Dissociation and food

I’ve not come across a great deal of information about the relationship between food issues and dissociation. My colleague Cary is working on a thesis on the topic, and it came up the other day in our group Bridges. Many of us who struggle with chronic dissociation also have some difficulties with food. This is by no means all people, dissociative experiences can vary significantly from person to person. What do I mean by food issues? I’m talking about struggles that range from entrenched eating disorders to milder difficulties. Some people have a tendency to starve themselves, others find themselves overeating. Personally I struggle with a binge-starve cycle that slows my metabolism, wrecks my energy levels, and causes my weight to fluctuate. Dissociation and food issues can go hand in hand. People who struggle with over eating sometimes describe ‘unconscious eating’ where they consume food without being aware of it. Most of us know the annoying experience of reaching for a cup of tea and discovering we’ve already drunk it without registering. For some people this goes a step further and they find themselves looking at a clean plate and wondering what they had for dinner, suddenly realising the biscuit packet is empty, or finding themselves roaming through the cupboards looking for snacks whenever their concentration wanders.

Not eating due to dissociation can also be a difficulty. Personally this is something I’ve realised I have quite a problem with. When I’m very dissociative, I tend to lose my sensations, so I can’t feel things very well. That includes the sensation of hunger. Without that cue, I would at times go for several days without realising I hadn’t eaten. This starvation would do nasty things to my blood sugar levels and usually increase my dissociation. It wasn’t until I started fainting that I realised this was quite serious. A combination of sleep deprivation, starvation, and extreme stress has produced the most severe and terrifying dissociative experiences I’ve ever had, something like a drug overdose high. I now have to use the time of day as my cue to eat, and as I do eat more regularly it’s been exciting (but also freaky) that my sense of hunger has been returning.

The binge part of this cycle for me is that erratically I would eat large meals of high sugar foods. With my metabolism slowed down, I don’t tend to feel hungry and I’ve lived for many years on one meal a day. The binging has been a problem since childhood, when I would hoard, an on occasion even steal, sweets. At the time I was confused and deeply ashamed of this compulsion. At times my behaviour seemed to resemble an alcoholic, with sugary foods hidden in stashes that I consumed secretly, at high speed, at times of stress, and felt deep guilt and shame about. I teetered for many years on the edge of adding a purge component to this cycle, and deliberately cultivated a phobia of vomiting to help keep me away from this.

I’ve come to understand my food struggles as being created by a number of different issues. One of them is attachment problems. This is about our experiences as children, and how we now tend to view and react in relationships. For some people with attachment problems, ‘comfort food’ goes a step further and children may hoard food in fear that their needs will not be met and as an attempt to be self reliant. Another component is self image and self loathing issues, born out bullying and humiliation during childhood and teenage years. A deep ambivalence about food and myself makes it difficult to have a healthy relationship with food. Another component for me is intense stress. Sugar cravings are common for people who experience intense stress, because adrenaline and sugar have a relationship in the body. I’ve found I tend to crave sugar when I’m stressed. Another factor for me has been that at times I’ve been threatened or physically assaulted, which is just the kind of situation that makes you wish you were bigger and more imposing. This can lead to weight gain.

Food issues can also be a kind of self harm. There are many ways to play out self loathing, to try to override emotions or memories, and to express pain, and needs around control. People used to living in a disconnected dissociative state may use over eating or starvation to trigger dissociation when they feel overwhelmed. Others may use the discomfort of overeating or the pain of hunger pangs to reconnect them to their body and help to manage dissociation.

So, what can be done about this? Firstly it helps to know that food issues and dissociation often re-enforce each other. They easily form cycles where the dissociation aids the food problems and having problems with food makes you more vulnerable to dissociation. This cycle will need to be broken. For me, I’ve had to move quite slowly on reducing my issues. Several years ago after my most severe dissociative episodes involving low blood sugar and sleep deprivation, I made a rule that I had to eat one meal a day. At the time that was quite a challenge. I also started to examine what was behind my difficult relationship with food, and started to tease out the emotional components and work on them. One of the biggest I started with was the issue of self loathing. Initially I couldn’t imagine a life without it, but I could see how badly it was crippling me and kept working away at it. On bad days I can’t eat, and if I force myself to I will only be terribly ill and likely vomit. I don’t force myself. When stress levels are high, energy is diverted away from the digestive system. There’s only so much I can do and I let myself off the hook on the bad days. The goal is sustainable change, not re-enacting abusive scenarios where I feel terrible and out of control.

A couple of years ago I moved up to two meals a day. I was able to sustain that except for periods of homelessness when I tended to drop back to one or less. Now, on good days I have three meals. Possibly half my week is like this at the moment. I also tried to link food to good experiences – so I often eat a snack or even lunch in my groups because they are such a safe and positive environment for me. And I wanted to remove shame and humiliation from eating. I dismantled my stashes and decided that if I was going to eat something like chocolate, I would do it openly, I would enjoy it, and I would feel no shame, even if I gained weight or people made rude comments. These movements, little by little, have moved me towards a better diet, better energy, and better health. My cholesterol level which had been rising is now low and stable. My weight has stabilised, and my health is better than it has been in many years. I no longer diet, I refuse to engage in fads or restrictions, ‘bad foods’, or an obsession with ‘healthy’ food. My goal has been to tune back in to my body, to eat and enjoy eating, to have fuel, and to get back to the good side of being fussy about food – the pleasure of good food and my love of cooking, the kindness and care of preparing good tasty food for people you care about, and to resolve issues of shame, control, stress, and comfort in my journal rather than my diet.

If you’re struggling with dissociation and food, take heart, you’re not alone! It may be that a two pronged approach – working on reducing the dissociation, and working on understanding and resolving the drive behind the food issues will give you the best chance of making good changes. Food issues can be tenacious, deeply rooted, and re-enforced by the unkindness of our culture. You’re not going to make progress every day, and you may find that things change slowly with back steps and challenges along the way. I’d suggest watching those who have a good relationship with food and their bodies and modelling whatever you can.

If you’re a multiple, you may have food issues broken up among different parts. Sometimes everyone in the system is fine but one part has a major eating disorder. Sometimes the roles around food are broken up, perhaps one part cooks, another eats, and another cleans up the kitchen. Maybe you function just fine around food until the one who eats goes away for a while, or until someone who doesn’t eat ends up being out for a long time. I know that this kind of dissociation can add a whole extra layer of complexity to the situation, it may take a while to even work out what is going on and who is doing what. Be patient and gentle, you will make sense of it at some point and work out what you all need to do to make sure your body stays nourished and taken care of. Getting a hold on food issues may help you drastically reduce your dissociation and be an important part of your recovery. Best of luck to you!


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Feeling chronically suicidal

Wow, another big topic! I simply cannot do justice to these in a blog post, so please don’t be under the impression that my notes are in any way definitive. I just hope to share a few thoughts and ideas and maybe they’ll be useful to someone else. If not, there are a lot of books out there, and good support too (although you may have to look hard for it) so please don’t be discouraged, keep hunting for what you need.

Feeling suicidal has been something I’ve lived with for most of my life. I was first seriously making attempts on my life when I was 10 years old, feeling totally alone and overwhelmed and desperate not to suffer anymore. Since then it’s been a companion I’ve had to learn to live with, a shadow I can’t shake. It sits on my shoulder and whispers into my ear, weakens my courage and resolve, tells me that things will not get better. So how am I still here?

There’s a few nasty traps with feeling suicidal that I’ve been able to see and to some extent avoid. The first one is the idea that if you are sick enough, or in enough pain, that someone else will come and help you. This is a powerful rescue fantasy that the mental health system often inadvertently plays into, which is heartbreaking because no one can sweep in on a white horse and take your pain away. I once spoke with a young woman who tried to admit herself to hospital as she was feeling suicidal. They told her unless she hurt herself they couldn’t help her. So she did. Mental health staff will often draw distinctions between degrees of suicidiality – the occasional thought, feeling it strongly, making plans. Between so called ‘passive’ and ‘active’ attempts (those you have a good chance of recovering from and those you don’t). In my experience this is often done quite without any awareness that in an attempt to be taken seriously and gain the help they think is on offer, people often steadily graduate up the ranks to higher and higher degrees of suicidiality. What agitates me so much about this, is that a cross-wiring of kinds is happening here – good healthy impulses to get help and get better are being cross-wired into self-destructive acts. Now both the healthy and the unhealthy impulses are driving the person down into suicide – what hope do they have then?

Sadly, the line between the people not sick enough to need help, and those so sick they are considered beyond help is very fine in some circumstances. People find themselves unable to access services as their situation is not serious enough, and then unable to access them as they are too high a risk. A long time ago I discovered that my learned pessimism about other people’s power or willingness to help me actually stopped me getting worse in a misguided attempt to get support. It’s not an easy one to stay out of for me, a bit like a whirlpool that pulls at me. I have to mentally remind myself a lot that my energy must go into getting better and taking care of myself, that getting sicker to get help is like going deeper into the desert following a mirage of water. No hope lies that way.

Another trap I’ve noticed is using symptoms to express pain. The mental health system is at times very poorly set up to support people who’ve experienced trauma. Sometimes the number and severity of your symptoms are used to ‘grade’ how severe the experience you’ve come through is. This penalises you for being resilient, and leaves you caught between getting validation and acknowledgement for your trauma, or functioning to the best of your capacity. People with trauma can start to speak ‘the language of symptoms’, in inpatient settings they may compare severity of illness to rank their trauma along side each other and compete for the highest severity, comparing scars, numbers of diagnoses, amount of time in hospital, number of suicide attempts. Especially when your trauma is being denied or downplayed by those closest to you, the need to have it acknowledged can be so profound that people self destruct seeking that validation. This can be hard to understand if you’ve not experienced it. The language of symptoms is subtle and insidious and once you start speaking it it’s very hard to break. In this language suicide is seen as the ultimate way to express pain, to reject terrible circumstances, to show that you were a victim, and that your situation was so severe it was not possible to survive it. The way out of this is to refuse to rank trauma, to validate all harm and all pain, to take away the burden of ‘proving pain’ from people who are hurting.

The lure of safety is a trap that can make death seem enticing. People who’ve been badly wounded and broken can be willing to hide out in any port to escape the storm. It’s hard to keep hoping that tomorrow will be better when all your hopes are dashed. It’s hard to find strength when the bad days are horrific and completely outnumber the good. We can get to a point where we just want it to stop and will do anything to make it go away.

I turn these thoughts on their head whenever I can. Instead of seeing death as a peace that I am denied, I find anger in my heart at the thought that my story would end in such a miserable place. I use everything I have already survived as impetus to keep me going on – if I was going to give up, I should have done it 10 crises ago. I’ve already come this far now, nothing will take me down now. I find that it is crucial to reframe the seductive nature of the traps and find a way to think of things where continuing to live is being brave, is bearing witness, is triumphing over abusers, is having a voice, is all the things I long for. If you allow suicide to be framed in a way that it seems to contain the things your heart deeply longs for, then you are incredibly vulnerable to it because it will take all your strength to deny yourself what you so deeply desire and have within your power, and none of us can be strong all the time. For me it’s key to see these things as tricks and deceits, like sweet voiced sirens that will sing me onto the rocks if I listen to them.

I also hold onto many things that help to keep me in life and wanting to live. I do not have one precious thing, for that would make me terribly vulnerable to losing it. I have lost so many things dear to me in my life. I have many things, big reasons and little reasons that hold me here and keep me fighting for life. Some are huge ones – I want to write books, who would care for my pets, my family needs and loves me. Some are little ones – I’d planned to feed the ducks this evening, I haven’t finished making that birthday gift, the moon is so beautiful tonight, perhaps I’ll watch it set. They are my talismans against the dark, and they fail when the darkness is great. I hold one until its light goes out, then I put it back and take out another. The power of feeling suicidal is that it strips meaning from that which means most to us. In a black, fey mood, the thought that our children would miss us is suddenly hollow and devoid of power. I have learned to expect this and not be dismayed by it or blame myself for it. I rotate my reasons to keep going, and never hold onto one past its usefulness. In time it will regenerate and I’ll be able to use it again.

I also now know that there are times when all my reasons fail. When I am joyless and without love of life, when I have no hope for a future and can find no meaning in my pain. When to ask me to live is to ask to me to submit to torture and anguish. In these times I pour the pain out of me, into journals, I weep for hours, days, months, I scream myself to sleep. I accept that I am without hope, without reasons, and I put myself at the mercy of the world. If I am to die, then kill me, but it will not be by my hand. And if there will one day be a reason for me to have endured this, then spare me. I will wait for it. One day there will be reasons and meaning and hope and I will be glad to have endured.

I have also learned that not all change and help comes from within me. When I am deeply broken, I bind myself to stillness to keep me safe from my reckless longings, and I wait. I have learned that if I wait patiently, with my eyes open and my ears pricked and my heart ready, then something will change around me. I will read a book that speaks to me, or someone will say something that unlocks a peace in me, or some circumstance will change and give me hope. Sometimes my desire to be the agent of change, to fix the pain and put the world to rights is the very part of me that is most dangerous in despair. I hold myself still and wait for hope.

I also find hope in my ignorance. I remind myself how many books I have not read, the degrees I do not have, all the millions of people in the world with thoughts and ideas and theories and experiences I’ve never heard of. When I can find no way to patch together any hope with what I know, I go hunting for information and I tell myself that I will find it again. My knowledge is such a speck in the universe, and how much my world has changed with powerful books, good friends, sound advice, how much my inner life has grown and my strength increased as I’ve learned and understood more. And yet still I know so little. I cannot pronounce the certainty of despair when I have only the tiniest fraction of all the knowledge in the world. Other people have found hope, I will sit at their feet, I will watch their lives, I will find foundations for my own.

I abandon reason when reason drives me to despair. There have been times in my life when the anguish was so unbearable that I have broken inside and decided that it was no longer fair to ask me to endure it. That if love of my family kept me here, than that love was cruel. I have taken my hits and bled my last drop and no more can asked of me. I had no reason to expect that my life would become any different to how it has always been. In this place I cast about desperately for a reasonable response and could not find one. In the end I sidestepped the question entirely and concluded that if hope was foolishness and staying alive was madness than I would be a fool. A little madness can be a refuge from the relentless logic of such thoughts.

At times it is helpful to remind myself that there are those, only a very very few, who have hurt me for the sake of the pleasure of hurting me. That they would gain delight in knowing that I continued to inflict pain on myself long after they had gone. That dying by my own hand would be murder from an untraceable distance. I am a profoundly stubborn person. I decided if they wanted me dead, they were going to have to do it themselves. If there are black days where I live only to spite those who’ve hurt me, then so be it.

Feeling chronically suicidal can become a mental habit whenever things go wrong. Your brain tosses it up as an option like a big dumb dog dragging something horrible on to your bed. If you’re used of thinking of suicide when you’re stuck, it may help to talk back to your brain (politely) and tell it you don’t want this option at the moment. You want other suggestions and ideas about how to improve things. You may even write a list of all the various options open to you, and number them ahead of suicide in your list of ways to respond to your life. So perhaps suicide ends up being at option number 467, after

  • 452. Move to Japan and take up kite making
  • 231. Eat everything you can find in the fridge
  • 93. Call a helpline

I run my proverbial list in order from most to least likely to help, easiest to most drastic, and least to most harmful. Even self harm, total isolation, or an eating disorder are before suicide on my list. They I can heal from later, suicide I can’t. Some things – like harming someone else – are after it. It doesn’t have to be a good reason (although a good reason is better) it just has to be enough to get you through. Almost anything you do with your life should be above suicide on your list of options.

So the rope I have cast over this pit is woven from many different things, stubbornness, folly, faith, patience, experience and a deep love for life. No one thing alone could keep me safe, but between all of these things a kind of armour is made that helps to protect me from despair, a kind of path that walks me through the darkness.

I imagine that the things we each make this path from may be different for us all. It doesn’t matter if it makes sense to no one else, if it’s patchworked together, a jumble of contradictions, badly worn thin and with holes you have to leap over. It doesn’t have to be perfect, it only has to be enough to get you through this night. Tomorrow can take care of itself.

I hope you may find something here useful or thought-provoking. If you are feeling suicidal yourself, please take good care of yourself. Call someone if that may be helpful, do those things that keep you safe and give you hope, reframe it, wait it out, find someone to hold you, find reasons to endure, and walk gently. There is hope for us.

Australian 24 hr phone services:
Lifeline: 13 11 14
ACIS: 13 14 65
Suicide call back service: 1300 659 467

Big news!

Well, just when I was getting back into the swing of things, I’ve had some great news that has bowled me over and thrown all my new plans and routines out the window – I’ve been offered a unit through Housing SA!

It’s absolutely gorgeous, close to the city, ground floor (no steps or stairs – important when you have a fluctuating joint pain issue) with a little backyard that’s fully fenced, so my dog can come. There’s a small garden patch out the front that I’m thinking may become a veggie patch. It has two bedrooms, a master that will make a great art studio, and a small secondary that will be used as a bedroom. There is a bath, which makes me very happy, a large loungeroom, a dining area and a kitchen, a small laundry, and a garden shed out the back. The stove and water system are on gas, and it has a double sink in the kitchen. There’s a huge peppercorn tree in the backyard for shade. The area is very mixed with some new homes, some very old ones, and a bit of industrial as well, but it has a great arty feel to it. My moving date is next friday – the 13th – most auspicious 🙂

I am so very excited and fortunate. This has been a very long road. I left home at 18 to live independently, but had to return at 19 when I became very ill and unable to care for myself. A few years later I had to run from an abusive relationship and found myself homeless. Unfortunately, at that time I was advised not to bother getting my name on the Housing SA list as the waiting times were so long it was pointless. How I regretted that! I didn’t realise that once you’ve become homeless once, you are very vulnerable. A lot has to go wrong in your life for you to be homeless, a lot of security, stability, finances and social connections fall apart. Places that help homeless people often make a distinction between those who are homeless, and those who are roofless. The roofless are those we tend to think of, they are sleeping rough on the streets, in squats, abandoned buildings, skips, anywhere they can find. The homeless on the other hand usually have a roof over their head of some kind – in a shelter, a vehicle, a caravan, couch surfing and taking up with anyone available. This is an important distinction to make, as those who are homeless but not sleeping on the streets are essentially an invisible population. There are few supports and resources as few people realise the extent of this problem. People with disabilities and mental illnesses and young people particularly struggle with this kind of homelessness. There is no security, you move often. You often lose most or all of your possessions. You live in unsuitable conditions because you have no choices. There are many predators out there who take advantage of the homeless. You can’t keep up with your mail, with Centrelink, with work or study. You have no privacy, you have no idea where you will be from week to week, if there is an abusive ex stalking you the fear and stress are even higher. You are a very vulnerable person in this situation, easy to exploit.

I have found myself repeatedly homeless since that first flight out of danger. It cost me far more than I thought it would to escape. I became suicidal and struggled with self harm. I was exhausted moving my gear from place to place and seriously tempted to destroy it all instead. I used up all my savings, had to give up my pets, my diet become unhealthy and erratic and my health struggled. Shelters are not the panacea they are widely held to be, and I didn’t qualify for any of the support out there for homeless people, due to age and disability. I was told by one youth service that “no one cares if 26 year olds are homeless” when I begged them for help. Not only was it my fault I was homeless, it was my fault I didn’t have the social support to ease it. I’ve bounced all over the place and tried many things to create more stability in my life. I’ve lived in a caravan park which was awesome in some respects and scary in others. I’ve slept in my vehicle, in backpackers, at other people’s places, in a shelter, in group housing, in a lovely unit with a mate helping me with the rent, with family, on couches.

I found there was a tremendous tension in being homeless between trying to adapt to my new circumstances, the world I had found myself in, and trying to maintain a toehold in the world I wanted to get back to. They were very incompatible goals. Trying to do both was extremely difficult. For example, one way of adapting to chronic homelessness is to drastically reduce your belongings down to something you can carry. This makes all the moving much less exhausting. It is emotionally painful, especially when you don’t have family backup. Most young adults don’t carry around all their precious memorabilia, the vase they inherited from their Great Grandma, the scarf their Nan knitted, it’s stashed with their parents for a later date. Anything I had a connection to, dreamed of one day putting on display or showing my kids had to come with me or be stashed with a friend for a little while. If you do carve back your belongings to a bag, and then rent a place, you have nothing to put in it. Even with what I did bring, on the occasion I was able to rent a unit for a while, I struggled to afford furniture. I ended up borrowing a van and collecting most of what I needed out of the hard waste collections around the city. To be broke, short of friends, and short of resources is to be in a really difficult place. Without having someone to borrow the van from, I simply wouldn’t have had a bed or a table or a couch. And for someone who’s been roofless – who cares! You’re safe and dry. But if you’re trying to climb out of that underworld, you need to look like the people with homes. You need to be clean, to smell nice and have cut hair and wear clothes that are fresh and unrumpled. You can’t get jobs without these things. To be a student you need a basic level of mental health and emotional stability, you need space, time and quiet to study, you need sleep and food regularly and to be able to get to and from the uni without being totally exhausted or financially crippled. To maintain your own mental health you need to hang on to your poetry and your artwork. The more you adapt to homelessness, the more it becomes normal to skip meals, baths, sleep, to eat anything you find, to be grateful for blankets, to not care about how you look, to be used to being completely uncontactable, no phone, email, or address, the harder it becomes to pass yourself off as part of the rest of society. You become feral as far as they are concerned, and rather than admiring your will to survive, they are generally repulsed. There is no adapting to you. If you can’t attend that Centrelink appointment you will have no money.

So I’ve tightrope walked between the two worlds, I’ve discovered that people think that folks with disabilities never become homeless and never need to leave abusive relationships. I’ve found that shelters seem to think that being homeless is a weakness of character, proof of your failure to manage your own life properly. I’ve learned that people think the homeless are lazy and disorganised, and that it isn’t a big deal. I’ve found that people who choose to explore an alternative lifestyle can be the harshest to those who live in similar circumstances, but do not have the networks or support to choose any other way when they wish to. I’m furious that we think of homelessness only as being roofless, and that being roofless is effectively illegal. That we cannot pitch tents on parks or beaches, cannot squat in buildings, cannot build our own homes as our ancestors did. That we can be moved on from any place, kept out of sight, in the cold places and in the shadows where no one has to see us or know about us or feel guilty about us. I’m furious at ads offering rooms for sex, at turning up to my 100th open inspection on a flat to find there are 50 people applying, at applying to rent an old office and corridor with electric fry pan (the ‘kitchen’) for more than I can afford to pay. It’s been a long road.

So here I am, about to move into my own place, probably on a 1 year lease, which I hope will be renewed for something a bit longer next year. (they no longer offer lifetime leases) I’ll be taking my little blind dog and two cats with me so we’ll be quite the little family together. I’m sad that the next month looks like a lot of packing and unpacking boxes and not much art, but the timing is perfect as I’m not yet embroiled in training and work. I’ll have to take extra care of myself as I find moving difficult with the dissociation and the effort of moving myself and exhaustion will probably take a toll on my physical health too. But it is such a wonderful thing to be in my own home and I cannot wait to have it all set up.

Intimacy after abuse

There is mature but not graphic content to this post, please be aware!

Sadly, being abused by someone often leaves us with difficulties around areas like touch, proximity, and trust. Trying to separate terrible feelings linked to abuse from our desire to be physically intimate with another person can be a challenge. Many of us feel damaged, painfully aware of our difference and try to somehow make up for it. We can get ourselves into some really miserable situations if we don’t decide that we have the right to heal from the trauma in whatever way is best for us, and in our own time frame. Feeling guilty and under pressure with a partner is a quick way to end up accidentally replaying the abuse and re-enforcing to yourself all those terrible underlying messages such as ‘women can’t be trusted’ or ‘men are brutes’, ‘my needs don’t count’, ‘I’m horrible and no one would ever want me’, and so on.

The first aim from my perspective is rather like the Hippocratic oath. First, do no further harm. That means trying to stay well away from anything that replicates the initial trauma in that you feel like you are powerless, beholden, or trapped. Without being allowed to say ‘no’ -to anything, at any point, and to change your mind (more than once!) it is very difficult to find your own powerful ‘yes’. Many of us get tripped up and feel that we owe a partner, feel sorry for them being stuck with us and all our issues, or fear that it’s not fair to change our minds at any point. My feeling is that we always have the right to say no, that this is the most critical personal power we need to make touch now different from abuse. The right to change your mind is also important, sometimes having a ‘no’ respected is the very catalyst you need to feel safe and sexy and suddenly ‘yes’ is on the cards! One day you may declare that you don’t want to have sex again for another 2 years to give yourself time to heal. The next you may be feeling free and fun again. Intimacy should not be built on obligation, anxiety, compulsion, or anything but that strong internal ‘yes’. It is not for anyone else, to repay favours, to try to stop someone from leaving, it is not something you can owe to anyone, or something that should ever be demanded of you. The first and most important foundation is that you get to opt out.

Does that mean introducing manipulative games and with-holding into your relationship? If those dynamics are present, I’m sure that an idea like this will be used in ways designed to be hurtful. If a casual partner refuses to agree, I would walk away. If a long term partner turns the idea of having rights over your body into a massive power struggle I’d be very concerned. Does this mean that you have all the rights and your partner none? Not at all – they have exactly the same rights as you do. Getting involved on this level, particularly if you are struggling with an abuse background, requires a level of maturity and sensitivity. If they also have an abuse background, and people with similar experiences often do attract each other, then yes, it’s going to be a bit of a dance to work around all the different triggers and I would expect quite a few days with cold showers in them. Within a good framework where there is trust and respect, a lot of love, care, tenderness, fun, and healing is possible.

You may wish to discuss your history and concerns with your partner/s. They may find this hard to hear about, I’d recommend keeping these conversations out of bed, and they may need support themselves to learn about and cope with the abuse. A tiny word of caution too, you don’t want to find yourself with someone who copes with your history very well because they care very little for you or have a sadistic streak. It might be rocky to be with someone who finds it hard to hear that you’ve been hurt, but it could be a better road in the long run. Try to be understanding that it’s a painful topic for anyone to hear about.

So, with that foundation, what next? How do you stay grounded? How do you stop bad memories intruding? What if you have a panic attack? How do you manage ambivalence? I’m not an expert in this field! Here’s some suggestions from my experience, reading, or things I’ve learned from other people.

It’s okay to be ambivalent. This is the pretty normal reaction to trauma and abuse. You may be excited by and appalled by sex, touch, and intimacy. Both feelings and reactions are real and legitimate. Over time and with appropriate expression, I hope you will be able to separate them and help them to become more distinct. What do I mean by that? When we feel something strongly, it often becomes diffuse, undifferentiated, spreading outwards in a cloud and attaching to many unrelated things. A woman abused by a man may hate and fear all men for a while. A man betrayed by a friend may distance himself from all friends. A child frightened by a person of another race may fear all people of that race. Sex and abuse often feel profoundly tangled in together, over time and with processing they become more separate so that you are able to feel interest in the one and loathing for the other as distinct, separate feelings for different experiences. Give yourself the right to feel all the feelings that you do, and to give them safe expression, and help yourself to untangle the experiences and treat them as separate.

That distinctness between the experiences can be the key to staying grounded and preventing the intrusion of bad memories. If you have clear memories of your abuse, you may be able to quite easily find ways to make sex different from it. This might be in really big ways – never with the lights on/off, never partly clothed, never with loud music, etc. Or it might be something quite small that you use as your anchor. This is something that you mentally come back to as often as you need to remind yourself that the abuse is not happening now, that it is over in the past and this is a new good experience. It might be music, incense, something you can see or touch, a bracelet, anything that has absolutely no link to the abuse or abuser/s. It’s even better if it’s something that has a strong link with your life now, with feeling safe or strong or sexy or loved.

If memories are causing you troubles, you may be an eyes open person for awhile. It might be important to keep eye contact, to stay face to face so you are connected to the person you’re with right now, instead of memories. Body memories can also be difficult, where sensations can be triggered. If this is causing you difficulties, try having a think about ways to manage the triggers. You may find it’s best to avoid sensations in those areas if possible – not being touched on your wrists for example, or certain postures – not having another person’s body on yours, or conversely you may find you can overwhelm bad memory sensations with new positive ones.

If the abuse you experienced is hazy in your memory, was threatened rather than acted out, or occurred in a relationship that moved between sex and rape at different times, it may be more difficult for you to avoid certain things and the undifferentiated distress may cause you a lot of troubles. If you feel guilty or like you shouldn’t let it affect you, this will probably make your distress even worse. Another challenge, particularly for those abused as children, is when your development has been affected by abuse, and certain things have become sexualized that you would not have chosen to react to in that way, such as being powerless. This kind of ‘programming’ can be resilient and distressing, but over time your voice is far more powerful than anyone else’s and you do have the power and the right to choose what you will act on and re-enforce within yourself. Some people gain a sense of power over these things by choosing to bring them into a new relationship, exploring in safe ways the themes of power, or being trapped, for example. Others choose to leave them behind and find new things to make part of their sexual world. Another challenge is if self-harm and abuse have become entangled for you, and you punish and humiliate yourself through putting yourself in situations where you will likely be sexually abused, or where you find yourself replaying the abuse. Sex can be powerful and we can play out in it all kinds of other issues and drives. Try to disentangle it from those that harm you. Be very careful of the harm that re-enacting powerlessness, fear, being silenced, and not having the right to control what happens to your body can do – not only to you, but also to your partner.

If you have a panic attack – it’s not the end of the world. It does help if your partner knows that one may happen, and better yet, has had experience with how to best comfort and reassure you during one! It could be very distressing for them to think they’ve hurt or upset you if they don’t know that you may have a reaction. You may have all kinds of reactions – shaking, crying, needing to be hugged, not being able to bear touch, needing to be spoken to and reassured that you’re safe and loved, to be able to run away until you feel calmer… It doesn’t mean you’ve failed, or that anything’s wrong with you. You may on the other hand feel numb, disconnected, spacey, you may become dissociative, feel like you’re floating or have flashbacks. None of these will actually harm you, although they may be very uncomfortable or embarrassing. They may mean that you’re moving too fast, or that you’re exactly where you should be. Only you can work that out. If you expect to have a huge reaction and don’t – that’s okay too! It doesn’t take anything away from how bad your experiences of abuse were.

Intimacy is also related to how we feel about ourselves. Many people who’ve been sexually abused feel very disconnected from their own bodies, and have a pervasive sense of shame. If you hate how you look and feel, it is difficult to inhabit your own body to enjoy the sensual feelings of intimacy. You need to find a way back in, a link to yourself where you see your own body as yours, on your side, where you are able to befriend it, love it, nurture it, and enjoy it. While they can be very confronting, a mirror may be your friend here, a place in which you can try to see your body with compassion instead of loathing. The sensuality of everyday life – the feel of soft materials, the tickle of grass, the warmth of the sun, these can be safe ways to start to re-engage your senses and inhabit your body. Physical exercise or dance might help you to take care of it and enjoy it.

Some of us get confused and find sex difficult to comprehend while abuse or rape seems ‘normal’. It might be that you are still in contact with the abuser or have positive feelings for them or good memories of their kindness and care. This can be a kind of Stockholming. It might be that you used abuse as proof that someone somewhere had found you attractive, to shore up your low self esteem. You may only feel certain that you are desired if the other person is dominating you. There is another way, and it’s not dull or boring or lifeless. It’s about respect and safety and freedom and love. There’s a kind of depth and innocence and darkness to it that makes abuse feel sordid rather than reassuring. It’s worth going looking for.

Lastly – all sex is not the same. There’s many different kinds. Some are fun or even funny, light hearted and silly. There’s different experiences, emotions, degrees of connection, some takes all night and starts with the finger tips, there’s the rumbly tumbly hair in your face kind, and the looking deeply into each other’s eyes kind, and the quick the flatmate will be home in a minute kind, warm summer nights or stormy autumn afternoons or freezing cold winter mornings snuggled under the blankets kind. Keep this in mind if the idea of ever being able to enjoy sex again feels like an impossible dream. Perhaps some of these kinds of sex have been less tainted than others, are less risky, have less triggers and memories waiting to surface. You reclaim any territory by starting with the easiest bit, and making slow progress, first this and then that, not by trying to take on everything at once and getting totally overwhelmed. Maybe something in particular will be easiest to be inspired by first.

If you’re struggling with issues in this area, I’d recommend looking for some information and support. You are not alone! There are many, many people out there trying to work their way through these issues. If nothing here has been helpful, perhaps you’ll find some suggestions better suited to you in some books about recovering from sexual abuse. SHineSA are also available for information, free counselling and health checkups, I would absolutely recommend them. Many of us are pretty short on good sound information about the complicated world of sex – safe sex, pregnancy, anatomy, what are myths, and without good information sex can be intimidating and confusing! You may find that expanding on your knowledge is helpful. If you are really worried about something sexual, or wanting to but not enjoying sex I would recommend doing some reading or seeking out some counselling. Sexual problems can feel overwhelming and impossible, but as you work things through and learn more, hopefully you’ll be able to put all the right ingredients together to reclaim an enjoyable sex life. It is possible! Good luck and take care.

I’ve written a series about emotionally safer sex with more skills and suggestions – start with Safe sex 1: Checking In. If your, or your partners abusive experience was recent, you could also try reading 5 hours after an assaultSupporting someone after trauma, or My experience of sexual health counselling. None of these have graphic abuse accounts or descriptions of sex.

Newsletter 2

Here’s the latest Dissociation Link newsletter, you can access it in pdf form here to download, print or share easily. Please feel free to pass it along. 🙂

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Should we ‘never be a victim’?

Sometimes I come across the instruction to ‘never be a victim’.

It makes my skin crawl. The implication that in every situation you have a choice, that to be victimised is something you would choose, is just the kind of thing that makes me want to take those people to the places on the very edge of life. The places where you find out what you would do, rather than die. Where you learn about sadism, death, brutality, and brokenness. Where life or death comes down to whether you ducked quickly enough, wore shoes that are good for running that day, or if someone walked in the room just at that moment. They simply cannot be imagined. Only through experience and empathy do we glimpse the horror and misery of being a victim.

The other side of this, is that sometimes, there is a choice. And I still disagree with the instruction.

There are worse things to be in this world than a victim. Sometimes the choices we face are terrible ones. The world of violence and abuse is narrowed down to very few roles. Sometimes there is only a choice between being victim or perpetrator. I know that choice. I’ve felt that temptation, to reclaim power and to inflict fear. I know what it feels like to be wounded and full of rage and want almost more than anything to do to others as has been done to me. To see fear in their eyes and feel powerful instead of small.

Sometimes, choosing to be a victim is an act of courage.

The last time I was made to feel terrified, humiliated, devastated, there was a moment when all the noise had gone and I was alone in a room and I felt the world pause. Two paths opened before me. In one, I took my freedom and ran. In the other, I turned and hunted, furious and seeking to reverse the roles. I weighed my choices with great care, with passion.

I said in my heart, I will let you do this to me. It ends here. I accept, for just this moment, the role you have placed me in. I have been victimised. I’ve fought and you were more powerful. I’m wounded but still recognisable. If I take up the role of perpetrator now, I’ll lose even that. I’ll lose myself. So, I take the hits and I walk away. No revenge. It is human to be frail. It is human to hurt. I’m still who I was. There is a nobility in retaining the power to chose how you will respond, in refusing to be debased by their behaviour. You cannot hold others accountable for actions you choose to overlook in yourself.

It is sadly human to be driven by baser impulses, to tear down, to dehumanise, to humiliate and destroy. It is also incredibly human to rise above this, to be moved by compassion, to act with courage, to hold yourself to a higher standard. Humiliating experiences take away our sense of meaning and introduce us to a world where power is the only thing that matters. It is at times very difficult to hold onto our own moral code when it is seen only as weakness and inferiority. Many violent people believe that we all would behave as they do if only we had the strength. Under their sway we can become lost in their perspectives and forget the reasons we had for choosing to live as we do. Forget that those choices are not for their benefit, but for the protection of our own heart. Some abusers deliberately set up situations where they require the abasement of their target, where they turn mothers against children, coerce siblings into betraying one another, entangle a whole classroom of children into bullying the most vulnerable child. This betrayal feeds into their fantasy that all strength is power and all restraint and self control is only weakness masquerading as virtue.

People who have been victimised often struggle with violence revenge fantasies. Each person finds their own way through an understanding of these, and a way to make peace with them. Sometimes people who have been victimised fought back. I can still taste the blood of someone I once bit when he held me down. The aftermath of being able to fight back can be both empowering and destabilising. Some of us have exercised violence in the protection of someone else. Some of us have first run, and then gone hunting those who once preyed upon us. Some of us have run, and then gone hunting those weaker than ourselves. Some of us take our own pain as permission to wound and alienate people around us who we decide have been less hurt than ourselves. All of us must reconcile ourselves to our own capacity for violence, and find our own morality in choices we have made under incredibly difficult circumstances.

For me there is a peace in knowing that unless I voluntarily surrender my choice to be a person who acts from love and honour, it cannot be easily taken from me. There are things within us that are not easily destroyed, broken as we may feel.

This is why I get angry at the instruction to never be a victim. Even in being victimised there can be a virtue. Even in brokenness there is something whole, something deeply and beautifully human about choosing to live with scars rather than writing our pain in other people’s blood.

I’ll be speaking at the Voice Hearers Conference!

The good news keeps coming! Both abstracts have been accepted, so I’ll be travelling to Melbourne in February next year to speak at the Voice Hearer’s conference with fellow Peer Worker Jenny Benham. I’m so pleased! Starting to mull over how I might be able to paint aspects of the talk and if some poems such as this or this might be appropriate to share the dissociative experience… I like to make the talks less clinical and more personal where I can, especially in the context of a conference where everyone will be quite overloaded with talks and lots of information. I’ve a few series of artworks painted specifically for talks now, one about Peer Work that I gave in Melbourne earlier this year, one about Consumer Led Service Delivery that I gave at the state mental health conference Sharing Excellence, this little one about Creativity that I gave for mental health week… I think that they will make lovely booklets.

Using creativity to overcome difficult obstacles in life

We’re planning to get input from both Sound Minds (our Voice Hearer‘s group) and Bridges so that Jenny and myself won’t just be sharing our experiences, but going as ambassadors to share the thoughts of the other people in the groups.

I’m also planning to use my time there to meet up with some people who are interested in starting their own Bridges type group in Melbourne and hopefully help however I can to get that off the ground. Exciting developments!

The Cert IV in Peer Work information session was very interesting today, and I’m now contemplating how I might be able to squeeze that into next year as well…

I’m going to be published!

I’ve just received some great news; I’m going to be published! Earlier this year myself and a colleague Cary gave a talk for the TheMHS conference (the annual Australia/New Zealand mental health conference) about using Grounding Techniques and Grounding Kits to manage Dissociation. It went really well! Afterwards we were invited to write and submit a paper on that topic, at terribly short notice. We worked very hard on it, and managed to finish in time for the deadline.

Most excitingly, I’ve just heard that the paper has been accepted and will be published early next year in the TheMHS 2011 Book of Proceedings in the ‘Recommended Reading’ section. I’ll let you know when it’s available for purchase. 🙂

And in other great news, I’ve just found out that I’ve been awarded a subsidy entrance to the Voice Hearer’s Conference in Victoria next year! (You can read what I’m hoping to talk about there here) Wow, what an amazing day!

I’m so exhausted from all the hard work and long hours with my various projects. Last night I slept for 12 hours which was badly needed. I’ve been running on 5 a night for weeks and the pain is becoming unbearable. (My physical illness symptoms such as joint pain become a lot worse when I’m sleep deprived) So I’m enjoying having days off wherever I can and hoping to catch up on a lot of sleep before the excitement of Tafe and talks and all the new projects next year I’m so looking forward to start up again. 🙂

Training Opportunities

Just a quick word again that the new catalogue for the WEA is out, and there is some great classes being offered. One of these is by Lee Pascoe, hypnotherapist, about how to use Self Hypnosis to overcome issues such as anxiety. I did this last year and found it very helpful in overcoming my fear of flying. It will be held over two sessions this time, Friday Jan 6th and the following Monday, 3 hours each. The concession fee is $42.

For artists, there’s a class on Professional Development I like the look of, 9am Sat February 4th for four hours, the fee is $35. It purports to offer “practical advice for professional artists. Topics include aspects of approaching leading commercial galleries; including creating a professional CV, upgrading portfolios, and image management.”

The last thing that caught my eye you may be interested in is a class on “Presentation Story Telling” that apparently offers to develop speaking and presentation skills. (Peer Workers take note!) It’s on a Thursday evening at 5.45pm for three weeks starting on the 23rd of February. The concession fee is $36. I haven’t tried this one myself so again I can’t vouch for it specifically, but I have generally learned a lot from the WEA classes I’ve attended. (and I’ve done a lot of them!)

For those of us with an interest in Peer Work (this is someone who uses their personal experience around mental illness to educate and encourage others) there are a couple more training opportunities coming up you may be interested in.

Firstly, a new Certificate 4 in Peer Work is going to be offered for the first time next year. Here’s the information I have about it so far:

The Peer Work Project, in collaboration with TAFE SA, has received funding to conduct a Certificate IV in Peer Work during Semester 1 of 2012.  If you are currently employed as a Peer Worker or would like to work in this area and are interested in studying Cert IV in Peer Work, then please call Baptist Care SA to express your interest in attending an information session and find out more about the:

·         Application and selection process
·         Number of contact days and length of course
·         Cost (significantly subsidized)
·         Assessments

When: Tuesday 13th December 2011 from 3pm – 4:30pm 
Where: Glen Osmond Baptist Church, Corner of Glen Osmond Rd and Fisher St, Myrtle Bank
 

Please let us know if you will be attending, or if you have any queries, by phoning us on         8338 6799 or by emailing peerwork@baptistcaresa.org.au

There’s also information sessions coming up about the training to become a volunteer telephone counsellor with Lifeline. I haven’t done this myself but my understanding is that the training is held in good standing in the health care community. They will be from 6pm – 7.30pm on

– Wednesday 14th December
– Tuesday 17th January
– Thursday 2nd Febuary

Held at UnitingCare Wesley, Way Hall, First Floor, Pitt Street Adelaide. Please phone their administration on 8202 5820 to attend.

My talk at Mifsa

I drove down to Mifsa down south yesterday to give a talk about some suggestions to cope with the Christmas season. It went really well I thought, there was a small group of about a dozen people. I shared about how I find Christmas a bit of a vulnerable time for me, and some reasons why that’s the case. I find a lot of the information given to folks with mental illness is about being sensible, and while it’s important to know things like – alcohol may interact badly with your medication, not having enough sleep may set off a manic episode etc, I find I get heartily sick of lectures about looking after myself better that all seem to boil down to never having fun again or taking any risks.

So, I tried to give out important information like make sure you’ve got enough meds/scripts to get you through when all the services close, but in way that I hope was a bit more inspiring. The whole point of taking care of yourself is to be able to function to your best and enjoy life! It’s not about being submissive or obedient or a ‘good patient’. It’s about not having a major crash, not paying too high a price for trying to enjoy yourself, not having your doctor get back from holidays to give you a talking to about how badly you spun out.

I really enjoyed it! I like to personalise and humanise my talks as much as possible, and it’s just awesome to feel people unwind a bit when you share your own frailties and struggles with them. It was really exciting to hear people feeling like they had permission to take control of the Christmas season and turn it into what they liked instead of feeling run over by it. If they like solitude to turn down invitations and stay home with a stack of library books. If they are lonely to check the Messenger every week for free events, book in time to catch up with friends or family… I shared that last year I was very lonely on Christmas day so I went to a lunch at the Salvos and it really cheered me up. I also brought in some examples of cheap handmade gifts I’d made over the years to help inspire people that presents didn’t have to be expensive and competitive, they could be small and meaningful. That seemed to go down well.

This is the awesome thing about peer work, it turns times in your life that were painful and even humiliating, into something you can draw on to help lessen the pain and humiliation of other people going through similar things. I love it. I love it everytime I can use the word ‘we’ instead of ‘you’ when I’m talking to people who already feel marginalised, inferior, disempowered. I love being able to talk, share, and listen as one of them. I know just how powerful it is to meet people who are living well having come through something you’re struggling with, because I have those people in my life too, who’ve inspired and encouraged me by treating me as human and by letting me see the vulnerabilities they are overcoming. I am so privileged to have people come and listen to me, to share about their struggles and let me be part of them seeing new ways around obstacles and challenges. I’m so glad I’m doing this.

Poem – She falls

walking into the adult world
layers of illusions peeling away
and the emptiness beneath us all coming into view

the veneer of our security so thin
we are a lost race on a world
falling into space and our dreams
are a taste of death, first thing in the morning
and the last hour of night

in my minds eye
everyone I love is gone
it falls away

no island so remote
as to be beyond the touch of tragedy
we destroy it all and it destroys us

we live on borrowed time and the pain
catches up in the end
we pay for all our sweet days
all the debts are collected

There is no peace.

there are moments of joy.
touch on my skin
love in their eyes
dreams in my heart

but the dark always comes
and the light is so frail

all our hopes unwoven
our allotted happiness
spent like sand through glass

what does it all mean?
I hold her hand
and I can feel her slipping
night has its teeth in her skin

We live, we love and we die.

each moment is pulled like a cloth
over the emptiness beneath us
over the screaming terror and the helplessness
the hours that torture and the dreams that sustain

We fly a little, and then we fall.

Getting gung-ho about treatment

There’s a lot of room for different approaches to recovery from mental illness. Some people love affirmations, others write journals, some use humour… Something I’ve noticed doesn’t seem to work well very often is an aggressive approach to getting rid of dissociation. Some folks, once they’ve discovered what it is, get very keen about helping people to never dissociate. This dubious goal rather concerns me. Firstly, my personal approach to mental illness is about focusing on what I want rather than what I don’t. I mean, (one of) my goals is to have a passionate, meaningful life, one in which I can participate as fully as possible. My goal is not to get rid of dissociation. They sound similar but really they’re not. Certainly, being crippled by aspects of mental illness is something to work on, but it’s in pursuit of a higher goal. It is never the focus in and of itself. What does this mean? It means whenever my dissociation is low enough for me to enjoy life, I’m not sitting in therapy trying to get rid of the last of it, I’m painting! I’m down at the beach, out with friends, reading books, having a life. Every chance I get. These experiences give me the sustenance I need to get through bad times, they build my self esteem, give me hope, a sense of control over my own life, great comfort and joy. This is what it’s all about. I don’t mind limping a little, and I know that a great deal of the healing and recovery we need happens in normal life, in everyday relationships, in art and running and writing and standing in the rain.

Focusing on getting rid of a symptom like dissociation sets the stage for power struggles, for making assumptions about what is healthy, and for a ‘Russian roulette’ of symptom swapping. Dissociation for many people serves as a protective mechanism. Think of it as a fuse blowing in a house with dangerous wiring. You don’t wire over the fuse, or you risk burning down the house. You sort out the wiring problems so the house is safe, then you work on resetting the fuse. Good therapy always starts with helping people feel safe, and swapping out harmful coping mechanisms with healthy ones. You don’t just start kicking crutches out.

Therapists can become very frustrated with highly dissociative clients, thinking that if they could get rid of the dissociation, then they could get some ‘real’ therapy done. Trying to beat down dissociative defenses with an anxious client is likely make them worse. If therapy is perceived as a threat, the mind will continue to put all it’s energy into disconnecting as much as possible, using any method it can come up with. 

Not only can dissociation be protective, but the current definitions are so broad that getting rid of it entirely doesn’t sound like a good goal to me. If any form of disconnection from the present moment is defined as a form of dissociation, then we need some. We need space to daydream, time to get lost in our thoughts, in books or films. This is not black and white ‘dissociation bad’, ‘connection good’. In order to focus deeply, we disconnect from distractions around us. Creative people often describe this lack of awareness when they are deeply involved in their work. It’s healthy, inspiring, magic. This can be called ‘flow‘, or being ‘in the zone’, absolutely immersed in your task. Experiences of flow are thought to be highly protective against depression and anxiety. Some theories about hypnotic states are that we are all going into and out of different states throughout our days, without even noticing. We disconnect from events around us to ruminate and process thoughts and feelings, drive on auto-pilot, focus intensely during a stressful conversation, warm to friends and ‘come out of ourselves’ in their company, all the time changing our level of awareness of things going on around us and inside us. There can be a natural kind of rhythm to this process, we can have our own cycles of energy and focus, times when we are most focused externally and others when we are most aware of our inner lives. In some of these states we are very receptive, taking in deeply the things we say to ourselves, at others we have all our psychological defenses up. 

The thought of holding up a life where none of these things happen as the goal to strive for is horrifying to me. I value being able to disconnect from the day to day to find a place my heart soars. While I loathe being lost in severe dissociation, unable to see, feel, smell or taste, I also hate the ‘flatland’ of a totally symptom free life that somehow keeps being set up as the goal for people like me. A little madness is not a bad thing, a little dissociation that frees us to dream, likewise. The goal is about freedom, hope, peace, meaning, love, connection, art… being human. Even our weaknesses and limitations can be part of that goal. 

What I need when I’m lost and trying to find my way back isn’t someone trying to carve dissociation out of me like a tumour. I need to find a way back, like coaxing a small terrified creature to come out of the dark. The right person holding my hand can be enough to bring me home. Standing in a thunderstorm can be the intense sense of connection I need for a mind in flight to re-inhabit my body. Sometimes everyday life doesn’t have a strong enough call, it’s the song of the sublime that reminds me of who I am. It’s poems that make me cry and music that makes me feel safe and books that are paper receptacles for my shattered heart. These things that remind me that I am human, that I want to be alive, and that the world is deeper, sadder, richer and stranger than we think. 

Voice Hearers Conference

I found out this week about a Voice Hearer’s Conference in Victoria early next year! I’m quite excited and hoping to attend. I’d also love to speak there. So, I’ve submitted an application for a subsidy for the conference fees, and also two abstracts (written at very short notice!) for possible talks and a short biography. It would be great to have a chance to listen to some other wonderful speakers passionate about voice hearing. I’d also love the chance to share about how voice hearing and dissociation can be related, because in traditional psychiatry voice hearing has been seen as a psychotic symptom. Not all or even most people who experience severe dissociation hear voices, but some people do, sometimes as part of DID or multiplicity. The experience can be similar to those who struggle with psychotic issues such as delusions and disorganised thinking, but there are some differences too and I’d love to share about that and suggestions for approaches working with the voices of people who are dissociative. 

So, here’s my biography, which had to be under 80 words:

I experience voices as part of my dissociative disorder. I co-facilitate two groups at MIFSA, Sound Minds and Bridges, and love delivering talks about mental health. These groups have made a tremendous difference in my life, I’ve learned so much and been able to better manage my own conditions and find ways to ‘pay it forward’. I’m also a poet, artist, and blogger, passionate about educating, inspiring, and reducing stigma around experiences such as mental illness.

And here’s the abstract, under 200 words:

I will share my personal experiences with ‘mental illness’ and voice hearing. I was diagnosed with Posttraumatic Stress Disorder when I was 14, and later a Dissociative disorder, although my troubles started much younger. I now co-facilitate groups, one of them for voice hearers. I will share the experience of voice hearing from a dissociative perspective, other troubling experiences associated with this, and how my recovery journey is unfolding. I will explore the critical role of creativity in my health, and how I’ve worked to develop greater self-awareness and self-compassion to reduce conflict with my voices. Dissociation is an often misunderstood and feared experience, I will explain common dissociative symptoms, how they feel and affect me, and what I find helpful. For many people who hear voices as a part of a dissociative disorder, the classic episodes of wellness and sickness don’t apply, and identity is tangled with the experiences in a way that can make ‘me’ difficult to separate from the ‘illness’. I hope to inspire people to feel more comfortable and confident in navigating dissociative issues, and while the recovery process is very individual I want to encourage people that it is possible to live well with voices.  

I’ve also teamed up with a friend, Jenny, we’d love to present a talk together about how successful our voice hearer’s group Sound Minds has been, and how Bridges has developed from it. Here’s her biography:

I am currently employed at The Mental Illness Fellowship of SA as a peer facilitator of ‘Sound Minds’ a group supporting people who experience voices and as a Community Educator. My voices started at about 5yrs of age. At 22 following a car accident these voices came to the attention of the hospital staff. Psychotic illness was diagnosed. I am now learning the power of living beyond illness. It’s my passion to share this knowledge and help others.

Jenny also contributes to Mindshare, you can see her work here. We had a quick chat to both groups this week to see what they thought of the idea of Jenny and myself not talking so much from our own experiences but going to the conference as ambassadors of the groups, putting quotes and thoughts of group members into the talk. They sounded excited about that so that’s what we’ll do. Here’s our abstract for a joint presentation:

Jenny and Sarah each experience voices and are both peer facilitators of a SA Voice Hearer’s group called Sound Minds. We will share the development of this group from inception in 2009 to now. Sound Minds has encountered challenges and difficulties such as months of low attendance, and the instability of being an open group with regular new members. Over time, the group has grown and developed into a strong, caring community of people with very diverse experiences. We are thrilled with the success of this project and will share members experiences of the difference Sound Minds has made in our lives and our ability to manage our voices. This format has been so successful that in July 2011, after much planning, Sarah started a sister group called Bridges. Bridges runs on the same principles as Sound Minds but specifically with people wanting support for experiences around dissociation and/or multiplicity rather than voice hearing. The principles have translated well and Bridges is also developing into a strong, useful resource. We’re very excited by the benefits both groups are providing to their members, and will share how the voice hearing group format has broader relevance in mental health.

Fingers crossed! Even if this one isn’t our time, I’m excited about doing talks about these topics and I’m sure we’ll give them somewhere.

Trauma recovery – traumatic replay

If you’ve read a previous post of mine, about Territory, you may have concluded that I sound like a pretty fragile kind of person. And, to a certain extent, you’d be right. However, if you’ve ever seen me stand up to someone twice my size who’s screaming into my face, you might have to revise your opinion. I’m also really strong.

One of the difficult things about trauma is that it can leave you feeling so weak and powerless. To be in situations where your 100% best efforts could not stop terrible things from happening is crushing. Part of you goes dead inside. The hypervigilence part of PTSD, where you feel on ‘red alert’ all the time, just watching for the next terrible thing to happen, is incredibly exhausting. In some ways, it’s actually worse than having terrible things happen.

Let me run that past you again.

When awful things are happening I feel awful. I feel numb. I feel furious. I fight like hell. I feel strong. I feel helpless. I feel vindicated. And other people say things to me like “How are you still going?”, with respect.

When nothing awful is happening I still feel awful, numb, furious, but I have nothing to fight. I feel weak, helpless, stupid, pathetic, and full of self loathing. And other people say things to me like “What is wrong with you?”, with contempt.

There’s a really tricky effect of trauma called traumatic replay, where sometimes people keep somehow putting themselves in terrible situations. This in NO way means they are responsible for abuse! The person doing the abuse is always responsible for it! I shouldn’t have to say that, but the inclination to blame the victim is so strong that we all need reminding. Trauma can upset your mental wiring, your internal dials and alarms about safety and danger can be a bit unreliable. We try to walk straight and look out for ourselves but find ourselves listing to the left and drifting off course. This article is about some of the things that can drive that, so we can be aware of them in ourselves and override it. It’s not an excuse to blame us for accidentally drifting into dangerous territory and getting hurt.

There’s a few different things that can drive traumatic replay, and the above dynamic is one of them. To some extent, I’m ‘built’ to handle crisis, it’s the come down afterwards that kills me. I sometimes have to fight my own impulse to put myself in dangerous situations or spent time with aggressive people simply because they make me feel strong. I have all my psychological armor on, and suddenly I feel like I can handle anything. This can be pretty appealing. It’s also phenomenally dangerous, and difficult to understand if you haven’t personally experienced it! In a way, its like grief, everyone turns up in the first few weeks full of care. You’re so blasted numb with grief at that point you probably can’t even recognise most of them. Six months down the track you’re crying yourself hoarse and everyone else has moved on. People harmed by trauma are often told to move on. Terrible things can fragment you, part of you lives in the here and now, and part of you stays trapped in a dark place. Traumatised people trying frantically to move on are sometimes tearing themselves further away from a piece of themselves. Finding a way to balance that need to honour the past with the equally important need to connect to the present can be really difficult. But it can be done!

Another dynamic that feeds into traumatic replay is the refusal to accept that you were genuinely powerless to make that situation come out any better. That is really hard to accept. Blaming yourself can be easier because it preserves the illusion that if you had just done this or that, things would have been okay. So you get back into it, in one form or another, hoping that this time you will make it work out right. You can lose a lot of your life testing that theory.

You can be hurt because you’ve been so strongly conditioned to be obedient and compliant that you shut down and obey when threatened, because that’s how you’ve always survived before.

You can also seek out terrible things because waiting for them to happen – and being absolutely certain that they will, can be more distressing than having them happen. This is similar to the domestic violence cycle where the abused partner starts to trigger the violent reaction just to get out of the exhausting stage where tension is rising and violence is imminent and inevitable.

Really twisted up thinking that you deserve nasty things to happen to you can have you seeking them out. Self harm takes many forms and some of us are adept at finding other people who are more than willing to hurt us. Obviously, abusive people tend to foster this kind of self loathing in the people they hurt.

Familiarity can make you choose awful situations or relationships because sometimes it takes us a while to work out that ‘feels comfortably familiar’ actually may mean ‘is toxic’. Good environments can feel weird, we can feel out of place and awkward, it’s almost like culture shock, we don’t know the ‘rules’ here. I had an odd experience like that once, a man I was close to had some bad news suddenly and went quiet. I read the quietness and disappeared as quickly as I could. He was surprised and confused by my behaviour and later called me out on it, telling me how uncaring I’d been. That really surprised me, in my life, men getting upset and going quiet meant get out the way as quickly as possible, or they will blow up. I was applying a social norm to a different environment where it wasn’t the norm. Miscommunications such as this abound, and opportunities for the Gap to open up are everywhere. So people stick to what they know, even if it’s horrible.

Sometimes, limping around the ‘normal world’ feeling like a broken person is just too hard when we can feel like somebody significant in the trauma underworld of abusers and abused. We’d rather eat and be eaten than face innocence lost and the appalling misconceptions about how victims ‘ask for it’, ‘deserve it’, ‘let it happen’, ‘enjoy it’, or should ‘just choose not to be victims‘. Abusive people can be adept at making us feel special; we are the centre of their world even though their attentions are painful.

The last thing I’ve noticed can feed into traumatic reply is a driving need to deny that a trauma has had an impact upon us. Being victimised can be such a terrible thing to process, that we were made a victim can be so painful and overwhelming that we deny it entirely. We go out of our way to flaunt our lack of fear. We deliberately do dangerous things to prove that we’re not a victim. We ignore all our warning systems that say ‘that person feels creepy’, ‘that car park is pretty dark and deserted’, ‘I don’t like the way they touch me’, and in an attempt to prove how unaffected by trauma we are, we can put ourselves in the kinds of dangerous situations that no one else would.

It’s worth mentioning too, that some awful stuff happens in life. Just because you get a double dose doesn’t necessarily mean any of these are in play. Storms happen, sometimes we’re just unlucky.

Psychiatry used to assess these kinds of issues as masochism. Now there’s a better understanding of the kind of damage trauma can do to someone. Pain may be the result of these behaviours, but the desire for it is not usually what drives them. We’re seeking strength, a sense of undamaged identity, to feel like we control our own lives, to feel loved or powerful or right. It’s just that sometimes these desires take us to dark places.

I feel the pull of some of these. My thinking gets twisted, I want to feel strong even if it means I’m being torn apart, I want to be proved right even if it means that another horrible thing happens, I want to get it over with because I know it’s coming anyway, I want to be possessed by them even though they make me hate myself.

I fight it because I try to believe – even when I can’t feel it – that I don’t deserve this. Because I believe in a life that’s richer and deeper than the roles of abuser and abused. Because I feel such compassion for other people, and you can’t really help when you’re trapped in the underworld yourself. Because amazing people like Judith Herman have written books in which I see myself reflected without hatred or humiliation, and I find hope, and I want other people to find hope too. I try to find ways to accept the brutal lessons without letting them destroy me, and to grow beautiful things out of anguish and degradation. I know my own damaged wiring. I know the lure of self destruction. On the bad days I cry, “protect me from what I want”. And I hold on, and I hold on, until it eases.

Newsletter!

Well, this is something new from me! Today I wrote a short newsletter to distribute to the people who’d asked to be on a mailing list about dissociative information. It took a surprisingly long time to do, even though I used some articles from this blog! It’s not perfect but I hope it does the job and if the feedback is positive I’ll look at making it a regular thing to keep people in the loop. Just putting together a mailing list that makes some kind of sense, is private and secure, but can be shared between myself, Ben, and Cary (we’re the three founding members of this little community group who’ve been setting up Bridges and the talks and other Resources) has been quite a headache! I’ve never done anything like this before and it’s all learning on the go.

It’s taken me a couple of hours of reading through forums to work out how to embed the newsletter on this blog, but here we are! You can also go directly to the document here to download it, print or email it if you wish. Please feel free to pass it on to anyone who may find it of use. 🙂
(function() { var scribd = document.createElement(“script”); scribd.type = “text/javascript”; scribd.async = true; scribd.src = “http://www.scribd.com/javascripts/embed_code/inject.js”; var s = document.getElementsByTagName(“script”)[0]; s.parentNode.insertBefore(scribd, s); })();
So, there you go. I think I’m just a glutton for punishment, making extra work for myself! I’d love to hear any feedback or constructive criticism you may have about it. 🙂

Trauma Recovery – Territory

The idea of territory can be a big issue for some people who’ve come through trauma, particularly the ‘interpersonal’ kind – that is caused by other people rather than natural disasters or accidents. It can be a little difficult to describe the kind of chronic anxiety that people can struggle with. Certain kinds of environments can become really stressful such as crowded events, places that are similar to the place where something bad once happened to you, or new places. I’ve had big troubles in this area myself, which is pretty common for someone with PTSD. In my case, I’ve found trying to take on environments like a university campus really challenging and stressful. I’ve found that thinking of this stress in terms of territory has been helpful for me.

On bad days, I don’t feel safe anywhere. It’s hard to even remember what it was like to feel safe. On slightly better days, there’s pockets of the world where I feel like I’m allowed to exist. These spaces feel like my territory. I know them well, I’m comfortable in them, I know where to retreat if I need to, where the exits are, the quiet spots. I feel much more comfortable in these spaces. Home, all being well, is a place like this. I feel much more relaxed because the space is mine, I’m very familiar with it, and I feel like I have the right to enforce my own wishes and preferences. These two aspects are key to my concept of territory; being very familiar with a place, and feeling like I have the right to be there as I am.

When I’ve been really struggling, my territory has shrunk down to nothing and nowhere has felt like my space. Over time, I’ve gained ground, partly by removing myself from some bad environments. I’ve worked on making some spaces feel like my own, such as my own home. The key then has been to try and expand my territory so that there are other environments I feel comfortable in, otherwise my world gets very small. One of the places I was first able to do this was public libraries. Libraries have traditionally been my haven, they are fairly quiet, not usually frequented by bullies, and full of books and information – and internet access, which was pretty important before I had my own computer and connection! One of my local libraries had an indoor garden which I immediately fell in love with. Another had comfy chairs and one of those vending machines with $1.80 nestle hot chocolates. I quickly felt at home. These places became pockets of new territory, like a chain of islands I visited. My goal was greater freedom so I kept adding new places over time, the local supermarket once I’d become really familiar with it, the walking track at the nearby park, a community center.

I’ve moved house a lot over the past 5 years, and I find this very disruptive. The dissociation means it takes a while for information like that to be processed. In a new house I’ll wake in the dark and not know where I am, get disoriented and lost easily when trying to navigate, drive back to my old place when I’m tired. One of the things I do is thoroughly explore a new area. I walk to the nearest parks, find fast food places for emergency meals, the chemist, go read all the community notice boards, collect the information at the local library, read the council pamphlets about community events. Knowing an area well helps me feel more comfortable in it and reduces that sense of permanent disorientation.

In tackling a new environment I take a similar approach. Let’s imagine a new community center. I’d go there sometime there weren’t many people, and investigate. Where are the toilets? The kitchen? The exits? Is there any quiet nook I could retreat to if I needed? Any garden or outside area to escape to? Is the physical environment welcoming or really challenging? Welcoming environments for me have open spaces, comfy seats, and lots of natural light. I’m less comfortable in squeaky clean corporate environments, and poor lighting, cramped space, closed doors and barred windows set my teeth on edge. Then there’s the issue of my place in this environment. How will it function? Are there areas I can’t go? Is it pretty relaxed? Would I get in trouble for ducking to the kitchen for a drink or sitting with my feet on the couch? The more rules and restrictions an environment places on me, the less it feels like my territory, and the more I’m a guest – in some spaces a barely tolerated guest. Where these rules are things I’d never do anyway – please don’t break the windows, it causes me less stress. Where they impinge on my ability to relax and function independently – I have to ask permission to go to the toilet, a staff member will bring me a glass of water if I ask for one, the less comfortable I am in that environment.

If I feel pretty comfortable to be myself, that taking the initiative or operating independently wont get me into trouble, then another thing I do to help myself cope with a new place is turn up early. If there’s an event on at 2pm I want to attend, but I’m feeling anxious, I might turn up at 1.30pm. It may be enough to just sit in my car, or I might be allowed to go and wait in the space. Not walking into a room already full of people but being one of the first to arrive helps me to feel I have a right to be there and that the space is part of my territory. This isn’t a dominating thing, I very much want other people to feel at home there too!

Volunteering helps me a lot with this issue too. Being part of the behind the scenes where you may be there at funny hours or when the place is normally closed, you often have access to screened areas and will spend downtime having a giggle with other volunteers after projects have been completed really help me to feel at home in a difficult environment. When you know where the glasses are kept, that the study door has to be bumped with your hip because it sticks in the heat, and that the third armchair is in that spot to cover a stain on the carpet you feel a much stronger sense of belonging and territory.

It’s not just difficult rules and hierarchy that can derail my ability to feel at home somewhere, rudeness or bullying can also derail me quickly. At one place I was starting to feel more comfortable in, I had an incident one afternoon that was quite minor but affected me strongly. There was a free resource in a particular location that I wanted to access, and another person was in the space. When I asked if I could get past them they were hostile and claimed the space as theirs, with no intention to move any time soon. I wasn’t expecting this and was suddenly unsure if I would be supported by staff in my reasonable request or if the other person would be supported as having the right to occupy it. Because I was only new to this location and my anxiety was pretty high, I felt the impact of this minor conflict. I went from feeling somewhat safe and at home to feeling intensely nauseous and distressed. I suddenly wanted to escape the environment as quickly as possible, but I also knew that if I walked out it would be incredibly difficult for me to come back. In this situation I was able to find a caring staff member to sit with me in a quiet space and let me express my distress. They didn’t tell me I was over-reacting or should be more assertive, they just gave me a glass of water and some sympathy for how upsetting it can be when you encounter a conflict like that you weren’t expecting. This quickly calmed me down and left me in a place where I certainly felt uncomfortable with this other person, but not generalised outwards to the whole environment. I was able to go home and I was able to come back and keep working on making that place part of my safe territory.

Being listened to and respected even if you’re not making much sense or speaking their ‘language’ goes a long way to helping me feel safe in new environments and that my needs and wishes will count and if I stand up for them I’ll be supported. I like to know what the rules are, written and unwritten, feel I could anticipate the reaction of the people running the place to any situation, and have enough space to breathe as my own person within it. Any opportunity to occupy it on an even playing field, to become more familiar with it, or to build connections with caring people there all help me to expand my territory and be more involved in the world around me.

 

Poem – Doubt

I sit by your bed in hospital and say
I love you, don’t go
and say – endure!
and say – it will get better!

I sit by your bed and hope
you wont make a liar of me. 

I sit by your bed and beg

for one more day
of the screaming pain
the nightmare you can’t wake from
and the darkness

strangest thing – they tell me
it is you who is selfish.

How do I know I’m multiple?

At Bridges, my group for people who experience significant dissociation and/or multiplicity, sometimes people express anxiety about their diagnosis. In fact, this area is surrounded by an intense anxiety that can make it very difficult for people to think clearly or feel okay about whatever is going on for them. Obviously we don’t diagnose each other or try to answer that question for anyone one way or the other, but to let people know they’re accepted and their experience counts whatever it turns out to be.

Some people develop serious mental health troubles, get referred to a psychologist or psychiatrist, and are quickly given an accurate diagnosis that fits their experience well. Some people have a much rockier path to working out what’s going on for them, and in the areas of dissociation and multiplicity, diagnostic uncertainty are pretty common. This can be really tough! Spending long periods of time struggling with diagnoses that don’t really fit, collecting many diagnoses, or having doctors trade them in for a new one every few months can be really confusing. For many people with a dissociative disorder, this is what happens. They may spend many years and receive many different diagnoses before a doctor identifies a dissociative condition.

If you have a psychologist, they can do certain tests where they ask you questions to determine if you experience a lot of dissociation. They may also be observing the kinds of changes in you that suggest multiplicity. Sometimes other parts will communicate with them directly and clear up the uncertainty. Books about DID generally list the obvious amnesia based indicators such as finding clothes and belongings you don’t recall purchasing that aren’t your taste, being approached by people who know you by another name, losing time, finding yourself in places and not being able to recall how you travelled there. If you don’t experience severe amnesia, it’s likely you won’t get these kinds of clues.

Dissociative Identity Disorder (DID) in particular is often treated as sensational, fundamentally different from any other mental illness or condition. There is considerable debate among professionals about how to identify and treat it, and whether the condition even exists. To be fair, every other mental illness in the DSM, and a few that aren’t, also have these kinds of debates. But the sensational way DID is often treated can mean that considering it as a diagnosis carries an extra anxiety. Many people who are diagnosed with DID feel incredibly anxious about this, afraid it may be true, and also afraid it may not be. So how can you know?

Firstly, by bringing the whole concern back down to earth. DID is not special, having it does not make you special, not having it does not make you special. Unlike a medical condition where x bacteria can be shown to cause y disease, the realm of mental health is far less clear. Dissociation occurs on a continuum from normal common experiences, right through to severe disruptive mental illness. Multiplicity likewise, is not black or white, you do or you don’t. Most multiples are actually diagnosed with Other Specified Dissociative Disorder (OSDD, formerly called Dissociative Disorder Not Otherwise Specified or DDNOS) as they don’t quite meet the rigid criteria for DID. Identity instability is a common symptom of several disorders, such as Borderline Personality Disorder, and Posttraumatic Stress Disorder. There is a continuum here also, from the usual human experience of being a person with different sides or parts, different facets to their personality, through to issues around identity instability, an uncertain or absent sense of self, distinct ego states especially related to strong emotion or trauma that can be suppressed or triggered, issues with being susceptible to engaging in expected roles, through to splitting of the personality into distinct parts that perceive themselves as separate and contain their own skills, needs, hopes and memories. This isn’t black and white, and if you’re struggling somewhere on this spectrum it can take a while to work out exactly where.

That’s okay! People with psychotic symptoms may be diagnosed with schizophrenia, then schizoaffective disorder, then psychotic depression. Because none of these conditions is treated in a really sensational manner, having the label change isn’t such a big deal. It should be that way for these issues too. In the end, the label doesn’t matter. What matters is finding a framework that makes sense for you and that helps you move in the right direction. If you’re feeling really anxious and uncertain, these questions may help clarify things a little for you.

  • Do your symptoms/experiences take energy to sustain, or energy to suppress? What happens when you’re tired and worn out – do they get worse or better?
  • Do your experiences predate therapy? For example, very different handwritings, hearing voices, a complex history of mental health problems that disappear and reappear, extensive amnesia.
  • Does the framework of multiplicity make sense to you?
  • Does it help? Is it reducing or increasing stress? (it’s okay if it’s doing both)
  • What happens if you trial the idea that you’re not a multiple? Do members of your system fight to get your attention, or does the internal stress settle down? Do you function better or worse? Is there still things going on you can’t explain?
  • Do any other frameworks fit your experiences? Identity instability rather than switching between parts, trauma related ego states? Do they fit better, worse, or as well as the idea of multiplicity?
  • What do your ‘other parts’ think is going on? Do you agree or disagree?

The thing is, certain types of therapy, such as family systems therapy, parts therapy, schema therapy and so on can be useful for anyone at any place on this spectrum. The basics of trauma recovery (where appropriate) also remain the same. Issues like needing to feel safe, to build your self-awareness, learn more about how to take care of yourself and listen to yourself are also the same. The format may be a little different, but the underlying issues of developing a good, loving relationship with yourself, learning how to manage ambivalence, dealing with triggers and reactivity, reducing dissociation, calming intense distress, reconnecting to buried parts… they’re all the same. I think one of the reasons the condition of multiplicity does fascinate people is because it is just normal human functioning writ large. We can all relate to the themes, although not usually the extent of the divisions. Some (by no means all!) theories of personality are that all people function as a collective, with sub-personalities managing different life areas.

So, from these perspectives, nailing down the exact label becomes less important, it may not even change the focus of therapy or recovery. There are people who hear voices and have a psychotic diagnosis who find a multiplicity framework useful and consider their voices to be parts of themselves. They don’t switch or experience amnesia and their diagnosis remains the same, but a multiplicity framework is useful to them. I’ve also read of other people who are encouraged to view their experiences as multiplicity who feel pushed into that perspective without good cause, and determine that their situation is about abrupt mood changes rather than switching, for example.

The heart of this is that chronic denial can do terrible harm. Anxiety around accepting what is really going on for you can leave you refusing to listen to or look after yourself. It is helpful to find frameworks that fit and work, and hanging onto one that doesn’t – whether you’re a multiple hoping you’re not, or someone with something else going on who’s feeling forced into the multiple label, can be another way of denying what’s really happening with you and what you actually need. Many people, even those at the far end of the multiplicity spectrum, with taped evidence of other parts, just don’t want to know about it. It’s frightening to contemplate sharing your body, not always being in control, not being able to drug or get rid of symptoms quickly, and having to work on something as fundamental to you as your own identity.

Add to that mix fear, ignorance, and huge stigma about these issues even within the mental health community – for example, I know of many people with these concerns who have been denied treatment from mental health facilities and told they were faking their condition for attention- it’s no surprise that people want to put their head in the sand and hope it all goes away. A lot of the pain and stress about multiplicity is about how poorly it is understood and responded to by our wider community, which is an unfair extra burden on those of us trying to find the courage to deal with it. Another aspect of the pain and distress of multiplicity is that for many of us there are deeply destructive trauma histories we are struggling to deal with – and that is the case for many people whether it turns out multiplicity or something else is going on.

There’s often a misunderstanding that the choice is between “I have multiplicity” and “I’m fine”. Whatever is going on that you and your doctor are wondering about DID, it’s often happening in a context of a lot of pain and confusion. Things are going on that are causing you some troubles and for which you’re looking for support. On the other hand, I’ve also heard from people who turned up to a local counsellor for some help with a relationship issue or something else fairly common who found themselves with a question mark about multiplicity because the counsellor thought that feeling like you are younger around your parents means you are switching to child parts. Which caused a whole lot of needless confusion and stress. Everything boils down to this, really:

Whatever is going on, you deserve to have help and assistance to learn about it, work with it, and get on with your life.

So really, the whole question becomes a very simple case of asking what works. What helps you function better, what gives you greater freedom, what makes sense, what moves you forwards and helps you have a life? Hopefully, you’re not trying to work all this through by yourself, but have a good doctor of some kind on board, who isn’t afraid of or fascinated with the idea of multiplicity. Confirmation bias can feed into both over and under diagnosing conditions – this is where we look for information that supports our theory, and disregard anything that doesn’t. If you’re worried this is at play, perhaps you could try and keep two lists – one of anything that suggests you are a multiple, and one of anything that suggests you aren’t, or of alternative possible explanations for what you’re going through. See how it plays out over time and what you end up with. Or, forget about the labels and just go with the framework that’s getting you results. Good luck, whatever is going on for you, you still deserve love and support and you will still be okay!

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

Contribute to Mindshare

Mindshare is a new online Mental Health community, and they’re very keen to hear from other people who live with or care for someone with a mental illness. The site has a regular blog from guest bloggers – including myself! There’s also an area for creative content such as artwork, music, and poetry. They have a page listing mental health related Services, and an area called Consumer Resources which includes current news, events and articles. Well worth keeping an eye on as new content is being added frequently. The home page will always show the newest additions.

So, if you’ve a short story, some thoughts you’d like to write into a blog post, or art you could photograph, why not submit it? You can ask to have your work put up under a pen name if you’d prefer to remain anonymous. You can read the instructions for how to submit your work here, if anything’s not clear, give them a call and they’ll help you out. Very friendly people!

You can have a look at my entries on Mindshare here. 🙂

Understanding Roles

One of the topics discussed in Bridges last week was how we take on certain roles in our lives and how this affects us. We all play roles in life as part of our identity development. Teenagers especially may try out different roles over time or in different social settings as they try to balance needs to distinguish themselves as separate  and the desire to belong. We may also be given certain roles or defined in certain ways by our family or our peer group – ‘Paul is the quiet one’. Roles can be part of how we feel a sense of stability and belonging – ‘Mum always makes a cake for our birthday’. Developing our identity is also strongly linked to adopting role models – ‘Shane’s just like Grandpa’. We may struggle to show attributes we haven’t seen in someone else. People often start to adopt the mannerisms and characteristics of others we admire or spend a lot of time with.

Where roles can a problem is when they are limiting in some way, at odds with who we want to be, or have terrible costs we don’t want to pay anymore. We can find that other people’s idea of who we are can be rigid, not accounting for growth and change over time. Paul may long to be a more outgoing kind of guy, Mum may be desperate to swap roles at times, Shane may be rocked when Grandpa behaves badly. Sometimes teenagers identify with rebellious loners and find that the social cost to this kind of identity is depressing them.

Understanding roles can also be very helpful for multiples. There’s often a reason different parts of a system feel and act the way they do. Sometimes systems are very role-bound, Brenda manages work duties, Bren deals with emotions and relationships, Anne holds bad memories, Dilly stops Anne from sharing them. Understanding what role you and your parts play can be very helpful, not only in the outside world, but in relation to each other. Sometimes entrenched hostility, denial, abuse, or acting out can be better understood when you unpick what role the parts are playing and what drives this behaviour. It’s worth noting here that you yourself play a role with regards to your system too. Sometimes multiples, particularly those with a system that has developed as a central person (you), and a group of alters you didn’t used to be aware of, can forget that how you react and relate to the rest of your system is also having an affect. Your lack of awareness may have been the role you played – to suppress and hide the others so you can function day to day.

So, as a singleton or multiple, you’re aware that you’ve somehow become stuck with a role you don’t like. How do you change it? Good question! As usual, there’s more than one way to go about this. I find looking at the way teenagers manage issues around developing identity useful, because it’s not uncommon for them to experiment and try out different roles and approaches to life. They can be quite fluid while they’re finding where they feel most comfortable. It can be a bit trickier as we get older because we get so used to thinking of ourselves in a certain way, and people around us can re-enforce this, making it hard for us to change.

Something to consider is what function the role you’ve been playing has, and if you need to find a new way to perform that function, or if you want to leave it behind completely. Next, what kind of roles are you drawn to? Who do you want to be? Look around for role models, these don’t have to be people in your life, they might even be fictional characters. Look for ways to model what they do. The Magic of Make Believe by Lee Pascoe instructs how pretending to be a person we admire for a short time can help us to step outside our fixed idea of ourself and take on new characteristics. To a certain extent, we are who we think we are. Just because we’re not teens any more doesn’t mean we have to get stuck with roles we chose at 17 for the rest of our lives.

Another way of looking at roles is to borrow from Jungian archetypes. It may be that you don’t want to give up the role you’ve been playing, it’s valuable and useful and fits for some situations. Perhaps a more useful approach would be to expand the number of roles you can play. This idea simply put is that we all contain a whole bunch of different ways of relating to life – broadly speaking, roles. We get stuck when we’ve limited ourselves to only one or two. The idea in this case is to try and connect with some of the archetypes you’ve lost touch with. So for example, a very conservative straight laced person who’s feeling tired and lacking creativity might look for opportunities to play a Trickster role to liven things up. The theory is that all of us have within us the capability for all roles, the kind of flexibility that allows actors to find any character within themselves for a time. It’s a little like the difference between having only three cards to play, and access to a full deck. Being able to access and live out a peaceful, centred role when we’ve been stuck in chaos, or an assertive role when we’ve felt trapped by shyness, or an introspective role when we’ve been exhausted by driven productivity can free us to express many different sides of ourselves and be able to adapt and respond to many different situations in life. 

Some of the books that talk about Dissociative Identity Disorder also explicitly talk about how to change roles. A not uncommon issue is a part within a system who has played the role of abuser to other parts in the system. These can be strong, assertive, independent parts, who may have complex reasons for taking on this role. It may be an attempt to be protective (it will get worse if we tell, I’ll make sure no one does), it may be a form of self loathing and self abuse – in multiples parts may hate themselves, or may express self hatred by hating other members of their system, it may be behaviour that’s been learned and modelled from people in real life – in some cases the only modelling of a strong person who doesn’t get hurt has been an abusive person. More than one reason may be tangled in together, and the initial reason we take on roles can end up being quite different from why we keep hanging onto them. 

Roles are not static things, they are also about relationships. Roles such as parent/child are mutually re-enforcing. Even if you had no intention of playing the role of a parent with someone, if they keep behaving as a child, you may find yourself starting to behave as a parent. We ‘hook’ each other into roles. So roles that are played within systems are also about the relationships between parts. In the example of someone who’s got the role of an abuser, part of helping them put that role down is getting the rest of the system to no longer relate to them as an abuser – with fear and anger. Part of that process is about rebuilding the relationships – helping the abusive part to see the harm they’ve been doing, to develop empathy for the other parts, and to genuinely apologise for the role they’ve been playing. Helping the abused parts to articulate their pain and fear, to learn how that role came into being and why it was played, to start to connect with the strengths and good qualities of that part they haven’t been able to see before, and to let go of the old dynamic of abuser/abused and hook into new roles. 

If you’re struggling to take on new roles, it may help to link a new role to skills and strengths you already possess, instead of totally different ones. Abusive parts are often coached towards being protectors because their strength makes them great at both roles. There’s many different way of framing roles and the ones that feel positive and achievable may well be easier to take on. Good luck!

Exhaustion

One of the biggest draw backs to visual art for me is that it is a solo endeavour. I’ve always quietly envied musicians who jam together, making art can be rather lonely. I’ve tried being part of art groups, but it doesn’t fit me. Feedback in the middle of the process derails me. I actually went for about 8 years completely unable to make any art. Regaining it has taken a lot of time and patience and unpicking knots I’d become tied up in. So the process is rather fragile and necessarily done in a studio space by myself. In addition, one of the things I value most about my art practice is the absorption, where I tune everything else out for a time and become totally focused on my work. This is difficult for me in a space with lots of other people constantly interrupting. Crafts is a whole other ball game, doing cross stitch while nattering away is achievable and enjoyable. But making art for me must be a private process.

The business of being an artist, like any sole trader, has the spectacular downside of also being an individual journey. There’s no one there to look out for you except you. I’m constantly amazed at how many people think being an artist is really easy. Paint stuff and sell it – how hard can it be? Running any small business requires phenomenal dedication and a broad range of skills across many different areas. For an artist, they require not only creative artistic skills, but business nous, accounting skills, the ability to organise, to liaise with other people, maintain networks within the art industry, and learn many other skills that don’t often come easily to creative types. All against a background of constant devaluing (what’s the point of art anyway, it’s kind of useless) and the ever present risk of not being able to afford the rent.

I was at my last day of SmART training yesterday, and I’m exhausted. Not enough sleep, too much output, not enough places to talk, not enough downtime all combined to leave me on the verge of collapse. My whole body shook gently all morning and I spent the day trying not to cry. Dissociation kicks in and I have to work hard to focus and stop my vision blurring. Emotional exhaustion means the shields I keep strong emotion behind start to fail. Raw nerves are easily scraped. Intensity makes people distance in discomfort or move too close. I miss the team approach of shared work, even while I hate the politics, gossip, power dynamics, and personality clashes. I miss having a supervisor to turn to on days like today. My tolerance for any form of positive psychology is depleted to zero. My ability to believe things will all work out is zero.

This cynicism and emotional burnout is deeply uncomfortable to experience in a social setting. It’s actually an adaptive response. My life has burned down on more than one occasion. Losses, trauma, and chronic stress come out of nowhere like bush fires. Going into shock about it isn’t a survival trait. After the first time, you look for signs it might be happening again. Of course, that process can become self fulfilling. Hard balance to find. It hurts just as much each time, but seeing it coming you can at least brace yourself. So, days like this I find it’s best to be alone, in a space where no one will try to cheer you up, explain that life is what you make of it, or need you to hide the disturbing evidence of your chewed up heart. Trying to be ‘okay’ all the time only deepens the exhaustion. I give up on accomplishment or connection, pour a glass and have a black celebration.

Tomorrow is another day.

SmART Training

One of the fantastic opportunities I’ve been busy with lately (instead of getting reasonable amounts of sleep) is a couple of modules of SmART training, which is billed as ‘business skills for creative people’ and aimed at people with a disability. Last week we did 2 days on how to plan and program events, and this week we’re doing 1 day on people skills. May I say if you are creative and have a disability – get in to this training! It’s been offered by the Community Arts Network and Disability Arts Transition Team, ignore the dreadful website, the training was really useful and the take home manual comprehensive. It was also a great chance to meet some other creative folks with a variety of disabilities themselves, and to me, that’s as valuable as the training. 🙂 So, keep an eye out and if you see any more of this training, snap it up! I’ll post any info as I become aware of it at my What’s On page.

I hadn’t realised until this course just how much event running I’ve been involved in! I’m the primary event person in my family and social network, every year Christmas and Birthdays etc tend to fall to me. I’ve also been involved in some biggies like the school formal, theatre productions, engagement parties. In fact I gained a reputation for being able to work with people, produce the spectacle and stay in budget. My big weakness to date has been the paperwork side of things as most of what I’ve been involved in has been informal and running to a very tight budget. Things like grant applications haven’t been on my radar. But, I enjoy writing, and if I can master the transition in style from poetry to essay – the former came naturally to me, but the latter took serious effort – then I can learn the language of proposals and applications.

These are very exciting skills to be learning, not only for use in my creative projects, but also for the development of further resources in mental health. That’s a very exciting prospect and I’m keen to take things further and also try to make sure the resources I’m involved in now are sustainable over time. These are key projects I’m very passionate about and committed to, and it’s clear to me that at this point I need to be able to drive and manage them at least until I’ve found existing compatible projects to nest them into or some way to ensure they keep running. It’s an odd quirk of life, but currently art is my ‘day job’ and peer work my unpaid indulgent hobby!

What does Recovery mean?

Like any field, Mental Health has its own language and uses certain words in specific ways. If you’re new to the field, this can be confusing and frustrating. If you’re currently on the fringes of the Mental Health field, you will probably have heard the word recovery banded about a bit, with no one ever really explaining what it means. In the general culture, to have recovered from something means you’re completely better, cured. The recovery model uses the word in a different way, to mean that people with Mental Illnesses still have something to offer, still have rights, and can still live meaningful lives – whether they get completely better, live with and manage their condition, or remain very unwell. The recovery model was moving away from some of the issues with the medical model. Like anything, some people like it and some don’t. I like the model itself a lot, but the way it is implemented can leave something to be desired. Unfortunately, I don’t think we’re ever going to find models that are so perfectly designed we can’t screw them up.

What is a recovery focused service supposed to look like? There’s some great ideas and articles about this out there. I like the work of Marianne Farkas, who in this article sums up the recovery approach into four main values.

Person Orientation

This means not seeing people just as ‘sick’ or mentally ill, but recognising that outside of that role, they are whole people with many different characteristics. This is very important to me, whenever I have a new worker of some kind of in my life, the relationship begins very role-bound. As quickly as I can I move towards a relationship that has two unique people in it, rather than a ‘service provider’ and ‘service user’. By that I don’t mean that it becomes inappropriate or unprofessional. Rather, that I am seen as more than just ‘someone with a mental illness’ and we move away from that unpleasant dynamic of me needing help and having no answers, and them having all the answers and needing no help. I’m always more comfortable when there are two humans in the room!

Person Involvement

Person involvement means including me in all stages of services, how they are planned, created and delivered. The ‘patient’ role favoured by the medical model is a very passive one, I as the patient go in for treatment and hopefully come away cured. My job is to turn up on time and follow instructions. In mental health this passivity is painfully destructive. Firstly, selling the idea to people than someone else can fix your mental illness is cruel. Recovering from a mental illness is an active affair! No one can pluck it out of you. The more you engage, the more you learn about your situation, and develop awareness of what works for you, what makes you worse, what keeps you stable and well, the better the outcome often is. That doesn’t mean doing this alone! But a passive patient in mental health can give no useful information to the people who work with them. The service providers are ‘flying blind’ and reduced to guesswork about what the person needs and what approach might work. Collaboration, where you are in the drivers seat as much as possible, and their role is support you, encourage you, keep you safe, and help you access resources, that is about recovery.

Self Determination

This means having choices! The right to choose one service over another, to refuse services that you don’t like, and to be allowed opinions about your own care. The medical model doesn’t just invite a passive approach, it often requires it and punishes any other response. People are assessed on the basis of their ‘treatment compliance’, how submissive and agreeable they are. Being labelled as ‘non-compliant’ can cause you major problems with getting help, doctors may refuse to treat you or hospitals to admit you, you may have problems with Centrelink, and the public health system is not geared towards choice – staff rotate on their own rosters and you don’t have much power to request to stay with someone you got along with. In fact trying to access the same person can be interpreted as attempting to ‘manipulate’ the system and be another ‘non-compliant’ act, even though most of us understand that good rapport is important and changing service providers regularly is very stressful and tends to result in fragmented care. Choice is about understanding that people are different, there are ‘horses for courses’ and allowing people to settle with providers and approaches that work for them.

Hope

Sadly, this is an easy value to lose. Those who constantly work with the most unwell, disadvantaged people can lose sight of hope. Carers or staff begin to think of all people with mental illnesses as being profoundly disabled. Discouragement sets in, and people with illnesses start to be set up for failure, being told things like ‘schizophrenia is a degenerative disease, you’re only going to get worse’, ‘it’s very unlikely you’ll ever be able to work again’, ‘you’re a hopeless case’. Despair and frustration characterise the conversation between service providers and users, and the level of animosity can become very deep and very entrenched. Hope isn’t supposed to be naivete, but an awareness that things can change for all of us. The most profoundly unwell person still has growth potential! And those of us doing great have the potential for illness. Current roles of ‘well’ and ‘sick’ are not permanent, they may even be exchanged over time. This awareness helps us to interact in a more humble and respectful manner. People can remain stuck and overwhelmed for many years before something clicks inside. I know people who’ve spent many years in hospital and been told they would never recover who are now living independently. Things can change, roles can change, and service provision should always be about nurturing that potential for growth, not making the environment so hostile and depressed that it has little chance of taking root.

I’m pretty keen on all these ideas and I’d love to see more of all of them in our services. In my experience, we’re using the terms but not always understanding just how profound the power shift is supposed to be. There’s still a long way to go in improving the quality of mental health services and developing systems that are designed to be flexible, adaptive and responsive to individual needs. At the moment we often have systems that are limited and restricted, with some awesome people struggling to work within them. Getting your degree – or diagnosis, can be like being invited to a war. You’re given your uniform and told what side you’re on, and from that point forwards everything is ‘them’ and ‘us’, and no one is rewarded for seeing the other point of view. There is a better way, and I think recovery values are part of this.

About Bridges

Our weekly therapeutic group Bridges is going well.  I’m so pleased with how it’s developing. We’ve had no major incidents or problems, and the feedback about the group has been excellent. (‘We’ are a few people working together in the dissociative initiative, a group developing resources around dissociation.) It’s not the ideal space for everyone, but it’s clearly going some way to meet a need in the very under-resourced area of dissociation.It’s actually a pretty exciting project, there are very very few peer-run dissociative groups out there. We did a lot of talking, reading and research before we launched the group to make sure we came up with a good model. It was about a year in the making between discussing creating a group and actually having our first meeting. Part of that time was also spent developing resources such as basic information about DID and Dissociation, and giving talks about the topic to start raising awareness of the needs in this area. We also gathered feedback directly from people with these conditions to check that our assessment of what people wanted was on target.

We ended up drawing a lot from the model used by the Voice Hearing groups, particularly in regards to the open nature of the group – it is held weekly but there is no pressure on people to attend. While a group like this can be a huge support and resource, it can also be unsettling and disruptive, leaving people feeling ‘stirred up’. We wanted people to feel a sense of belonging even if they only chose to come occasionally, and to have the opportunity to self-regulate, that is, to decide for themselves when and how often attending the group was going to be helpful. The feedback we’ve had from people has suggested that this approach is working well, and just knowing that the group is there and available even if someone isn’t attending every week does help to create a sense of being welcome and accepted somewhere.

Some of the group models we encountered exerted a high degree of control over participants, for example, requiring signed documents from treating psychiatrists that the person had a dissociative disorder, was in active current therapy, and had the doctors permission to attend the group. Some of the models were also very regimented, with a strict schedule of discussion topics, and required attendance at each meeting.

We felt these approaches were inappropriate and wanted to create a safe space that was flexible and adaptive to the particular needs of the group members on any given day. We also wanted to emphasise the ‘peer’ aspect of the group, the Voice Hearers groups are ideally faciliated by people who themselves hear voices. This can really help to create an inclusive space where people share from a more equal place. We decided to work according to the following values:

  • Safety everyone has the right to experience a sense of safety and support within the group. We ask people to be mindful of not distressing each other by discussing sensitive things such as graphic abuse memories. Everyone is encouraged is speak up if something they are not comfortable with is being discussed. The personal sharing within the group must remain confidential. Some people attending have not disclosed to other people in their life about their experiences, it is especially important to not accidentally ‘out’ anyone. The group facilitators are available if anyone needs to debrief or wishes to discuss something further outside of the group.
  • Respect each person, their ideas and perspectives. We don’t need to agree with each other and we try to avoid advising each other as the recovery process is very individual and what works for one person may not be the best approach for another. We do share our thoughts, ideas and experiences so that we can learn from each other, but we don’t try to make other people agree with us. We all have the right to understand our experiences in our own way.
  • Recovery the focus of the group is to share, listen, feel heard, and develop strategies to better manage dissociative experiences. It is okay to be struggling or frustrated, but the goal of the group will always be to grow and develop our own recovery journeys.
  • Acceptance the group will aim to make room for all people who benefit from attending and each person is welcome to be however they need to be at the group, as long as safety and respect is maintained. Group members are at different places on the dissociative spectrum, and have different experiences around dissociation or multiplicity. We will not diagnose one another or in any way encourage a worsening of symptoms. Some people may switch during group, and there is no problem with this. While we especially seek to make people with multiplicity at home, no condition or experience is more important than any other.

The format of Bridges is that anyone who experiences dissociation and/or multiplicity is welcome to come along. They can contact us first if they wish, or they can just turn up on a Friday and see how it feels. (Do check MIFSA is open, it will close for a little while over Christmas for example) People don’t need an official diagnosis or even to be certain that dissociation/multiplicity is what they are experiencing. It can be very confusing, and it’s okay to come along while you work out what is going on. People are welcome to bring a support person along with them if they wish, such as a friend, carer or worker. We don’t allow support people to come by themselves unless they also experience dissociation/multiplicity as group members can feel a bit exposed otherwise. We do recommend that people consider bringing a support person or making safe arrangements to get home from group if they anticipate being too stirred up to safely drive or navigate public transport after the group!

I do prepare a range of relevant discussion topics in advance, but we aim to uncover them naturally as people share ideas or concerns within the group. Every week I post here some aspect of our conversation that may be useful, partly for the benefit of people who can’t attend, and partly because many people who experience severe dissociation have difficulty retaining information and having a written history of group topics to refer to can be a useful resource.

I’m continuing to grow our little library so that people who find bibliotherapy helpful (like me!) can freely access relevant books. We would love any donations if you can help! One of my next major goals is to work on developing a way to include rural or house bound people. Another is to see if we can source some funding to pay us a little for our work. There’s also a tremendous need for specific carer support in this area. I went out this week and bought some new supplies for Bridges. I now have a receipts book and coin purse to handle the deposits for my library books, the Bridges notebook for details such as possible discussion topics, and the pencil case, pencils and crayons are for people to draw or colour during group if they wish. The table is always set with books to browse, water and snacks, and colouring in paper. Doing something with your hands can be a useful distraction to calm down when feeling anxious. Colouring supplies also help make Bridges a safe space for younger alters. 

I’m very proud of this group, for everyone who comes along it is such a huge achievement considering the atmosphere of controversy and hostility that sadly dominates conversations about dissociation. I’m hoping this group is a small step in the direction of changing things and improving the support offered to people who experience dissociation.

Follow up to the Inquiry

During the Inquiry into Mental Health and Workforce Participation, myself and a few colleagues talked at Parliament House and we were asked some great questions. I love being asked great questions, it shows that the other person was really listening and engaged with you. And then I get all excited and my brain buzzes as I try to engage back and come up with good, useful responses framed in a way that will make sense. Between the nerves and the excitement, it’s a bit like skydiving! We ended up sending in a letter with a more detailed reply afterwards to make sure we’d really answered everything. I thought I’d share the gist of some of this with you.

Q: What would have helped you to access education or employment when you initially became unwell?
A. For myself, I really needed targeted support on campus at university that was geared to assist people with mental illness and multiple disabilities. One of the difficulties with the disability sector is that it often operates on a limited framework, assuming only one condition per person. For people like me with difficulties in more than area, support can be limited and fragmented. The kind of support I have needed on campus is a safe place to retreat to – be that a quiet room, a group meeting area, a small cafe or space in the library. For me it needs to be small, quiet, out of the way, open all hours and easy to get to. Libraries have traditionally been my safe haven, but uni libraries are very large and confusing and I tend to get lost in them!

I also needed someone I could talk to who was willing to provide emotional support while I oriented myself and became more comfortable on campus. I struggle in new environments and with lots of strangers around. The counselling I accessed during my time at uni was unsuitable. The counsellor was extremely anxious about my mental illness, geared for short term goal-oriented counselling, and outraged that I was just seeking emotional support from them. A better understanding of the nature of mental illness would have been very helpful.

Similarly, making more disability friendly the other pathways back to work and study would have been very helpful, such as volunteering and short courses. Helping people like me to feel useful, connected and to find a road back to our study and work goals is crucial.

Another thing that’s often overlooked is that good mental health is built upon a foundation of stability and security. Mental illness can arise from major life challenges, and can create major life challenges. Many people with severe mental illnesses also face complex issues such as homelessness, family breakdown and domestic violence, isolation, drug and alcohol issues, and physical disability. All these contribute to instability and make maintaining work or study extremely difficult. It may not seem intuitive to support employment for people with a mental illness by providing services such as appropriate housing, but this kind of foundational, practical support is key to creating the kind of life where day to day survival is less consuming, so there is time for the pursuit of education and work goals.

Making it easier to link into services would have been incredibly helpful. As a young person I was given no information about my mental illness, local services available to me, and I had no idea there were things I could do to improve my mental health. My doctor or the university could have provided this kind of information, or a referral helpline could allow people to find out about services in their area. Making support services more friendly and accessible would also help. I was initially extremely afraid of the mental health system and deeply intimidated by the labels. It took a mixture of courage, exhausted indifference, and desperation for me to be willing to walk into buildings with words like “Mental Illness” on them. Many of the services available are also very restricted in the kind of support they provide and who they accept as clients. Many services provide support based on the label of your condition, for those of us with poorly funded conditions or rare ones, we can really struggle to find anyone to look out for us. Even if you can access a service, growing older, moving house into a new postcode, getting a new diagnosis, or becoming homeless can all see you become ineligible and exited from the system. Flexible and tenacious support is key. Had I been linked to a PHaMs worker back then, things may have been very different.

Reducing fear and stigma in the community will also make it easier for people with mental illnesses to seek early help and stay engaged. School aged education about mental illness, self care, early warning signs, and hope for recovery could help students struggling with emerging mental illnesses to recognise their condition, know where to go for help, and feel more comfortable about doing so. The opportunity to connect with Peer Workers who have come through mental illness can help enormously to encourage people that a mental illness is not the end of the world.

Q. What can the Government do to encourage employers to employ people with a mental illness?
A. Far more powerful than telling the business world how they should be including people with mental illnesses in their workforce is to model how it can be done. This would normalise the practice and show commitment to meaningful inclusion. There are already people within Government departments who are managing a mental illness, and they could be approached as a resource to develop policies around the employment of people with a mental illness. If the Government leads the way by supporting people with a mental illness within their own workforce, other organisations and employers are more likely to follow this example.

FaHCSIA has models such as PhaMs that require Peer Workers, so having experienced a mental illness is a prerequisite of the position. The Government could ensure that current and future models be designed to have the same requirements, for example respite services, community based mental health programs, Centrelink, or Medicare. Include Peer Work positions in service agreements, then follow up, review and support organisations to implement them.

Education, training, and ongoing support for employers about managing a workforce containing people with a mental illness will help to reduce some of the fears that employers have. An example of this is the Remind Education Program. Ideally, this kind of training should be provided by people with a mental illness themselves – this will reduce stigma and create jobs directly for those individuals. A helpline for employers may be an appropriate format for providing ongoing support.

Peer Workers play a crucial role in raising awareness and reducing stigma. Peer Work positions value the ‘on the job training’ of people who have learned to manage a mental illness, so that it in some way stacks up when compared with people who have theoretical training. The Peer Work Program can be supported as a pilot model for the employment of people with a mental illness. This model can then be expanded to be used for the employment of people with a mental illness in any role.

Lastly, creating safety nets so that people with a mental illness can manage episodes of illness without losing their jobs or having crucial tasks left undone will promote employer confidence and employee security. For example, having a disability employment support who make a staff member available to fill the individuals role should they become unwell. Less pressure on staff with a mental illness can lead to greater productivity.

Q. What are the risks to Peer Workers? For example, are they similar to those faced by Peer Workers in the Drug and Alcohol sector?

A. I found this a really interesting question. The risks to the health of Peer Workers in the field of Mental Health are very different to those faced by recovered addicts/alcoholics who work in the Drug and Alcohol sector. The development of a mental illness is quite different from the addiction model. There is nothing ‘tempting’ about spending time with people with a mental illness. I’m also not aware of any evidence that spending time as a peer with people with a mental illness will in any way make someone more vulnerable to mental illness or a decline in their mental well-being. That certainly hasn’t been my experience, on the contrary, being part of my groups has been of tremendous benefit to me!

Having said that, Peer Workers do have risks to manage. Some of these are simply the kind that anyone in the workforce has, such as coping with life stressors or balancing work and family responsibilities. There are also some issues that are particularly relevant to anyone working in the mental health sector, such as the possibility of burn out, and the importance of minimising vicarious traumatisation. Lastly there are some issues specific to the role of Peer Worker. Peer Workers have a ‘foot in both worlds’ as it were, partly staff and partly consumers within the mental health system. Membership to more than group in this way can be stressful, particularly at times when those groups are in conflict and each is demanding the exclusive loyalty of the Peer Worker. As the role is relatively new, sometimes Peer Workers work under unclear job descriptions, experience workplaces that don’t model good mental health practices, or struggle with a lack of support from management. Sometimes Peer Workers can be under extra pressure to prove they are managing their mental illness. Boundary issues can be difficult to negotiate, and some Peer Workers have lacked access to relevant training and support.

My experience has been that Peer Workers often report that their work is part of their recovery journey rather than a risk to it. In work environments that are supportive and well matched to their skill set, Peer Workers can flourish. The opportunity for employment and the chance to give something back is a meaningful part of the recovery process. Peer Workers can also appreciate the transformation of experiences that have previously been a liability into an asset.