning even in madness, and that not all psychosis is a breakdown. Some is a messy restructuring of the mind, a transformative process. Not breakdown but breakthrough. Not indicative of problems or stress or failure, but of growth, process, recovery. This resonates with me.

I also reached out to a mentor who has also experienced psychosis and we went out for coffee. The chance to talk with someone else who has been there – and come through it, sans lifelong complications, diagnosis, medications, and stigma, is such a relief. I ask one question in particular – “I felt so lonely in that experience, was it like that for you?” They tell me – “Lonely is not a strong enough word for the feeling of profound aloneness and alienation.” Yes. That’s how it was for me. They remind me – crisis is nothing more than the interruption of a pattern. For good or for bad.

There are things I understand better now. I understand the tremendous distress of people who’s sense of reality has collapsed when we try to tell them the things they perceive are not real in an attempt to comfort them. This is not reassuring. We are trapped between our psychotic perceptions (which may be terrifying, or not) and an awareness that we are going mad, which is absolutely terrifying. Knowing that the experiences are not real does not stop them happening to us. It’s like being trapped in a nightmare from which you cannot wake. Knowing it is not real does not stop the fear or the horror, in fact the sense of disconnection from everyone else, from the ‘waking world’, to push the metaphor, is terrifying. And we don’t know if we will wake up. So we cannot come to harm physically unless we act upon the psychosis – when the terror was so intense that my skin was literally rippling across my body, the effort it took to stay still and not run – blind with terror, through any obstacle and into any terrain, took everything I had. Even if ‘it’s not real’ means I can’t come to direct physical harm, I can certainly suffer psychological trauma. ‘It’s not real’ reminds me of the dissociative process of a child being sexually abused – not physically harmed, but violated and traumatised, who thinks to themselves ‘If I pretend this isn’t happening it cannot hurt me’. We know that’s not the case, that these experiences impact and change us even if we deny them. The experience of psychosis impacts, changes, and even traumatises us, even if ‘it’s not real’, because experiences that invoke terror, horror, helplessness, and isolation always have the potential to be deeply traumatising. The emphasis on it’s not real, don’t acknowledge it, the focus on getting over it and back to life, sealing off the experience as quickly and completely as possible seems like a highly dissociative process to me.

And there lies a dichotomy in my experience. It was not real, and yet it was real to me. More than that, it had a sense of profound significance and meaning that I am still gently examining. There was a sense for me of the indelibly familiar about an experience that was at the same time, utterly alien and new. Talking with my support people I drew upon many seemingly disconnected threads of my life that all had some link to this experience. I remembered my vivid imagination as a child where I could perceive things that other people did not – particularly at night. Foxes that ran up and down our hallway, soft footfalls on carpet and the brush of coarse fur against my legs, but not the musk of the real animal. The shadows that congregated in our lounge room every night, tall as adults, having meetings, talking among themselves in a murmur of voices that was the soundtrack to all my childhood nights. If disturbed, they would rush as one furious mass to wreak some unnamed horrifying punishment on any child out of bed. Some nights having crept out for a drink of milk I would be trapped in the triangle of light that spilled from the open fridge, waiting for dawn to come so the shadows (which could not move into the light) would go dormant. (waiting for the dawn to come – so many sleepless nights where only dawn soothes me to rest even now) My wild imagination made me stand out as a child, but not so much that I would have received any kind of psychotic diagnosis. I was different but not that different. I wonder sometimes if all children are naturally psychotic – and yet aware of the divide between the real and ‘not real’ that they perceive: imaginary friends, ‘pet tigers’, games. Somehow we lose this with age.

Another link; making connections with younger parts in my system (I have DID) has been a frightening and fascinating process. It has been hard for those of us who are older to permit our inner kids to have time out in our body. For some of us, it’s painful to be misunderstood as being childish. For others, it’s frightening how vulnerable inner children can be, and how lonely it can be to be a child in an adult body. A few months ago a very young part came out to play with a my little pony toy. They ‘flew’ the toy around the room. We were co-conscious for the play. What was absolutely startling was the physical response in our body. It reacted as if we were flying. Muscles tensed and relaxed, electric sensations feathered across skin, with the highs and lows of the flight the stomach flipped like we were in a car going fast into dips and rises on a road. When the adults switched back out, they were blown away to have this glimpse of a child’s world again. Children, or least, my inner children, have an intense empathic bond with toys that allows them to experience what the toy does. It’s outside of anything I have felt as an adult. No wonder children can play for so many hours. No wonder I struggled to not lose this ability myself as a child, playing games with younger and younger children as my peers lost interest in imaginative play.

A few months ago I was playing a game with friends that relies on imagination. Called Beyond Balderdash, you have to quickly invent plausible definitions of words and other cues. I find these quite challenging, not least because being a creative person, I’m expected to be very good at games like this and the pressure interferes with my thinking. For the first couple of questions I wrestled with my brain, trying to come up with original ideas and mostly drawing a blank. The struggle was fruitless, like trying to use a hammer to thread a needle. Then I felt a shift inside me, something wrestling with me and wanting me to get out of the way. I relaxed and let the process unfold. I stopped shaking my brain in frustration, trying to squeeze a creative answer out of it. Suddenly ideas came out of nowhere, easy as reading off notes someone else was handing to me. There was no struggle. My imagination just spoke. I thrashed everyone else at the game, and went to bed that night feeling thoughtful and a bit confused. It almost felt like cheating, the way Eleanor Longden describes her voices giving her the answers to an exam and wondering if that was cheating.

In my arts practice I’ve also been experimenting with something curious. When I’m doing something like painting, for me it’s a very intellectual process of calling to mind the shapes and colours I want to create and then doing my best to get my hand to make them. I’ve noticed at times that while doing this, I can ‘see’ an image on the canvas (or paper, or skin) that I’m painting on. It’s not really there and I know that, but I can still see a faint ghost image of what I’m trying to create. And it’s often different from what was in my head – maybe only in a small way, such as the placement of an eye, but it is different. So sometimes I ignore what I was trying to paint and I paint the image I see instead. Again, it feels oddly like cheating. The strange thing is, it’s surprisingly effortless, and it almost always looks better than what I had been going to do.

I think about sculpturers describing their process as being seeing what is in the stone and setting it free, rather than turning the stone into something. Rather than a quaint turn of phrase, this concept now startles me.

Nightmares that have been so deep, involving, and horrifying that my sleep became a place where I was helpless and tortured. And yet, a sense that in them in something powerful and important that I would be at great loss without. Memories of being so afraid of the dark as a child and young person that there was a sense of being on the edge of running, and that if I ever allowed fear to overwhelm me and started to run there would be no stopping and no safety ever again. An incident as a young person where I briefly hallucinated a nightmare figure when trying to confront my fear of the dark and had a panic attack. The experience of sensory dissociation and trauma so profound that I craved touch to ground me back into my body and sense of self. My desperation to experience psychosis as a highly traumatised young person who could not escape the daily pain of things like chronic bullying and alienation at school. And yet, curiously, I failed, and at the time, reality remained immutable.

Separate and yet connected experiences. Many of them, like threads all leading to a complex tapestry I now seek to understand.

I understand now the rage I felt in some people at the last Hearing Voices conference I attended. At the time I recoiled from it, wanting to walk a gentler path of diplomacy and peacemaking. But, sitting in my bedroom wracked with terror, on the edge of needing crisis support and knowing how profoundly traumatic that ‘support’ would likely be, I felt the terror and fury of someone marked for abuse and helpless to prevent it. The sense of safety of being at the edge of conversations about appropriate supports and responses to psychosis was stripped away. I was no longer a ‘voice of reason’ on the sidelines. I was now naked and vulnerable and under the microscope. The knowledge that simply being honest about my experiences could see my most basic rights taken away from me in the name of protecting me, could see me drugged and locked away, trapped and confined, subjected to solitary confinement, forced into therapy with people who use entirely different frameworks from me, horrified me. The instinct for self preservation said – silence. Secrecy. Be small, quiet, hidden, and run a long way away from the places where people like you are kept under guard, sedated, tied to the bed, given intense directives and advice by every nurse, doctor, and shrink, most of which is contradictory. So instead, I blogged.

I should be able to call a place like ACIS and tell them about my drug allergies and DID and trauma history and explain that I need a quiet place to rest for a few days and just enough sedatives to help me sleep without sending me into liver failure. The liklihood is that I would be abused and ignored as a faker, or committed, dosed on meds I cannot tolerate, and then find myself trapped in hospital in a spiral of drug induced psychosis and forced ‘treatment’. A system that is both over and under responsive to crisis, that has ‘entry and exit’ problems – it’s hard to get into the system and get help, and also hard to get out again. There’s rage in me that this is the ‘help’ available to me – high risk, and likely as traumatic as it is helpful. What I need is Soteria, a place of safety and respect, where people who are neither afraid of me or my experiences hold my hand while I rest, find my feet again, make sense of things, return to my life.

There’s not just chaos and loss here. Psychosis has been like being tipped up into my own subconscious, filled with wonder and stuffed with nightmares that breed in the dark. I refuse to live in fear of my own mind. There’s powerful things here, about life and love and art. If the alternative is the loss of those things, is the ‘flatland’ of a life that does not move me, of art that is forever the imposition of my will upon things around me, instead of a conversation with my own shadow, then I’ll risk a little madness.

When I was a child, my Mother believed fantasy and imagination were powerful and important. Creativity is essential to life. One of her friends believed they were dangerous. Her children were not permitted to watch the films we watched, or to read the books we read. Their play was shaped in ways mine was not. I wondered, after this experience, if they were right. Has being exposed to fantasy made me more vulnerable to losing my grasp on reality? Or has it left me better equipped to navigate my own inner world?

In the hearing voices group I’m involved in here in SA we often talk about our inner reality. Instead of conversations about reality and delusions, we talk about the shared reality and the inner reality. What I experience in psychosis isn’t real. But it is real. It is my reality, drawn from my mind and my life. Full of the promise of connection and art and a deeply felt life, as well as nightmares and terror. Of embracing child parts and making sense of trauma and facing my demons.

I’m back on my feet at the moment. The dark is empty, I can walk through life without music or images speaking into my heart and calling up a flood. I’m scared, and angry, and aware of a new gap between me and people who don’t experience this, and another reason I am vulnerable to stigma and ignorance. I’m also thankful, thoughtful, listening to the world with one ear cocked towards that void. I will go where my heart wills and seek the deep truths of the soul. Fray into stars and become a person again.

Poem – Voices in the Night

I wrote this yesterday, after driving home from a full, wonderful day of Tafe, excitement, and visits with friends. I often crash and become depressed at the end of days like this, this time a conversation happened inside on the drive home and a different part came out instead.

Home, through rain and night, after a day
Bright with people, the suns of their hearts, warm company
My house aches ahead on the road, cold and empty
And I feel the chill in my chest
Heart constricting, streetlamps
Pierce me with white knives
Rain falls like swords, and on the road
Black water pools like mirrors and
the night gathers close around me.I’m afraid
yes
To be alone
don’t be
I’ll catch you falling

It hurts
yes
it’s also beautiful
why does the light have to go?
because this is where the art lives
I love the people, their voices, my voice
I know. I love the silence, the strength in solitude. We walk both worlds.
Will I come back?
always
am I loved?
always
let go, and the fear will ease
yes
burrow down in my heart, 
this dance is mine.

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Countering DID myths – we’re not all the same!

In my recent post Common DID myths, I spieled a stack of common misperceptions I’ve encountered that bug me as a person with DID. It got a lot of interest from people, with the odd misunderstanding or uncertainty about what I DO think about DID. To go through each point alone would be a huge post, but I can counter a bunch of them in easy to handle groups.

If you’re new to the topic of dissociative identity disorder, there’s a great, easy to read introduction here, or a shorter brochure version designed to be an easy place to start when educating other people – you can tailor it to your own experience by sharing the ways it does and doesn’t fit for you. I wrote these a few ago, back when I was starting out on my journey of being a peer worker coming out about having DID myself. Since then, I’ve learned a lot and my perspectives have changed in some ways. These days I’m far more interested in talking about multiplicity (an experience) than DID (a mental illness)… rather the way that that organisations like Intervoice talk about hearing voices instead of schizophrenia. Why? Because it takes the conversation away from the medical model. It moves us away from needing experts to tell us what is going on with ourselves. (not that collaboration with other people isn’t very helpful!) It moves us back into being the expert in our own lives, where our own opinions, experiences, and ideas matter. It stops pathologising all these experiences – did you know that a lot of people hear voices that are not distressing, cause them no harm, and that they have no other symptoms of schizophrenia?

Plenty of people with multiplicity have been diagnosed with DID or DDnos (which is the grab-basket diagnosis for people with major dissociation things going on who don’t quite fit into the diagnostic category of DID) and that’s great, and I work a lot in the mental health system where DID is what we talk about. But for me, it’s important to separate experience from diagnosis, and to remember that not everyone with that experience fits or identifies with the diagnosis! Read more about my thoughts on the relationship between multiplicity and the diagnosis of DID on Introducing DID Brochure and unplanned rant!

One the biggest issues with misunderstandings around multiplicity, as a lot of people pointed out, is the absolutes! Everyone with DID does this, or needs this, or feels this way, or recovers like this… So the first thing I do believe is this:

People with DID are not all the same

There are many spectrums within DID that vary widely from person to person, and also within the same person at different times. Some common ones I’ve come across are:

  • Degree of amnesia – some people have no idea what has happened when another part is out. Some people are aware of things while they are happening, or get updated after they have happened. This can be different at different times – I have a lot more amnesia when I’m stressed. It can also be different for different parts, some may always be aware, some may always be amnesiac within the same system. For more information see what is co-consciousness.
  • Obviousness of switching – for some people it is obvious when they switch, for others it is so subtle that only someone who knew them very well might be able to tell. My switching would be obvious if I allowed it to be a lot of the time, but years of keeping it hidden mean most people do not pick it. Some people are more sensitive to subtle switching than others.
  • Number of parts – this can range from just two, to hundreds or more.
  • Nature of switching – some multiples switch all through the day, others only very occasionally, and some people never switch, but they talk to their parts and hear them in their mind, or see them as people outside of themselves.
  • Degree of internal control over switching – some multiples can chose which part is out, others have no control over this. Sometimes some parts have more control than others, or can set up triggers to deliberately switch – eg. I will wear certain clothes and bring certain foods and smells with me to make sure my researcher stays present during exams.
  • Degree of fluidity – some multiples have very fixed systems with, say, 5 members who have been there for years and have not changed at all in age, self identity, or roles during that time. Others are more fluid, they are difficult to learn about as they are constantly changing with new parts forming and old ones going away. Neither of these is necessarily better than the other – fluidity can be chaotic, but rigidity can prevent growth.
  • Other diagnoses – people with DID may have other physical or mental illnesses which will change how they experience life.
  • Degree of impairment – some people with DID are extremely unwell and struggle to function, perhaps spending a lot of time as inpatients, while others live and work unnoticed in the community, perhaps with no one around them aware of their condition.
  • Degree of separateness between parts – some people’s parts are closer to each other in the sharing of psychological space, they can do things like share tasks in the body (one running the mouth and eyes while another chops food for dinner), merge and blend skills, feel each other’s emotions – eg. a content adult is enjoying their evening, until they start to be disturbed by a growing feeling of anxiety that seems alien to their own mood – because an inner child is distressed by the movie and their feelings are blending across, or influence each other mentally such as giving or taking away words in their mind, showing images to each other, and so on. Other people have parts who are completely separate and share no common psychological space or resources. Both within the same system is possible too.
  • Polyfragmentation – some people with DID have mini systems within their system, or have parts who have themselves split to form parts of their own.
  • Degree of diversity within the system – systems can form with parts who are extremely similar in personality and nature, or extraordinarily different. One system may have 5 parts all called Geoffrey, all somewhat shy, introverted guys who hold different memories and range in age between 35 and 50. Another system may have highly diverse parts who identify at different places across a spectrum of gender, sexual orientation, age, ethnicity, species (some people have parts who identify as being animals, spirits, fae etc), and so on.

DID is about identity – it is therefore extremely individual in the way it presents and is experienced!

This is contrary to all the myths based on absolute assertions, such as

  • People with DID can’t work.
  • Everyone with DID has an inner self helper, an inner protector, an inner wounded child (and so on).
  • People with DID are manipulative.
  • People with DID can never control their switching.

These myths are often perpetuated by people who have had some kind of contact with the multiple community, rather than the set I come across when speaking to people who have never heard of DID. Humans do seem generally to be wired towards absolutes, and you’ll find myths based on absolutes abound in most areas of human endeavour. All lesbians are vegetarians, all Indians like cricket, all domestic cats hate water. They are true some of the time, or even lots of the time, but they do not capture everyone’s experiences.

What particularly frustrates me is that so many of these myths are embedded in our resources. Throughout many of the books about DID, and the frameworks about working with DID given to us by the ‘experts’ are absolutes. These people should know better. I’m sick to the teeth of reading books that tell me things like all people with DID have an inner self helper (a very useful type of part who knows a lot about everyone in the system). What they actually mean is all people with DID I’ve worked with have an inner self helper or, if I’m being particularly cynical; having absolutes makes me less anxious about working with people so I strongly encourage all my clients to present their DID to me in a way I’m comfortable with. That is harsh – as people we are often unaware that our absolutes don’t include someone until that someone tells us. The problem is that when a whole stack of people agree on an absolute like this, it creates a culture where people who don’t fit are not invited to share their experience. If that culture becomes rigid and deeply embedded, then people who don’t fit will be ignored and excluded even when they do.

I get angry about this because I work with too many people who are stressed and scared that they don’t seem to be fitting the frameworks they’re reading about or that their therapist is working from. Frameworks are really valuable!! They give us direction when we feel lost and hope when we feel overwhelmed. But I believe that holding any framework too tightly, or trying to force a framework into a situation or onto a person when it isn’t fitting and when it’s creating instead of alleviating stress is wrong and harmful! Some people don’t get stressed, they just exit the supports. They maintain their own sense of identity and truth, alienated from the community and unable to access the services if they ever do struggle. This is not a good thing.

Lastly, I think some of these myths about absolutes are basically Black-swan fallacies. “Every swan I’ve ever seen is white; therefore; there are no black swans”. I read a lot of these in the literature. All DID is caused by trauma. All DID is formed before the age of (pick one) 10, 8, 7, 5, 4, 2. All people with DID need extensive therapy. People with DID never spontaneously integrate. These are based on the experts not having witnessed anything else – but that does not mean that anything else isn’t possible. In fact, considering that you are not permitted to self identify as having DID (because that is self diagnosis and therefore lacks validity, a claim I’d be more comfortable with if I believed any form of diagnosis had much in the way of validity), then research is never going to include people who haven’t had contact with the mental health system, so there is actually no way to hear about things like people living with DID who don’t use therapy. In some cases, the limited way the diagnosis of DID has been constructed contributes to these fallacies – for example there’s a case study in Trauma and Recovery by Judith Herman (Chapter 4, The Syndrome of Chronic Trauma) about a woman who was a political prisoner, who describes a degree of internal splitting as an adult – “My second name is Rose, and I’ve always hated the name. Sometimes I was Rose speaking to Elaine, and sometimes I was Elaine speaking to Rose. I felt that the Elaine part of me was the stronger part, while Rose was the person I despised. She was the weak one… Elaine could handle it.” I’m not saying Elaine developed DID, but this experience of parts, some degree of multiplicity, gets excluded from conversations about DID, and I think we need these.

These types fallacies are being exposed in the field of psychosis as space has been made for more people to join the conversation. So much of what we think we know about hearing voices is based upon the experiences of people within our mental health systems. Many people who hear positive, helpful voices or only briefly hear voices do not tell anyone. Why? Because of absolutes such as ‘everyone who hears voices is mentally ill’. They’re not invited to the party. If they do turn up, they’re offered a label, a diagnosis, a straightjacket, and all their thoughts and ideas from here on out are delusional, unless they agree with their treating doctor, in which case they’re insightful. Through the work of mental health activists – both of the peer and expert kind, new parties have been created where people get invited to share and amazing things are being learned – like LOTS of people hear voices, many voices are not distressing, some voices only become distressing when people are counselled not to listen to them, and that different people find different approaches best.

If we keep talking about DID and multiplicity using absolutes we are excluding so much of the diverse experience and wisdom of our own members. There IS common ground – people with DID have parts – and generalisations can be useful: people with DID often get frustrated about having to explain our condition to everyone, people with DID feel scared and isolated when we don’t know anyone else with DID, people with DID want to be believed and accepted. I believe that people with DID are a highly diverse community, with many different experiences, ideas, understandings, and ways to live life most fully.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

Common DID myths

I was asked today by email if I’ve encountered any common misconceptions about Dissociative Identity Disorder (DID). Where to start I wonder?? Here’s my reply:

  • We’re all serial killers.
  • We’re all dangerous.
  • We cannot be trusted.
  • We are liars.
  • We are attention seekers.
  • We are all messed up victims with nothing to offer anyone else and no capacity to function without extensive support.
  • We are so weird, different, and bizarre that we are basically aliens, utterly unlike other people in any regard.
  • We are psychics, in touch with the spirit world and merely misunderstanding our gift and thinking we have DID instead.
  • We are gullible vulnerable people our shrinks have implanted with the idea that we have DID. (see Is DID iatrogenic?)
  • All people with DID are the same. (See Multiplicity and relationships)
  • DID is only ever the result of the most extreme, inhuman, unimaginable child sexual trauma you can possibly think of.
  • All people with multiplicity lose lots of time. (See What is co-consciousness?)
  • People with DID can’t work.
  • Everyone with DID has an inner self helper, an inner protector, an inner wounded child (and so on).
  • All people with DID should integrate.
  • Integration means you are now ‘well’ and all your problems go away.
  • The goal of every person with DID is to become a normal person.
  • DID is basically just a complex way to try and avoid your problems.
  • DID is just a way to avoid taking responsibility.
  • DID is just an excuse to be lazy and confusing.
  • Everyone has DID.
  • People with DID are extra special people who are nicer, more intelligent, more creative, and more wonderful in every possible way than all other people.
  • People with DID are all conscientious and loving and would never hurt anyone.
  • People with DID are crazy.
  • DID is the same thing as schizophrenia.
  • DID is the same thing as PTSD.
  • DID is the same thing as BPD.
  • People with DID have ESP and other otherworldly characteristics.
  • People with DID can never recover.
  • People with DID are impossible to work with.
  • People with DID are manipulative.
  • People with DID should pick one stable part to be out all the time. (See Parts getting stuck)
  • People with DID are merely under the delusion that they have alters.
  • People with DID always have a ‘real person’ and a bunch of alters.
  • If you hear voices inside your head you have DID, if you hear voices through your ears you have schizophrenia. (See Parts vs Voices)
  • It’s not possible to have DID and psychosis.
  • If you have lots of parts you have less chance of recovery.
  • Switching is always really obvious.
  • It’s always easy for other people to tell the difference between parts.
  • If anyone you knew had DID it would be easy for you to tell.
  • Alters always know who they are. (See Multiplicity – Mapping your system)
  • Alters always have a complex back history of their identity.
  • People with DID can never control their switching.
  • People with DID always know they have it.
  • People with DID are always in control of their switching. (See Multiplicity – switching and relationships)
  • People with DID make each other worse if they spend time together.
  • People with DID only get better in therapy.
  • People with DID never have any other challenges (disability, poverty, discrimination on the basis of sexual or gender orientation etc).
  • All people with DID are white, straight, cis women. (See Another coming out)
  • DID is always formed when an abused child imagines that the abuse is happening to a different child instead.
  • People with DID never spontaneously integrate.
  • People with DID who integrate never split into parts again.
  • People with DID always have lots of parts.
  • DID is the worst thing you could ever wish on someone.
  • DID is caused by things other people do to you. (rather than your response to those things)
  • DID is all about pain. (See I am not Sarah)
  • You either have DID or you don’t, there’s no spectrum of multiplicity.
  • If you have more than one diagnosis, you are sicker and weaker and less likely to recover.
  • All people with DID are going to recover horrific memories of traumatic events they hadn’t been aware of.
  • People with DID understand each other in far deeper way than a singleton will ever understand a person with DID.
  • DID is an adaptive gift and never really causes any problems for anyone. (See Adaptation and Control)
  • People who say they are DID are just trying to get out of a crime.
  • The United States of Tara is an accurate representation of all people with DID. (See my review here)
  • People with DID have to be careful not to encourage or allow their parts to become any more separate than they already are. (See Multiplicity – Is naming parts harmful?)
  • Parts will always hate each other. (See A poem conversation between parts)
  • Most psychiatrists, psychologists, and doctors know a lot about dissociation and DID (See DID Card)
  • There’s lots of good resources for people with DID
  • It’s easy to find quality, reliable information about DID
  • Most therapists are willing and capable of supporting someone with DID
  • Carer supports don’t need to be tailored to the experience of loving a person with parts.
  • People with DID are the most unwell, challenged, vulnerable, and needy members of any family or group. (See Caring for someone who’s suicidal)
  • Regular mental health services are appropriate and good supports for people with DID.
  • People with DID should all be locked up away from the regular community.

Yeah, I know I changed first to third person. I’m tired, and you get my point. I don’t think the list is complete, that’s just off the top of my head at the end of a long week. Have any to add?

Edit: Just to be very clear that I’m presenting all these ideas as myths. I don’t agree with any of them. The links in the text are to other posts I’ve written that explain why not in greater detail, and what I do believe instead. I think that maybe reading such a big chunk of myths, particularly very common ones, perhaps it’s more difficult to remember I’m presenting then as myths. I think I’ll put up a counter – post where I summarise what I do believe about DID…. Watch this space! 🙂

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

A year with Rose

On this day last year, my girlfriend Rose became part of my life. We first met online and started dating shortly after meeting in person. She’s a beautiful, generous, complex person I feel very privileged to know and love.

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Photo courtesy of Marja Flick-Buijs http://www.rgbstock.com/gallery/Zela

We’ve dealt with a lot over the year. We’ve both had health troubles. We’ve found ways to support and care for each other, to navigate the challenges of having two trauma histories and find joy in each other. I found myself reflecting upon a quote today:

Mama used to say, you have to know someone a thousand days before you can glimpse her soul.

Shannon Hale, Book of a Thousand Days

365 days today. I’ve glimpsed a little and what I’ve seen moves me.

Dating as a multiple is… interesting. Different parts have different relationships with Rose. Some date, some are friends, some more like colleagues, or little sisters. Each takes time and effort to cultivate, each brings something different to the relationship. Where one is tender and nurturing, another is mischievous and energetic. There’s a lot of adapting, and a lot of talking things through. It takes an extra special effort to be honest and authentic. Friendship is the foundation.

We’ve been talking about moving in together for a while now. It’s exciting but also stressful. For both of us, we risk losing our secure housing in a gamble on our relationship lasting – or at least our friendship lasting. As we’ve both been homeless, it’s a very raw area. One thing adds a sense of urgency to our plans, which is that we both want children. Considering the challenges of conception in a woman/woman relationship, health concerns, and our desire to have settled into living together long before we start trying, there’s a certain keenness.

When I met Rose, she had been trying for a baby as a single woman. She’s been pregnant and suffered losses before, a grief that is still very fresh for her. I, on the hand, as a sick single woman approaching 30, had all but given up on my own dream of children. Last year I started reading books on grieving infertility. To my surprise, I was given a clean bill of fertility earlier this year. With Rose’s deep love for children, and my sister back in the country, my own health limitations no longer seem such an impediment. I visit my delightful goddaughter Sophie almost every week and fall more deeply in love with her. We’ll keep dreaming and talking, trying to find a balance between pragmatism and optimism.

Falling in love with Rose has been amazing, maddening, glorious, exhausting, healing, and deeply satisfying. She’s the first woman I’ve fallen in love with, and she’s been a gentle and caring partner, laying to rest my anxieties that perhaps I was mistaken in thinking I was attracted to women. I’m now very settled in my identity as bisexual, or queer. I’ve ended many years of choosing to be single, which was the right choice for me at the time. Being in this relationship has given me so many opportunities to grow and learn, and unlearn, to share and celebrate life. It’s been eye opening to realise how much difference it makes to have such support, little things like watering the garden when I’m ill, big things like supporting my efforts in business. We’ve made the most beautiful memories, that I’ll always treasure. I’m grateful and I feel blessed.

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Storms at Sea

Last night was fantastic. It was rainy and stormy here, squalls of rain, then cold bursts of wind… so Rose, my sister, Zoe and I went down the beach. It was wonderful. I ran around whooping like a madman to encourage Zoe to run. The waves were high, the wind biting. We drank coco from a thermos, ate slightly sandy strawberries, and Zoe dug big holes to stuff her head into.

I felt free.

A part came out a few nights back who hasn’t been here in a long while. She bonded to Zoe, cleaned the house, and picked a fight with Rose. The fallout has been oddly settling. I feel attached to my dog for the first time in a long time. There’s affection when I look at her. Rose and I picked ourselves up and sorted things out. A cold wind blew through my heart. I love my house. There’s determination that, stay or go, I’m going to enjoy my time here, make the most of it. There’s good memories here, there’s scope for more.

Time off has been good. Less work, more rest, more chance to spend time connecting with friends – by which I mean more than just being in the room with them. Spring has walked through the windows and changed the colour of the light and the smell of the air. There’s a fierce joy in me suddenly, burning strong. The desire to devour life, drink deeply, inhale, crack the bones, run in the storms.

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Out of Despair 4 – The Railway Tracks

Let me tell you about something I call the railway tracks. It is something I have struggled with for many, many years. I get stuck. I plan my life, and those plans are like tracks laid out before me. In good times, they are a guide. I stick to them, but I can also get off them, make detours, follow impulses, go where the moon calls me. In bad times, I am trapped by them, no deviation, no way out. Rewind 5 years. I’ve driven into the city to go to a church service that evening. I’m trying to make new friends. I know I’m multiple but I’ve told almost no one. I’m exploring an idea that if we don’t switch, if we take the same part to church each time, we might have a better chance at making friends. It’s sort of working but also not. Driving home late at night, there’s a sudden yearning inside to go home via the beach instead. The night is cold and clear and the moon is bright silver and I’m terribly lonely and lost. I want to do this so badly, but I can’t. The plan was to go to church and come home. The beach isn’t in the diary, isn’t on the schedule. I fight very hard but I cannot make myself drive there. I go home instead. This is the railway tracks.

At the time I dig into it enough to realise that I suffered from it because it supported my functioning in another way. I didn’t exemplify the chaos that is common in someone who has parts, because we all stuck to an agreed schedule. The downside was this lack of freedom to be spontaneous. That was upsetting but an acceptable trade off. Over time, the schedule – and this whole approach, the group being bound to decisions made previously, a rigid adherence to agreements, inflexibility, feeling trapped and locked in, has degenerated into severe depression. Hence, the letting go of it all, the following of small voices, listening to immediate needs and wants. The tracks are suddenly gone. The sense of living my life by constantly bullying myself into doing things I desperately did not want to do, being so far outside of my comfort zone I couldn’t remember the last time I had seen it, of holding myself down, holding my hand in the fire, holding the feelings at bay, that has gone. The boulders on my heart have lifted. The despair is still there, the screaming pain, the loneliness, the scars, the terror, the years of torment and loss. But the crushing destruction of motivation, initiative, emotion, that has gone, for now at least. The tracks are gone. I can do what I wish, make impulse decisions. Turn right instead of left. Stand at the edge of the world and watch the ships.

Suddenly I’m walking Zoe because I want to, because I love her, because I love going out in the night and the cold where I have the world to myself, not because I have to, not out of guilt or obligation.

Suddenly I’m realising that this freedom is the key to attachment, to connection, to love. That this isn’t just how I want to look after my dog, it’s the kind of parent I want to be. Connected. Let off the hook for not being perfect. Working with what I have. It’s the kind of partner, friend, person, I want to be.

Stronger members of my system have allowed themselves to be bound by the needs and fears of more vulnerable members. It’s been critical for cohesion. We’ve been very good at presenting only one face to the world. We’re united by a set of values, and the primary need to survive. This leashing also strips us of much of our strength, passion, fire, and zest for life. You cannot dream when your dreamers are locked in stone. There’s a cold war between those who hope and those who despair. We are changing this. We are loosening leashes. I don’t know what will happen. That’s precisely the frightening and wonderful thing. I don’t know what my future holds.

Out of Despair Part 1 – Language is Powerful

Part 2 – Frameworks Free and Bind

Part 3 – The Tribe

Part 5 – The Cave Dwellers and the Golden Light

Is Schizophrenia having ‘Multiple Personalities’?

The short answer here is no. Multiple personalities (now called Dissociative Identity Disorder, or DID in the DSM) is classified as a type of dissociative disorder, while schizophrenia is a type of psychotic disorder. Very shorthand descriptions of these types of conditions are:

  • dissociation involves a disconnection of some kind, in this case between parts of identity
  • psychosis involves an addition of some kind – hallucinations, delusions etc.

From the perspective of the DSM they are entirely separate and distinct, with fundamentally different processes involved and treatments. There are certainly huge differences between many of the experiences.

Popular culture often mixes them up, which tends to enormously irritate people with either diagnosis. I have some degree of sympathy for the confusion however, because even the concept of what schizophrenia, or for that matter, multiple personalities, actually is changes quite regularly and I get that folks outside of psychiatry aren’t getting the memo and keeping up.

The longer answer is still no, with some qualifiers.

Schizophrenia roughly translates to split mind. This does not traditionally refer to the idea of split personalities, but instead to divided mental process or a split from reality. Schizophrenia is a fairly poorly defined cluster of symptoms that has changed significantly over the years and since the previous term ‘dementia praecox’. ‘Multiple personalities’ has also been understood in various different ways over the years – as an experience of spiritual possession, a subtype of schizophrenia where the person is in fact suffering from the delusion that they have other personalities, and so on.

Where things get really tricky, even with the current rigidly defined separation between these two conditions, is in the overlap of presentation or experience. And there are a lot of them. Firstly, Schneiderian First-Rank Symptoms, which were once thought to be extremely diagnostic of schizophrenia (and involve experiences such as thought insertion, thought withdrawal, and voices heard arguing) have been shown in some studies to be far more indicative of DID. What this means is that telling the two conditions apart on the basis of observing a person, or even learning what kinds of experiences they are having can be very difficult.

 

Secondly, psychosis and dissociation often seem to co-occur in my personal experience. Many people with a psychotic condition find that massive dissociation is part of the prodromal (or onset) phase, just prior to a major break. Some people with a dissociative condition, like myself, experience psychotic symptoms such as hallucinations. PTSD is an excellent example of this. Technically classified as an anxiety disorder, people diagnosed with it commonly experience both significant dissociative and psychotic symptoms.

Thirdly the whole area of voices, which I think is what really confuses things in popular culture. The DSM perspective is that voices are hallucinations, while alters are split off parts of personality. The fact that some people who have DID can hear their alters as voices blurs the two categories. Having some people experience their voices as stable personalities who perceive themselves as separate but alive, likewise. There is a considerable space here where people from both diagnostic categories meet. For more on this overlap, see Parts vs Voices. For a lovely description of working with voices as parts, see Creating a New Voice by Indigo Daya.

For some people, the diagnostic labels are very useful and important. It can be a great relief to have a name for distressing or confusing experiences, and I’m not in any way trying to take that away. These frameworks have their uses. But they also have limitations, and when you move beyond the boiled down Psych 101 spin, life is more complex than these discrete packages of symptoms can really capture.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.