SA Film Screening ‘Healing Voices’

If you’re a South Australian local and interested in mental health, this Friday April 29th is a free/gold coin donation film screening you’ll probably be interested in. All the details in the Hearing Voices Network of SA newsletter here.

First newsletter out in almost a year… Haven’t done one for the DI for the same amount of time. I miss my networks. I wish I could get paid for running them, and wish I had my little team of three to bounce ideas around with… as I’m getting back on my feet and having to pay for domain names being annually renewed and suchlike I’m starting to think more about what to do next and how to support these. Friends came over last night for the most wonderful campfire evening and it was so lovely… and made me miss being able to hang out with my local hearing voices group around a campfire without all the politics and crap about who is allowed to be friends with who… I deserve to be paid for my work, and I have the right to identify as I truly am and be friends with people from whichever category I wish.

I don’t know what the way forwards is yet, but I’m starting to be able to think about it again without being overwhelmed by a sense of failure, anger, pain and loss. Maybe that’s what the Waiting for You exhibition has done for me – given me a sense of having a place somewhere in the world. Maybe I was never meant to live in the world of mental health the way I was trying to build my career. Maybe there’s a home for me in art and a way to do this work that doesn’t exhaust and exploit me or force me to compromise my values. Maybe…

I don’t know. Nothing has worked so far. But I’m learning, through each loss and each dashed dream. I’m trying different approaches. I’ll unlock that door and crack it open a tiny bit, and back away quietly. Maybe some idea will come to me about how to grow these precious networks. Or maybe I’ll find some other, more sustainable way to make a difference in the world.

Psychosis & Secrets

I’m sitting on the pavement outside my car, waiting for the RAA to come and deal with the keys locked inside. I’ve just been to Sound Minds, our local South Australian Hearing Voices Group. I love getting along to this one.

We had a pretty full room. At one stage someone was chatting away and one of the members got the giggles. Everyone was trying to listen and keep a straight face. One by one more and more of us succumbed until we had to stop the conversation to laugh. A good belly laugh, about nothing at all. These beautiful people ground me.

I told them my good news, that my GP is on board with my unconventional approach to psychosis. A couple of us chatted about how destructive the idea of schizophrenia can be, life long illness, life long medications, being forced to confront your new reality in the interests of ‘having insight’, employers unwilling to take a risk on you, friends scared of you, family confused by you. I talked about how shame and secrecy can feed psychosis because people let them run unchecked, and try to maintain their usual activity level instead of resting, driving themselves deeper and deeper into it. How destructive the idea of a life long disability with no upsides is! How secrecy can often be woven into the fabric of psychosis, preventing the possibility of sharing the details and getting helpful reality checks. People are driven to this when saying ‘I think I might be hallucinating’ or ‘I’m feeling a bit paranoid’ would scare away friends or see them fired from jobs. One group member reminds me of the saying ‘You’re only as sick as your secrets’. Good point.

I’m not saying people who have to conceal mental illness, or those of us who prefer not to live our lives publicly on social media and blogs are sicker than the rest! I’m saying that cultural shame and fear trap people into keeping the kind of secrets that can make them very sick and very lonely.

I’ve always been a creative person… Lady Gaga

Irregardless of your musical tastes, I find this inspiring. She’s not the first artist of whom I’ve thought – if they had turned up in the mental health system at 16, we would have lost them. They found art instead, where it’s okay to be mad! It’s not just okay – it’s perfectly acceptable to not only suffer from madness, but also to use it to every advantage you possibly can. These are the stories I think of as a peer worker when I feel that the script I’ve been given is “Don’t be afraid, reach out for help, get a diagnosis, learn about your condition, you can recover” – and what I actually want to say is “RUN. Never walk into a room you are not sure you’ll be able to walk out of. Learn, but do it secretly, in libraries, online. Don’t let anyone tell you what’s wrong with you, and don’t let anyone save you. Find your tribe.”

recovery network: Toronto

Lady Gaga talking on The Graham Norton Show about how she harnesses her voices to inspire her creativity…

lady gaga

Short Clip [45sec]

Full episode [37min]

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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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Road Trip

Rose and I are home from Melbourne! We spent nearly 12 hours on the road today and I feel like I could sleep for a month. Sadly I have work in the Barossa tomorrow at noon, which makes me want to chew my own arm off! Still, it will help with the big dent the trip has made in my wallet.

The driving was easier than I expected, we spelled each other in roughly two hour shifts. Our rule was the driver gets to choose the music, volume, and temperature of the car. This worked really well. We also brought a bag of easy to eat snacks, wet wipes and tissues to keep fingers clean, lots of drinks, and plenty of caffeinated options.

The conference was incredible. In fact the whole week was incredible. I have never had so many profound conversations, new relationships, massive paradigm shifts, offers of support, and amazing opportunities in my life. I am so glad I did so much work before I got there to be able to take it all in. My head is still together although I am exhausted. I can recall a lot of the conference and I’ve got pretty extensive notes to help me too. (I plan to do my usual write up on all the talks I went to with links to the speakers for all of you amazing people who couldn’t attend) I feel like I have been eating entire planets and now need down time to rest and digest. The world is a very different place for me than it was a week ago, in so many ways.

How prophetic my dream was, that I still have so much to learn. I have learned so much, and yet that process continues, the more I discover the more horizon I find yet stretching out before me. The world is an amazing place. There is so much hope in my heart. I think I have found new ways forward for myself as an artist, as a peer worker and activist for social change, and as a part of a massive movement on behalf of all of us who suffer and struggle due to dissociation and all the other things so crudely termed ‘mental illness’. I’m not alone with my passion, I have people behind me who care deeply about these things too. And with them behind me, I can suddenly do so many things I could not find the strength for alone. Things are going to change around here!

But first – rest, sleep, dreams, and mulling. First the sitting around in small groups and speaking with people I love and respect, chewing things over, spinning it all into threads we can weave with. I am in love with my life.

Funding for the Hearing Voices Congress!

I’ve just had great news! I have been offered a subsidy for entrance to the World Hearing Voices Congress at the end of this month, at which I’ll be giving a talk ‘Supporting someone through a dissociative crisis’. The plan is to drive over together with Rose, and use budget accommodation, or mump off someone else with a spare room there. 🙂 I’m so excited! For all the people here in SA who can’t get there, I’m working on plans with MIFSA to offer the same talk here in the near future. 🙂 Stay tuned!

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 by Jenny

Come share with us
You’ll be safe
Pull up a chair
And claim your space

Part of a poem composed in Sound Minds yesterday, SA Hearing Voices group, by peer worker Jenny Benham.

I was very involved in supporting this group for a couple of years, but last year I found myself in a place where too many projects were taking off and needing a lot of time and attention, and I had to make hard calls about what to take a step back from. This one became one of those I stepped away from because there were other awesome facilitators involved to support it, whereas projects like the DI Inc would die if I let them drop. I’ve also had to make difficult decisions to limit the amount of volunteer work I do each week and put some deliberate thought into supporting myself and my family, and unfortunately my hearing voices work was never and is unlikely to ever become paying work. Nonetheless, I love this group and will always have a place in my heart for it. I didn’t start off being a facilitator at Sound Minds, I initially turned up as a lonely, angry person struggling with homelessness, caring, and a life in crisis. Sound Minds became the turning point for me.

Later, I spent a lot of time looking at what worked about the group, and why it worked, to use the underlying principles of respect, safety, acceptance, and recovery in building other groups like Bridges and Blue Skies.

So, it was great to go back and connect again. Jenny and I are both going to the International Hearing Voices Congress in Melbourne next month. We had a great chat about what’s going on in that world lately, and I shared my excitement about the resources Rachel Waddingham has been creating and sharing online in the Intervoice Facebook group. See some of them here. Rachel and I were talking online and I was lamenting how difficult I’d found it to create resources like that here, with no funding, lots of bureaucracy, and little support. She was suggesting brilliant ideas like utilizing our vast networks of people to share flyers instead of relying on services taking us seriously and doing it for us. It was an inspiring conversation. I regret that I’ve had to let work in this area drop, regret that I couldn’t do more. And I’m frustrated that those being paid to represent us are often far less passionate and enthused than we are. Perhaps if I can keep the DI running we can nest some resources under that organisation? I don’t know, I can only do so much. It will be so good to go to the conference and hang out with a likeminded group of passionate advocates, working without money or resources or recognition but with a painful awareness of need is a tough place to be in. It’s good to be part of a wider community.

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.

Out of Despair 3 – The Tribe

This change of approach is everywhere in my life at the moment. I have an analogy. Picture a tribe of people, living together. Now bomb the region. Nuclear! Wasteland, devastation, loss. The tribe are alive but wounded. Some are sick, some are weak, some are young. They band together to get out of the wasteland. The journey is very, very long. They don’t know how long it will take. Somewhere it must end, somewhere there must be clean water and trees. It’s an act of faith to go on, to keep believing that all the world is not like this. As they journey, some members cannot go on. They become exhausted, or too wounded, or they die. The tribe buries them, or leaves them in caves or burrows. They promise that when they find a good place, they will return. They keep on. Sometimes one member leads, sometimes another. Sometimes they fight. They learn a lot about living together and looking after each other. They leave a trail behind them, footsteps in blood, bodies under hummocks of sand and ash.

The tribe is smaller now, leaner, wiser, older. They find the edge of the wastes, there is grass again, water, food. They can make a home. They can make a life. They can sleep indoors.

The whole world of mental health now says to me – set up home. Focus on the present moment. Be happy. Be well.

My wastes are full of wailing, angry ghosts. I’m haunted by who I used to be. I owe debts. I’ve made promises.

So I look sick instead of successful, as I go back to the burrows and rouse them, the lonely, wounded, angry ones, and promise them the world now has trees in it. As I go and wake my dead, gather the bones and bring life back into them. It looks like depression. It looks like crashing, like getting sick. I don’t look like a successful, recovered patient.

But there’s life again! There’s many voices. There’s feeling in my skin. Where my routines and plans had become empty, there’s passion. Where I’ve closed my ears to the cries and done what needed to be done, now is a time to open my ears, to sit and listen, to make a fire, to share bread, to tell the stories, to bring back together what has been divided. Dark and light, old and young, bold and timid, hope and despair, conventional and misfit, to be a tribe again, to each have a voice. We all need to have a voice to dream of a new future for us all.

And here comes the next part – the dreaming. It cannot be something that suits one, or a few. Parenthood must not be something only one or two desire. A home is not a home unless we all belong there, strange as we are. If the dark wild ones need trees to climb there must be trees. We need all of us to dream, to yearn, to share in a future together.

Without all the voices we have no balance. We are divided, unstable, without constraint. The human spirit is made to be pulled in different directions, this is our pain and our beauty, we find balance between conflicting needs. I am divided, we must work together for there to be balance, wholeness, real hope. There has been rising hope and despair, in conflict, this year. To undo the conflict and find harmony, we must undo the framework.

Out of Despair Part 1 – Language is Powerful

Part 2 – Frameworks Free and Bind

Part 4 – The Railway Tracks

Hearing Voices Links and Information

If you’re looking for support around the experience of hearing voices, here are all the resources and links I’m aware of. Firstly a few from this blog:

The International Voice Hearing Community has a website at www.intervoiceonline.org and a facebook group for anyone to join to share and discuss experiences at www.facebook.com/groups/intervoice This is open to people who hear voices as well as friends and family looking for information and support.

For children and young people who hear voices, Voice Collective is UK based and found at www.voicecollective.co.uk they have a number of free resources including this online booklet: For Parents Carers and Family Members of Young People who Hear Voices or See Visions.

Here’s a list of Australian based organisations and groups:

Here in South Australia, we have currently one group meeting every week, called Sound Minds. Details on the Mental Illness Fellowship of SA website here: www.mifa.org.au/voice-hearers-group This is run by Ben and Anna, you can ask to speak with them on (08) 8378 4100. If you experience your voices as parts, there’s a group called Bridges running weekly you may wish to contact. That’s run through the Dissociative Initiative who can be found here: dissociativeinitiative.wordpress.com. There’s also a number of books on voice hearing in the DI library which you can borrow free if you live in SA.

There are many other Voice Hearing Activists who themselves hear or have heard voices and now work in Mental Health sharing their experiences and resources, a couple are listed here:

If you’re in a crisis situation, please reach out for help. In Australia you can call 000 for a life threatening situation, or ACIS on 13 14 65 for mental health crisis, or to speak with someone urgently Lifeline www.lifeline.org.au are available on 13 11 14. These are all available 24/7 and although they’re not specific for voice hearing if you or someone else is in danger they are the fastest support available. If you’re struggling to get support from ACIS, I would suggest reading

If you’re still struggling to find something local or you’d like to talk with me about your situation, you’re welcome to send me an email to sarah@di.org.au, but please be aware I’m extremely busy and may take a week or more to get back to you. Best wishes and take care x

Building social support

Some of us find ourselves in a place where we are deeply isolated in our lives. This is sadly a common problem for many people with ongoing mental health problems. Social support is one of the factors that help to build our resilience – our ability to handle difficulties. Isolation has been a major problem for me most of my life, and in my opinion certainly contributed in a big way to the mental health problems I was suffering as a young child. There are many different things that can contribute to becoming isolated, which can change the kind of approach you may find most effective in overcoming it. In my case, some of the things behind my isolation were very simple ones – such as being a creative arty person in a small school with a strong sports focus. Others were compounding issues such as developing PTSD in my teens and finding my peer group weren’t able to support me – their withdrawal distinctly increased my symptoms and distress which only made me more different and awkward and therefore more isolated. This kind of spiral – the experience of mental illness and/or trauma makes you behave differently and need different things, which can lead to your social support withdrawing, which can make the illness and distress worse – is a common one for many people. In addition, withdrawal from social contact is a pretty common symptom in many mental illnesses, so your social network can fall apart or move on while you’re hunkered down in a burrow somewhere. When you start to feel better and look around, it’s a bit like Rip Van Winkle coming home to find the whole world changed and his children grown. But too, for a lot of us isolation is part of the landscape in which vulnerability to trauma and mental illness is then grown.

I’ve rebuilt my life on more than occasion only to have it all burn again, and I’ve learned a few things from mistakes I’ve made over the years. Maybe some of these will be helpful to you.

  1. Sometimes you have to leave. I could bend myself into pretzel shapes trying to make friends at school, but really what I needed is to look elsewhere. There’s a few reasons for this – one of which is that having been targeted by bullies, even students who liked me were afraid of also being bullied if they spent time with me. But that’s another story! It would have been better for me to have been home-schooled and looked for mates in after school drama classes and activities like that.
  2. Borrowing the social network of a friend or romantic interest. It’s nice to be invited out and have people to hang around with. But if things go pear shaped you’ll be left picking yourself up on your own. Some of the energy you’ve invested into those relationships could have been spent making mates of your own.
  3. Putting up with very unequal relationships. It can get tempting to take what you can get and accept some miserable relationships when it seems that nothing else is on offer. I don’t mean never care about anyone else, or don’t be kind to your elderly stroppy neighbour. I mean taking on someone and treating them like your best friend when that’s really not what they are. Confiding personal information that is later used for gossip, nursing them through heartbreak when they never show on your bad days, always paying for the night out when they could afford to shout it now and then.
  4. Expecting more of your mates than they’ve got. When I was a teenager dealing with PTSD my mates at the time freaked out and distanced themselves. That was really painful and unhelpful, but I do get that a bunch of 15 year olds really weren’t equipped or supported to know how to relate to me. They had no idea why I was so reactive and overloaded, and frankly if I’d been given good support from other adults they might have had a model to emulate. Most of us don’t have friends who are deeply educated and experienced in mental health and trauma sensitivity. They are going to get it wrong. (frankly, even if they have loads of information and experience they will still get it wrong! That’s just the nature of being human I’m afraid) I use a lovely quote by Barbara Kingsolver as my own guide:

The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away

We all need contact with other people to maintain mental health. There may be different quantities for different people – some of us need more social contact than others. We also need a range of different kinds of relationships in our lives, from the barest acquaintances to the closest of kindred spirits. Sometimes we may be better at maintaining one kind of relationship than others. Some of us have a couple of really close mates but almost no one else in our lives. It doesn’t matter how awesome the friend is, you still need other layers in your life. Others of us maintain a healthy bunch of friends we see now and then, but never seem to find anyone really close. Some of us find ourselves in a pretty bleak space where we don’t really have anyone.

I started rebuilding my own networks from the outside in. That is, I started looking for acquaintances and people I might hang out with occasionally before I went looking for closer friends. There’s less being asked of someone at this level, so a lot more people will make great acquaintances. A few years back I started going to Mifsa (Mental Illness Fellowship of SA) looking for company. When I first walked in to the activity centre and looked around, I was really disappointed. No one else there seemed to be like me at all. Many of the other people openly asked what I was diagnosed with when they first met me, which I found really confronting. I was at the time very closeted about my mental illnesses and I refused to disclose. On one occasion another participant took this as a challenge and told me they’d be watching me to work out what I had! This wasn’t a great start and I stopped going.

Then it occurred to me that there could have been a whole stream of people like me, with my interests or similar experiences coming through the activity centre over the years – but until one of us stayed put we were never going to meet each other. So I decided to keep going anyway. It helped to have somewhere, however imperfect. Access to resources such as the internet, landline phone, cheap meals and food bank helped get me through some really tough times. And although I wasn’t close to most of the other people there, they were company, someone to play pool with or watch a movie with. Just that basic friendliness meet a need for me.

Sound Minds (Voice Hearers Group) was  a real turning point for me. Again, initially it was less than ideal. I was the only person there with a dissociative diagnosis, and at that time Mifsa had no books, fact sheets, experience or resources of any kind geared to dissociation. I had to explain myself a lot and I was very stressed and sensitive about my diagnosis. But I was accepted, and they let me come and be upset about my life without telling me I should look on the bright side. Out of this the Dissociative Initiative was born and now things are changing. Sound Minds was also originally geared towards education. The first time I went along and shared that I was lonely, the room went quiet. Several other people then shared that they were lonely too, and it was just something to get used to. I went home and decided that a room full of lonely people was daft. Gradually the group became more social, and now I have the whole bunch round to my place for a camp fire catch up regularly.

I’ve started to build networks through the mental health community by turning up to lots of events and being friendly and talking with other people. I’m starting to get to know people. I also want to make connections through different networks – which is part of the motivation for the mad amount of study I do in different areas. But I started much smaller – by looking in places where I had interests (such as art) or felt accepted despite challenges (walking into a building marked “Mental Illness Fellowship”).

I have also found online communities at times to be very supportive. Facebook helps keep me in touch with people I don’t get to see often or those I don’t know well enough to give my details to. Skype keeps me linked in to people a long way away. Some nights just being able to find someone else awake and have a quick chat even if about nothing personal has helped take the edge off. I’ve been part of online groups through Yahoo which helped me to understand a lot more about my mental health and have other people to talk to.

For relationships that have been intense and distant, as in the instance of some family members, I’ve read about relationships under stress and learned about boundaries, polarising, and other common issues. I’ve worked on lowering the intensity and reactivity in these relationships, resetting back to friendly acquaintance if I can and re-growing things gently. I’ve also done a lot of work on myself, accepting myself, learning assertiveness, better communication, and how to better contain the kinds of symptoms that cause me problems in my relationships – such as raw emotional intensity, impatience, ambivalence, emotional disconnection and preoccupation, irritability, and… you get the picture. I’ve had to do a lot of building a better relationship with myself instead of trying to resolve emotional pain through company. Having said that, I’ve been quite stunned at the incredible difference having some emotional and social support has made for me. A lot of that emotional reactivity and instability have settled by themselves. It is too damn hard to do this all by yourself.

I’ve had to let go of some relationships that were really important to me because they weren’t working and sometimes I am just too fragile to handle it. I’ve also had to learn how to accept a relationship that isn’t quite what I wanted or that changes over time. Sometimes you end up in a relationship where you are treating the other person as a best friend and they are treating you as an acquaintance – so you do a lot more nurturing and being involved then they do. It’s been a hard lesson to learn that sometimes if that’s the level of relationship they want or are comfortable with, that’s what it needs to be. Very close friends take time and energy to maintain, and there’s only room for so many in our lives sadly. Sometimes you think someone is awesome but so do a few other folks and they’ve already got their complement of close mates. It’s okay, keep looking, if you’re a good friend and you let things develop at a good gentle pace, you’ll make them.

Hearing Voices

I’ve been attending, and lately, co-facilitating, a group called Sound Minds for over a year now. This group was started by MIFSA, based on the principles of the Hearing Voices network. I initially went along to support a friend, but found it so helpful for myself I stayed on. I feel very fortunate to have a group like this in my life, it has made a huge difference for me.

Hearing voices is actually a fairly common human experience, but one that has become linked to serious mental illness and major stigma. A lot of people who do hear voices keep this a secret and fear being found out and thought of as mad. Technically, a diagnosis such as schizophrenia require a number of criteria to be met, not just an experience such as hearing voices. But in my experience, if you tell a doctor you hear voices you will likely receive a diagnosis like this whether you have any other symptoms or not.

The standard medical approach to voice hearing goes something like this:

  1. You hear voices because your brain isn’t working properly. You have a mental illness. Your voices are auditory hallucinations.
  2. The cure for this is medication, which addresses the chemical imbalance presumed to be the basis of this illness.
  3. If medication isn’t working, increase the dosage, add more meds, and possibly ECT.
  4. If this still doesn’t work, you are a chronic case, likely to experience lifelong disability.
  5. Talk therapies don’t help, and you should never talk to or about your voices as this will only make them worse. There is no context or meaning to your voices, and hearing voices can never be a neutral or positive experience.

The problem is that for many people, this approach isn’t particularly effective. The Hearing Voices network is a grass roots movement that started in the Netherlands in the 80’s. There’s an interesting article in The Times about how Hearing Voices groups work for people. Some very interesting findings have come out of research into voice hearing, such as-

  • Many people who hear voices do not meet any of the other criteria for a mental illness
  • Many people hear positive or encouraging voices and are not distressed by their experiences
  • Most people who hear voices do so after a particularly emotional or traumatic event
  • Some people only hear voices for a short period of time, then they go away.
  • Some people find that ignoring their voices and constantly trying to distract themselves actually makes their voices worse.

So, the idea behind Sound Minds is having a group that doesn’t use the medical approach to hearing voices. We don’t presume to tell each other what their voices mean or how to manage them best. We each share our journey, our understanding of our own voices, what helps us and listen to each other and borrow strategies to help us manage our experiences. All newcomers to the group are given this printout, and told that it’s been written by other voice hearers, not by ‘experts’. We encourage them to notice if there’s anything listed they’ve already tried, and if it was a helpful approach or not.

The emphasis is upon individuality – how each person understands their voices is legitimate, and what works for each person is often different. Group members are encouraged to be accepting of a diversity of experiences and approaches to voices, and to share ideas without pressuring each other to see things their way. Some people find the biochemical model most helpful and have found medication and/or ECT to be lifesaving, but wish also to be able to talk about their experiences with people who understand. Others have a spiritual framework for their experiences, or link hearing voices to trauma. Some people find telling the voices to be quiet can restore a sense of control, while others find it escalates them. Some people find that the right approach leads to their voices going away, others find it helps them learn to live with them.

I’ve just been listening to a presentation from an International Conference about Recovery from Psychosis. The talk was called “The Personal is Political” by Jacqui Dillon. This would have been an incredible conference, the talks are available quite cheaply (compared to the cost of attending the conference!) on DVD here. Jacqui’s understanding of her own voice hearing experience is closer to DID than schizophrenia, she considers her voices to be parts of herself. This approach has clearly worked well for her and she presents about her experiences in an articulate and deeply moving way. You can hear a different interview with her here.

So, if you hear voices, or know someone who does, take heart. It is still possible to lead a wonderful meaningful life, even if your experience is one of those around learning to live with, rather than being cured of. If what you’ve tried or been told to try so far hasn’t worked, perhaps there’s some suggestions in these links that may help you to look at your situation from another perspective, and find a new approach. It’s important to keep in mind that even your best strategies may not work all the time in all situations, so don’t give up, keep looking, learning, and discovering those keys that help to give you back a sense of hope.

The Australian Hearing Voices network have a website here, with some of the groups listed. They don’t update it very regularly and so far we haven’t been able to coax them into including Sound Minds in their listings, but we’re working on it! If you’re in SA and you’d like to come to Sound Minds, the details are all here. The group runs every week but there’s no pressure to attend, people come as often or as little as they wish. You are also welcome to bring along a friend for support if you wish. If you’d like to print a flyer to keep or share, there’s a pdf here – and that’s my artwork designed in consultation with the group and donated for the flyers. 🙂

For more support, see the community I founded: The Hearing Voices Network of South Australia: www.hvnsa.org.au