Gender, diversity, and health

Recently in my public health studies, I was asked to explore some ways in which gender has an impact on health. Here’s some of my thoughts:

Experiences, health conditions, or personal identity that deviate from cultural gender norms can expose people to considerable health risks. Stigma, rejection and/or victimisation from family, peers, and community, and lack of access to resources such as education, work, and medical care, each compound in a vicious cycle for many people. As a result, they then face all the health risks of people exposed to unemployment, loneliness, poverty, mental illness, and so on.

There’s a range of ways people can violate gender norms. The norms themselves vary from culture to culture and at different historical times. Cultures are more flexible about some variations and more rigid about others. Some cultures have more overlap between qualities seen as ‘male’ and those seen as ‘female’, and the value placed on each varies. Many cultures have third gender, transgender, both gender and other options. When gender is a rigid organising principle it often determines opportunities, risks, and the power permitted in various life spheres.

In many cultures ‘female’ identified skills, roles, and behaviours are associated with less power in their personal and political lives, less access to the market economy, and are seen as less essential. Some cultures (such as ours) permit women to identify or behave in ways seen as ‘male’ more readily than the reverse because of this disparity. So it is now largely acceptable for girls to wear trousers, while boys wearing dresses/skirts/kilts is a source of controversy.

Women are more likely to operate in a gift/barter economy alongside the men in their lives, performing more unpaid work such as child raising, care giving for sick and elderly, housekeeping. When women are employed they are more often part time and unemployed, and more often working in the lower paid ‘welfare workforce’ using ‘traditionally female skills’ such as child care and support work. They are more vulnerable to poverty, domestic abuse, depression, homelessness, and lack of control over their bodies and choices.

In such an arrangement, men are less socially connected, have more options for education and wealth without having to choose between paid work and having children, and are less likely to participate in unpaid work. They are more vulnerable to loneliness (particularly once retired), less likely to seek support, slower to access health care particularly in matters that contradict ‘male’ stereotypes such as for concerns about virility or mental health, more likely to be assaulted by other men, and much more likely to kill themselves.

The health risks and vulnerabilities are considerably higher for those who do not or cannot fit this binary. Binary transgender people (those who were identified as male at birth but experience themselves as female, and vice versa) for example are at much higher risks of suicide, violence from strangers and family, rejection, homelessness, mental illness, and unemployment. Non-binary people (who identify as agender, gender fluid, both genders, multiple, and so on) are likewise disadvantaged. People who are attracted to their own gender are often also the recipients of social rejection and stigma as attraction to the ‘opposite’ gender is often a key aspect of the gender norms: ‘manly men’ are ‘supposed’ to be attracted to women, not men, for example. Same sex attraction violate gender segregation norms that presume same sex spaces are free from attraction. People who identify as the gender they were assigned at birth but who diverge from it in choices such as career, interests, or appearance also face risks.

Intersex people and those with hormone variations and disorders can experience severe medical trauma within health services that seek to ‘normalise’ them and fit them back into a gender binary they may not identify with.

Many of the groups already experiencing some other form of disadvantage are more represented in gender diverse communities, such as autistic people. Experiencing more than one form of diversity such as being disabled and queer, or indigenous and queer puts people at much higher risk due each community not understanding the other. For example for many years ‘bisexual privilege’ was spoken of with the assumption that being able to blend in and ‘look straight’ gave bisexual people an advantage over monosexual queer people (lesbians and gay men) who were constantly dealing with the stress and risks of being outed. More research suggests the opposite, that the stress of being invisible and feeling unwelcome at times within both straight and queer communities seems to be the cause of the much higher rates of physical and mental illnesses suffered by bisexuals than straight or queer monosexuals. Bisexuals who are in same sex relationships and are validated as queer face fewer health risks than those in binary relationships who are usually assumed to be straight.

This suggests that not only does each gender experience health risks differently, but some forms of divergence from gender norms are associated with greater risks than others. Some resources are safer and more accessible for some forms of ‘validated diversity’ and may be hostile or harmful to others who are divergent in other ways. There is for example, conflict at times between binary and non binary trans people about the legitimacy of their identity and how they are perceived by the wider community.

A final group who face severe health risks due to gender are often forgotten about. In the book ‘Dead Boys Don’t Dance’, a study found that suicide rates were higher for queer boys than straight boys. But the highest rates of all were in a largely unstudied subgroup – boys who had been perceived as and labelled by their peers as gay, but who did not themselves identify that way. These straight boys experienced all the risks and rejection from the straight community suffered by queer boys, and also lacked the protection of a sense of engagement and belonging with the queer community. Their invisibility, misidentification, and lack of peers was frequently a lethal combination.

So when we talk about gender and health, the costs of a rigid gender binary, norms, roles, we are talking about costs for all these people. Different levels of risk and types of vulnerability, but no one escapes a troubling cost to losing access to some aspects of what it is to be human and what we need in order to thrive. There’s no winners in this list,but some of the people paying the highest prices are also the most invisible and overlooked in conversions about gender and health. We can do better.

Speaking of Suicide

Awake in the small hours this morning, enjoying the beautiful room here at the Langham hotel. It’s been a huge month for my family and we are feeling stronger and closer than ever. Soaking up all the experiences and processing so many conversations with new people.

I have been learning how to move through many different worlds with more grace. Messages of compassion, authenticity, diversity are reaching fertile ground. Doors are opening into new opportunities. The costs of this work are gradually becoming less, the transitions easier for me. I was raw and vulnerable the night before speaking, but not sobbing or sleepless with fear. Bearable costs becomes sustainable practice.

Yesterday at my work, we spoke of suicide and the aching gulf in those of us left behind. There was a moment of profound anguish, bewilderment, guilt, loss. In every space, every talk there’s a question brought burning in someone’s mouth, and if it’s safe to ask it will be asked. Sometimes it’s like a scream into the night, a supplication to a god, or the revealing of a hidden wound. Yesterday it was the aftermath of losing friends to suicide, and when the words were spoken, I felt like the floor fell out of the room into darkness and we were all strung like stars in the void, glittering with tears.

How do we make peace with such aching loss? How to bear the fear of future grief? How can we possibly understand such pain without also sharing it? How to live well with the ghosts of those we’ve loved who died before their time, leaving so many questions and taking all of the answers with them? What does it mean when people hide their pain from us?

There are moments when all that is different between us is suspended. Yesterday grief united us, here in this confused anguish is our shared humanity. Suffering and death a profound leveler. We are mortal and those we love, die. Sometimes alone and in terrible pain.

So we speak of compassion, dignity, connection, humanity, even in our places of work, those last bastions of self presented as invulnerable success. Not only for the benefit of those who struggle, but also those on the periphery, spared such agony but who do not wish to be left behind in doubt and sorrow. No one falls entirely alone, the cut threads unknit lives far beyond one loss.

We speak and unravel shame, ease the weight of secret burdens. The panel is gentle, compassionate, Georgie Harman lays a light hand on lingering guilt, Dr Eddie Mullen encourages learning and exploring – knowledge is power. They were splendid. I speak as someone who has been chronically suicidal and talk of the great gulf of fitting words to feelings, and of wanting to protect people around me. How deceits start small and with good intentions and grow large and overwhelming. I speak as someone who has cared for others who are suicidal, across a range of settings, and talk of the terrible fear of burdening loved ones, the twisted logic that draws darkened hearts into empty sacrifices that ease no pain.

The moment concludes, we who have been the midwives of it talk, listen, debrief, break bread together, shake hands, conclude. We part ways, step out into the rain.

I hope we honoured your dead, and gave some balm to the living. I hope you felt heard, held in dignity. I hope we served our goals well, safe shepherds for first conversations. The task of being human and remaining humane with each other is not always an easy one, and not without risk or pain. But it what we are for and where we shine brightest.

Bearing Witness to Pain and Suicide

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

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

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

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

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

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

Running away

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Rose has arranged a few days away for us both as a birthday gift. We’re running away from home, but we’re packing all our vulnerabilities, the broken bits of heart into our suitcase. Bringing all the demons along, the way it feels like I can’t quite catch my breath all the time. Bringing the nightmares, the portal into darkness and loss, waking with the memory of rope tight on my wrists, the burning lights of his touch in my skin. Bringing the dreams where I try to make things work out, dreaming the same dream a hundred times and no matter what I try it all ends in loss. Bringing the pain in the lines around my mouth and the futility in my hands at rest. I’m running away from the days that flip from good to dangerously bad without warning, from nights where I only go to sleep after checking with my love if she’ll be safe in the darkness. I’m running from the split in my world: it’s a beautiful day/I’m dying inside: because they’re both deeply true and tearing my heart apart. I’m running away from feeling so good, so loved, so blessed that I’m holding myself back from lying my head in friends laps and crying with joy. I’m running away from biting down on the scream in my chest because there’s nowhere in my world that could bear that kind of pain without catching fire. Running from the house full of tender soft baby things. I’m taking the self hate with me, sewn into every inch of my skin. Running somewhere with wide open skies and deep black nights, somewhere my heart can swell to its true size, feel all the love and all the pain without waking the street.

Grieving after suicide

I received this heartbreaking anonymous comment on a blog post I wrote a while ago called “Caring for someone who’s suicidal

I cared for someone who was chronically suicidal and failed to protect them adequately. During a very short time of being left alone, while acting like he was feeling well, he did end up hanging himself and died. How do I reconcile my feelings of failing him? How do I ever find peace in his passing when I feel responsible for letting him be alone for any amount of time?

I sat with it for a few days trying to think of what to say. It’s really hard when you don’t know the person or the context, what they’re being told or finding particularly hard or helpful. I came up with this, and thought I would share it here for all the rest of us who are struggling with guilt and loss:

I’m so sorry to hear that. How do we find peace in something so tragic? I don’t know if anyone has told you that sometimes people work hard to protect us from their pain, they hide it and we are deceived. We question everything after they’ve gone, trying to work out if there were warning signs we missed and what we might have done. I don’t know if anyone has told you it’s not your fault, or if you are so sick of hearing that because it doesn’t make you feel any better. How do we live with the guilt and sense of failure of losing someone we loved? Is there any peace to be found?

Sometimes when we feel guilty we don’t even feel like we have the right to grieve. We are numb, or we hate ourselves, or we carry a weight around inside that is nearly impossible to breathe around.

It’s okay to grieve hard. It’s also okay to put them down from time to time, to lay them to rest and give yourself time to breathe and feel and laugh again. It’s okay to sit down with that sense of failure and look it hard in the face, very hard, and accept that this is part of what it is to love people, part of what it is to be human. There’s no peace to be found in this kind of violent loss, and yet there is a kind of peace in coming to terms with that, learning how to hold the pain and the conflict so it doesn’t kill us.

He didn’t die unloved. That’s a precious thing. I wish it was more powerful, so powerful that it saved all of us. But it’s still deeply meaningful. That’s a failure that’s not yours. You did care, and you did protect them, probably many times, through many dark nights. Sometimes we are not powerful enough to make the world be as it should be. To bring justice, truth, hope, light. We are small and mortal and life is large and some of it is brutal. It’s hard to forgive ourselves for not being able to do what our hearts so desire, to heal all the sick children and feed all the hungry people and give hope to those who can’t find their own. We are mortal, human, we face the darkness with love, and sometimes it is not enough.

So what now? You carry a darkness of your own now, a place where hope dims and pain waits like an ocean. You meet it with love and honesty. Reach out to people – some will not be able to talk with you or bear that pain, but some will. They will remind you you are not alone, that many of us have found our limits and grieve what we cannot change. Keep his memory alive but find ways and times to put down the searing pain and weight of his life. You carried him for a time, you will carry his name in your heart forever. But hearts are not made to be graves, there must be joy and new love, there must be spring again after the black winter when you are ready.

Much love xxx

What to do with a suicidal part

I am so damn tired. It’s been a rough week with a lot of stress in my head and the lives of a few of my close friends. On the upside, I have a lot more material for the part of my book that’s about managing overwhelming emotional pain… sigh. Silver linings!

One of my big stresses recently was a part becoming suicidal. This can be a huge issue for multiples! I get a lot of emails and contact from people who are struggling with one or more parts who are in absolute meltdown. Whole systems can fall apart under the stress, and processes which were fair or reasonable can become abusive and totalitarian.

Most people who have felt acutely suicidal have experienced that disjointed place of desperately wanting to die and being terrified of your own feelings and actions at the same time. It’s a profound conflict, an inner struggle that consumes all resources and leaves people utterly drained and deeply afraid of themselves. For multiples the struggle and the conflict can be more polarised and even more intense. Parts who don’t feel suicidal are often terrified of being killed – as far as they are concerned, not by suicide but murdered. Fear does not make us kind. We recoil, disconnect, and attack when we feel like our lives are being threatened. Systems can rapidly devolve into massive power struggles, and outright war with other parts trying to permanently suppress or annihilate suicidal parts. Child parts especially may become so terrorised that they dehumanise a suicidal part and see them as a witch, demon, monster, or other evil creature. Being trapped in a body/mind with a suicidal part can be very traumatic. Experiences of fear, horror, and helplessness may contribute to the development of severe trauma responses in other parts, including PTSD. As a suicidal part becomes increasingly attacked, dehumanised, and alienated from the rest of their system their despair usually intensifies, their behaviour becomes more dangerous, and the restraining factors of empathy, connection, and a sense of responsibility to the rest of their system are eroded. Sometimes this ends in catastrophe. The loss of anyone to suicide is utterly devastating. Having spoken with frightened, non suicidal children and other parts in the hours or days prior is almost unfathomable.

Versions of this dynamic tend to repeat themselves with parts who self-harm, have addictions, re-contact abusers, suffer eating disorders, or have other frightening and self destructive behaviours, with varying levels of intensity. There is no one magic fix for this situation, and different multiples manage it in many different ways. I can share some thoughts and ideas that I’ve found useful and you can possibly use them as a spring board to trial your own approaches.

My first observation is simple but important. When we are frightened, we will try to control. When we are frightened of someone, or some part, we will probably want to reject, dehumanise, and alienate them. It’s okay to have these impulses, they are human! It’s okay to feel everything this horribly stressful situation makes you feel – scared, frustrated, confused, angry, overwhelmed, defeated, hurt, exhausted, burdened… It’s a really hard place to be in. Some of your feelings are going to want to make you act in ways that will feel right but make the situation worse. You have every right to feel everything you’re feeling, but you need to be careful before acting on impulse.

Exactly the same goes for the suicidal part/s. You probably can’t make them stop feeling the way they do and rejecting their feelings and pain will probably intensify them. They have every right to be feeling the way they are, it’s their impulse to act on them that is the issue. I have one part who has a strong desire to self harm, and at least two who are very vulnerable to feeling suicidal. So how come I’m still here (touch wood)? My observation has been that parts who are at greatest risk of killing themselves are parts who:

  • misunderstand the nature of multiplicity and think they can kill the body without the rest of the system dying. This is pretty common and important to check with any suicidal part!
  • are disconnected from or rejected by their own systems and don’t feel empathy towards the other parts
  • are being abused by their own systems
  • are being abused by other people in their lives
  • are angry and resentful towards their own systems and deliberately seeking to frighten or punish
  • do not feel loved
  • do not feel hope, and feel responsible for finding a sense of hope for the whole system
  • have horrific roles within the system – for example, the part who remembers all the bad things, the part who feels all the shame, the part who acts out all the stress for the system, and so on
  • do not get their needs met
  • do not feel safe
  • feel overwhelmed by guilt or shame, believe they are evil, believe their death will protect someone or make the world a better or safer place

Obviously there are other risk factors too. Some of the protective factors I’ve found support suicidal parts are:

  • having a safe place or person to express their intense feelings without censoring or judgement by their systems – other parts often feel shame about these feelings and may refuse to allow a suicidal part to speak to a therapist, write honestly in a journal, and so on.
  • feel a sense of connection and love from their systems. They work together as a team to manage the feelings and impulses. Their system expresses empathy for their situation, and they can feel empathy for the situation their feeling puts other parts in
  • understand that suicide will kill everyone in their system
  • are able to allow other parts or people to find or create hope in their lives, accept support from others
  • are able to negotiate some role changes when needed
  • are given respite from demands of life. eg. when out, these parts are allowed to stay in bed, email the therapist, not leave the house etc, or they are willingly switched back inside if functioning is needed that day
  • are willing to compromise on ‘needs’ – so eg if the intense experience is a ‘need’ to cut, they work with their system to find alternatives that sate that need somewhat, such as Ink not Blood.
  • are treated with respect and gratitude for their role
  • are treated as though they are important, valuable, significant members of the system

As you can hear, a lot of this is about relationship. This kind of connection takes more than an afternoon to build, and for a system under such extreme stress it’s a hell of an ask. On the other hand, it could save your life. In my experience there’s usually one member at least who is able to connect and empathise better with a suicidal part, and it can become their role in the early stages to intervene on behalf of a suicidal part and the rest of the system (assuming a system of more than two parts). Part of the basis for this can be realising that there is a lot more common ground to your situation than it seems at first. Suicidal and non-suicidal parts are both often feeling trapped, stressed, scared, overwhelmed, and unhappy. If you keep seeing the problem as being the suicidal part, all your reactions and solutions will be about controlling or eliminating them. If you can see the problem as the experience of being suicidal, you can approach the part with more empathy and team up with them to help manage that experience. Here are a few approaches that people sometimes find helpful:

  • directly influencing a part’s feelings, memories, or autonomy. Some systems or parts can do this, some can’t. Sometimes you can directly engage to dial down intense emotions, shift who is ‘keeping’ bad memories – perhaps spread the load a little more evenly, or keep a part inside in lockdown while they are a danger.
  • engaging suicide on a symbolic level such as allowing a part to ‘exit’ from life, refuse to come out, disengage from relationships, change their name and so on
  • killing or supporting the part to die without affecting the body. Some systems can do this, some cannot. There are complex ethical concerns here that suggest this as an option of last resort.
  • containing the part except for safe locations – eg. hospital, in therapy, in a ‘safe’ place where they can express feelings (safe is dependant on their likely methods of suicide – it may be an empty beach if drowning does not appeal, or a craft room if scissors are not a concern, etc)
  • increasing the part’s dissociation so they are buffered from their intense feelings and less likely to act on them. eg. sometimes if a suicidal part is close to the surface whoever is out in my system will trigger dissociation by surfing the net, watching tv, sitting in the bath, anything that makes us ‘zone out’ until we feel safer
  • comforting the part internally by doing things such as hugging them, talking to them gently, singing to them, making a safe nurturing space for them internally (not all multiples have internal worlds, and not all multiples can communicate internally)
  • take on the parts’ unmet needs as problems the whole system needs to engage and manage. eg. if they need better social support the whole system works on building stronger supportive friendships or finding a good support group online, or if they need a musical outlet the system works together to save money for an instrument and lessons. Take the burden of solving problems, finding hope, and meeting needs away from the part who isn’t coping.
  • explain the part in non-frightening ways to scared system members such as children. Humanise them and help to develop empathy towards them. Sometimes kids will have the most profound and effective connections with deeply wounded parts.
  • make the most of the multiple experience of never really being alone. Support and be with each other.
  • stagger behaviour in order from least to most harm done. If an extremely bad night is going to be survived only with self harm then better that then death. I write more about this kind of approach in ‘Feeling Chronically Suicidal‘.
  • merge or fuse a suicidal part with a hopeful or naively optomistic part to create a more balanced single part from them both
  • try taking a caring, invested, parental approach to a suicidal part. Coax, coach, nurture, and set limits with them
  • understanding and affirming that no systems are invulnerable without also being psychopathic. Part of what it means to be human is our capacity to feel shame, suffering, and hopelessness. We also have the capacity to heal. Most people who survive a suicide attempt later feel far better and are relieved they did not die. I’ve no reason to think that parts are fundamentally different. Keep these things in mind if killing or otherwise removing a suicidal part is your intention, there may be unintended consequences assuming you are successful.

In some ways, what helps suicidal parts is pretty much what helps anyone. Other approaches are more specific to being multiple. Some of these ideas may seem increibly far away or even impossible for you, especially if your system is at war. Please be assured that even small steps make huge differences. Little gestures of compassion or connection can start turning everything around. Only you and your system can find what works best for you, and only you can decide your own take on the values and ethics with which you will engage these very challenging situations. Please be assured that you are certainly not alone in these struggles, and that it possible to live with suicidal part/s. Wishing you all the very best.

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

The fear of dying

Today was a triumphant day. Rose and I saw our first dreadlocks client in our new studio, and spent 5 & 1/2 hours getting them looking great again and putting in about 50 extensions. We’re both trashed but on a wonderful high.

Last night I dreamed that my friend Leanne, who died recently, was still alive. In my dream our long drive interstate for her funeral was actually to see her, in response to a plea for help. When we arrived she told us that she was terminally ill and wanted assistance to kill herself. In the dream I was outwardly calm as we took her to the doctor for assessment (euthanasia was legal in my dream) while inside I was screaming with a kind of terrified despair – please please don’t make me do this to you! A desperate clash between wanting to honour her needs and wanting to care for my own.

I woke distressed and confused, it took a little time to untangle dream from reality, it had been extremely vivid. It’s easy in some ways to turn my face from the grief and the reality of her death, to let it slip past my mind. That’s why I have a photo of her coffin in my phone, a piece of stone from the graveyard where she was laid to rest. Not to wound and torture myself, but to inoculate me against dissociation of the kind that takes away life. So I get out of bed and I do the things that make up my day, and I always try to do them wholeheartedly. Then in quiet moments I remember my bright, lovely friend, and I realise her passing, that though she remains in my heart her voice is now silent and we cannot have any new conversations except in the constructs of my mind.

It makes me miss her and it makes me fear dying young. I have so much love ahead of me, so many dreams and hopes and so much love. Years of torment and loneliness have passed, made way for hard won insight, for love and friendship, for some kind of peace, for joy and hope. It makes me feel the farthest from suicidal I think I’ve ever been, to clutch to life with desperate desire to live longer and dream deeper. When the guilt and the self loathing crank into life like a carousel spinning in my mind I think to myself – I don’t have time for this. I don’t have time to waste on self hate, there is so much life to be loved, friends to love, so many dreams I’m hoping for. And it doesn’t feel dismissive, it feels like permission to stop torturing myself because I never get that time back. I feel a deep laugh, a joyful casting off of a heavy weight. I put it down and throw myself back into my strange, beautiful, tiring, complicated life, with joyful abandon. I am deeply blessed.

Ink Painting – From the stars

I sat up late last night in my studio, painting with inks again.

I’m sad and tired and can’t seem to shake it. World weary and weighed down. I thought painting might help. All my images were of grief. It did and it didn’t. It didn’t and it did. I re-read Greylands by Isobel Carmody. I’ve looked for furniture for my studio at local second hand stores. I’ve discovered that the name we were going to use for it is already being used. I’ve looked up new names, none of which quite fit.

My basil plant is huge and fragrant and full of bees. My sage is dying, despite all love. Life is strange and sad and my heart is full of broken glass.

I’ve painted this dead woman and her howling dog, she’s hanging from the moon and stars, tangled in the dreams she was weaving.

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Power shifts in a multiple system

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

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

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

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

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

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

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

TW for religious content

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

End TW

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

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

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

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

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

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

Fear of the dark

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

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

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

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

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

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

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

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

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

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

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

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

Well, it had to happen sometime. I’ve been writing this blog for over two years, and out about having DID and being bisexual, both of which potentially expose me to abuse, violence, or ridicule in various circles. I received this email recently, from someone calling themselves, of all things, Pig Wheeky:

“I know u. I know your secret. Fat stupid ugly girl-no friends-no one loves u-u cling to your fictitious difference-to prove u r not insignificant-dissociative, gay- what next-how can u look in the mirror-how can u pretend in the face of those who have suffered real trauma-kill yourself-your deceit-your lies r unforgivable -u ir sickening-always know that we see through u. U r harming people that have genuinely survived horror-u r unbelievable-i know u dont care-u r borderline and psychopathic-u cant even look after an animal without rspca on your back-i know u -loser-yes i know-and u know what u r-u would b surprised how many of us c through u-u r your own hell-and u will reap. :)”

What fun. There’s nothing quite like linking borderline personality disorder and psychopathy to really give yourself credibility, and the movement between the personal “I” and attempt to sound like an important majority by using “we”. It’s all a bit pathetic.

I’ve received hate mail before, although admittedly from people I’ve known. The internet opens up so many opportunities for people to behave appallingly and hide behind anonymity. This kind of bullying is the crap that people like me face. Being open about these kinds of things leave you vulnerable to people who fear and hate and who give themselves permission to be abusive to those they deem deserving and still feel like ‘good people’ themselves. Bullying in the form of instructions or requests that someone hurt or kill themselves is common and disgusting. It’s taken awhile for policies in schools and the like to catch up with how vulnerable people can be coerced into harming themselves, to the sadistic delight of abusers who don’t even have to get their hands dirty to inflict harm.

Anyone who uses tactics like this has no claim on the moral high ground, and certainly none whatsoever about how to best care for and support people who have experienced trauma. I don’t believe anyone is insignificant. All of us are unique, have our own stories and paths to walk, our own souls to care for. All of us have to wrestle with the task of how to navigate a complex, at times very painful life, and be as human as we can, to grow into the best we can be in values and character. Some of us grow kinder and gentler through the awful things we experience. Some of us grow colder and vicious. Those who become vile are to be treated with great caution, and regarded with deep sadness. Once they too were innocent. Corruption is always a terrible loss of who they could have and should have been, what they could have brought to the world. We who are abused by them are still, oddly, the lucky ones.

Having said that, we need love and care to survive and endure the cruelty and brutality of these kinds of assaults on ourselves. Every day people suffer due to bullying like this. People are made to feel alone, ugly, less then everyone else. The wounds can be deep, can even be fatal. Love heals. Anger cleanses. Hope brings life. In community and with connection we are restored.

Thankyou to all of the people who love and support me, to the community I’ve been so blessed to find. Remember all the people like me who don’t have this. Look for them, shield them from this kind of destructive hatred. Shelter each other. Help each other to be the best we can be.

Empathy and bullying

Amanda Palmer wrote a piece about empathy and cyber bullying on her tumblr recently that I found thought provoking.

I think people misunderstand, sometimes, the difference between “empathy” and “sympathy”, and this is getting us in trouble. Sympathy is closer to pity. Empathy, which is essential for being human, means that you can imagine yourself in some else’s situation, good or bad. And feeling *real* empathy, even empathy with “the enemy”, with the bottom of the barrel of humanity, with the suicide bombers, with the child molesters, with the hitlers and the osamas, is necessary. If you, as a human being, can’t stop and try to imagine what sort of pain and agony and darkness must have descended upon these people to twist them up so badly, you have no roadmap to untwist the circumstances under which they were created.

via i was just answering a bunch of questions for a… – AMANDAPALMER.TUMBLR.COM.

I wrote this as a comment on the piece:

As if empathy comes only from our best selves, as if it’s only our kindness, or generosity that allows us to reach out and feel what another person feels. Our darkness also unites us in strange and painful ways, other’s pain or violence sings to our own, make claims of kinship where we wish there were none. We like to make the evil ‘other’ – those abusers, those nazis, those demonic monsters who have no connection to me, no humanity left in them. It’s painful to recognise that a lack of humanity is part of what it is to be human, that our humanness is vulnerable, it can be torn off, or cast off, and we can still walk and speak and eat and do violence. Empathy reminds us that the monsters do not merely prey upon us, they are us, defiled. It reminds us to treasure what makes us different from them.

It’s a topic I find relevant in many areas of my life, as an artist, and as a service provider in mental health. As soon as there is an ‘other’, you risk your bond to your own group by empathising with them. It’s one of the things that makes peer work so difficult and draining for me, the service users and the service providers can be strident and aggressive in their demands that I orient myself as one of them exclusively. I’ve lost count of the number of times staff in mental health have criticized me for ‘wearing my peer worker hat’ or my stance on how harmful our use of professional boundaries is. I’ve also struggled with how demoralising and painful it is when other service users criticise harshly, with no sense that you are also a person who is at times vulnerable, and that all relationships have some level of mutuality to them. Other peer workers can also be a group of their own, demanding adherence to their ideas – after giving a personal and exhausting talk at a conference once, I had to walk out of the next talk where a peer worker was berating a room of us for being insufficiently familiar with the world of academic research, and for getting jobs through people we knew. All groups place demands upon who is permitted to be a part of them. All groups have their ‘other’.

At a micro level, this dynamic of the ‘other’ and the risks of empathy play out in groups or friendship networks in my life in a way that wearies me. I’ve always empathised with the other, and this is the quality that people love in me when they find themselves being the other, and fear and resent in me when they find themselves hurt, stressed, or angry with someone else in the other role.

I’ve often been the ‘other’. I’ve been a lonely, bullied little kid who craved friendship and companionship with a deep longing that left me suicidal by the age of 10. I work hard now as an adult to be aware of the legacy of years of unmet needs, which tend to express themselves through numbness, bitterness, insecurity, and instability. I also work hard to resist the temptation to be comfortable in my groups, my social networks, and my work in a way that perpetuates abuse. As a service provider in mental health, I find this an extraordinary challenge. On days when I am too exhausted to do the hard work of diplomacy, to reassure angry and hurt people (which is not just the clients!) that I see their point of view, I’m at risk of rejection and hostility. It’s not a secure place to be.

This is one of the dynamics they don’t talk about in bullying. I moved to a new school in year 4. Due to a bunch of class dynamics that had nothing to do with me, I was instantly at the bottom of the social ranking and very vulnerable. Several students targeted me for bullying. This began a spiral of alienation and abuse that persisted for my school life. I was in a bad place where students who liked me were afraid to connect with me in case they were bullied too, and other students who liked me were afraid to tell their friends to stop bullying me in case they then became a target.

I didn’t stay at the bottom of the social network all the time. Sometimes something would shift my place in the culture. One year the class took up gymnastics and swimming in sports, where I excelled. I gained some respect in a subject where my appalling lack of ball skills and issues with feet and joints had left me the typical student chosen last for every team. Here’s the deal though, just because I was no longer on the bottom rung of the ladder didn’t mean the ladder had been dismantled. Someone else took my place, someone who was terrible at swimming perhaps, or embarrassed by wearing leotards in gym. There was always someone being made to feel excluded, being available for humiliation and power games, someone that everyone else could work out their own pain or frustration upon. Kids with disabilities that were insufficiently engaging to draw the protection of the teachers. Kids with mental health problems, or with abuse at home. Kids who were identified as gay (which is not the same thing as being gay).

One year in about grade 9, I’d cobbled together a small group of guys as friends. We would hang out at lunch, sometimes after school, even go to each other’s birthday parties. Another kid used to hang out with us sometimes. We used to play a lot of foursquare or brandy, fast ball games I was never particularly good at. On this day, this other kid was hanging with us, and he was terrible at ball sports and slow at running due to medical things. My mates were teasing him a bit, in a pretty good natured way, knocking the ball away from him so that he couldn’t pick it up. It wasn’t until he started to cry with frustration that my stomach flipped and the scenario that had seemed so minor and innocent a moment before suddenly became real. I was hanging out with a group and we were bullying the one kid lower on the food chain than we were.  I ran over to him to comfort him and told off my mates.

As it happened, a teacher witnessed this and I was given a slip of paper later that week commending me for being brave enough to risk my friends being annoyed with me. Having this teacher recognise the challenges of that situation and frame my response in this way anchored an understanding of the risks and issues of bullying for me that has never left me. I learned a lot that day, especially how unbelievably minor bullying seems to be when you are not the target. I also learned that without some kind of major social influence in the class or school – if you stand up for someone being abused you are always risking abuse yourself. Every time I got off that bottom rung, I’d find myself being forced into a bystander position to watch some other kid suffer. Groups of students roaming the school to hunt down the ‘gay kid’ and intimidate him. Older students roughing up younger students in the toilets. Girls humiliating and ostracizing other girls who were from poor families, or had accidents with menstruation, or who made the mistake of letting the wrong boy go too far with them.

These cultures cost everyone in them, they are built on fear, distrust, a profound need to fit in and find acceptance that seems laughable to adults, and a complex guessing game of social worth where a misstep can cost you all your allies. Everytime we tackle school bullying by advising the victims to behave in ways that make them less a target, we are also telling them to accept their role as bystanders to those kids who become the target next.

I had a weird relationship with many of the kids who bullied me. Those who had some kind of social power and were tormenting me out of boredom, sadism, or fear of difference I rarely got close to. But kids who tortured because they were themselves being tortured often had a strange connection with me. There was an empathetic bond. I heard their stories. I kept their histories of fear and degradation safe. These were kids who’s dad’s knocked their mum’s around, or whose older brothers were creatively abusive, or whose mum’s made them keep her company in her bed at nights long into their teens. With some of them, a space would be created for these conversations, like long bus school trips. They’d sit with me and talk, share funny stories or tell me secrets about painful things. They would meet needs for safety and honesty and compassion that they couldn’t in their own friendships. I would not get those needs met. At the end of the trip we’d all get off the bus with the unspoken understanding that the truce was over and I was fair game again. It wasn’t personal, someone had to be on the bottom rung. Half the kids who tormented me only did it to make sure it wasn’t going to be them. The same dynamic happened for me in theatre, where for the duration of the play I was a valued part of a team. Once it was over I would be distraught, because my membership died with the play, and the brutal reality of my lonely life would once again return.

The problem here isn’t the bully or the behaviour of the victim, it is a group dynamic that treats some kids as more important than others, more worthy of protection, more powerful and privileged, and those at the bottom of that as fair game because they brought it on themselves. In some classrooms, those with power – kids with a lot of influence, or insightful teachers, influence this dynamic and make it safer to be unpopular and disliked or in conflict with the popular people. In other classes – like mine, there’s a dark undercurrent of abuse, violence, mental illness, pain, alienation, and rage, and these things are expressed through a brutal social dynamic that leaves every student afraid of winding up as the target.

My empathy with my bullies made life hard for me. It’s difficult to tear a kid to shreds when you know s/he’s only making your life miserable because s/he’s in terrible pain. It is also made life difficult for me because I hated that I purchased my freedom from being bullied at the cost of having to be a bystander to the abuse of another kid. I could have gone through school with a lot less bullying, and a lot more inclusion, but the cost to my own values and beliefs was always higher than I was willing to pay. Everytime I got off the bottom rung I found myself allying with the next kid on it. I never developed enough social power to change the dynamic itself.

I remember once at about 15, confronting a boy who had bullied me terribly as a kid. I was struggling tremendously at the time, and in a difficult twist of events my drama group were doing a play that included a nazi youth betraying and abusing someone. This boy had been cast in the role of the abuser. Week after week of rehearsals, I sat and watched my bully torment another person. It was a powerful trigger and turned what had been my haven into a nightmare of hyper-vigilance and flashbacks I was trying desperately to conceal. One day I went to drink from a water fountain and he came up behind me and leaned in to drink from the one next to me. I hadn’t realised he was near and flinched back. He looked at me with derision and asked why I always did that around him. The world paused for a moment.

I decided to call him out. I unfocused my gaze so that I could look him in the face without seeing him, and told him that when we were younger he used to bully me a lot. I was expecting contempt or denial. What I got confused me.

He looked suddenly deeply sad and alone. It was like I could see a child in him drop his head, turn away, and walk off down a long corridor. He said to me “You have no idea how many kids have told me that. I don’t remember any of it.” And then he walked away. I don’t recall ever speaking with him again. This is a kid who I still sometimes have nightmares about.

Those are not too uncomfortable stories to tell, they make me sound like a victim or a hero. I played that role at times in other’s lives, but I also hurt people. I made choices I now regret, I was not honest with people, I used the little power that I did have in ways that excluded and hurt others. Most of us have power somewhere in our lives. We work out our rage or our demons from the places we don’t have it in the areas we do have it. I’m still trying to make sense of this.

When I was 14 I allied with a girl I’ll call Alison who was being bullied by her group of friends. She paid a high price for inclusion in their group, she was often run down, criticised, and her job was basically to fetch and carry. I was angry about this and she and I disconnected from them to hang out with each other. I then went through hell with a classmate who fell in ‘love’ with me, and tangled me into his suicidal distress. My capacity to empathise with him touched profound unmet needs to be heard and feel connected. He became obsessive and dangerous. At the end of a six month ordeal I was left with PTSD and total confusion about what just happened and why.

Alison had her own demons, and instead of finding comfort in our friendship she became a burden. She didn’t understand the PTSD, and neither did I. She couldn’t understand my new terror of touch, my sense of disconnection, the simmering rage that lay waiting beneath an apathy so heavy I didn’t care if I died. Her efforts to connect exhausted and triggered me. One day she covered my whole desk in tiny sickeningly cute stickers of teddy bears while I was away. I often had belongings defaced or stolen by my bullies. I was furious, and choked it down to ask her not to touch my stuff.  She didn’t understand. I couldn’t explain. I had run out of capacity to cope with things that didn’t used to matter so much, like being traded in at lunch time if someone more interesting was happy to include her. Our friendship had never been strong enough or close enough to have those conversations, and when I had been in a better place I could afford more generosity for the times she hurt me. I didn’t tell her about any of this, I just retreated. I pushed her completely out of my life over a 6 month period and justified it on the basis that she had always been hard work and I no longer had the energy. She was devastated. Her every effort to reconnect was rebuffed. I took her away from her original friends, made her feel safe and cared about, then dumped her alone. She was vulnerable and bullied and left with no idea of what just happened. I was not a hero in her story. I work very hard in my friendships now, to find ways to be both honest and warm. I fail. I try again.

We can turn empathy off when it no longer suits us in ways that are frightening. It is hard to acknowledge the times we have done that, because it put us in a place where have to see our own role as something we have no respect for. It’s hard to face our own limitations and flaws, and even harder to face them and still find sense of love and self-acceptance. Empathy can also be dangerous. It’s kept me in relationships where I was being hurt, because I struggled to wrap my brain around a crucial idea: that being able to understand someone’s behaviour is not a reason to put up with it. (See Stalking the Soul: Emotional Abuse and the Erosion of Identity) Over-empathising with someone in a position of power who lacks empathy for you is extremely dangerous. Empathy has cost me my peace and my chance to slip unnoticed through high school while other kids suffered, but it’s also protected my sense of identity and values. It’s a way I connect with other people, but it also alienates me from them when I empathise with someone I’m not supposed to.

Power scares me senseless. One of the things I have learned about it is that very often, we don’t notice when we have it. We don’t FEEL powerful. We are acutely and painfully aware of every area of life where it is absent and yet often oblivious to the places we do have it. We repeat learned dynamics, and set up new relationships on the same principles as the old, with merely a shuffle in what role we now play. We demand responsibility and empathy from those who have power over us, but are frequently unaware and uncaring of the way we use our own power. We want to be understood and loved, but often there are people we wish to draw a line around and say I do not want to have to understand or love them.

Peer workers are constantly being co-opted into the role of staff, pressured to choose a primary allegiance to the organisation that employs them. With the need for work, we are in an impossibly vulnerable position, carrying the weight of the need to be or provide a voice for all the other dis-empowered people, and trying to unite two groups of people who are often hopelessly incapable of having empathy for each other. When groups are full of fear or pain, they do not allow their members to be dual citizens, and they demand a loyalty to their own members that prohibits the capacity for empathy for the other – whether the ‘other’ is a terrorist, a bully, or a victim. We see and rightly decry this process when the alienated other is someone vulnerable, but we justify it when the other is someone we need to believe we share nothing in common with.

This empathy has written me out of my plans to get a job in mental health. There are amazing people working in it, people who have found a capacity within themselves to recognise the limits of their power, and to let go of what they cannot change. I have not. I am afraid of power and what it does to someone who wields it without reflection. I am afraid of the temptation of money and group belonging and security. I am afraid of the slow erosion of values. I do not trust myself to walk that path with wisdom, only with profound regret. I cannot stop empathising, at any point, with the person in the room with the least voice and power, and it kills me. Especially when they are angry with me, disappointed in me, or critiquing my services. I find myself split between my own perspective and theirs in a way that tears my head apart. I often find myself the only person working to see more than one perspective and find a way to unite them. I still have almost no capacity to see the limits of my own reach and accept them. Being required to be a bystander to things I find unjust makes me want to burn down buildings and run screaming into the night. I don’t cope well with systems, even those I build myself.

I don’t have answers for this. My path forwards is to always do my best to live with love. I believe that empathy is crucial, not only for those who are hurt, but those who are hurting others. Not to condone or minimize, but to face the world as it is, and the potential for darkness in others and ourselves. We can empathise with people and still utterly denounce their actions and hold them accountable. Sometimes following our instincts protects us from our own darkness, sometimes we find ourselves doing harm and don’t know how we got there. Empathy is part of understanding that, making some sense of what happened in those who now lack it, and how to strengthen it in ourselves and our communities. When we empathise with an ‘other’ we stretch ourselves over no man’s land to do so. In a war, this means our guts are ripped up by barbed wire, and we risk both groups tossing us into the no mans land. When it’s to a ‘monster’, we must face the disturbing reality of our own vulnerability to losing what makes us human, and we risk the rest of the world thinking of and treating us as one of the monsters.

“I got death threats. My twitter feed exploded with more than 5,000 tweets from strangers telling me I was a un-american monster for “sympathizing with a terrorist”. People wrote comments on my blog about how I should have my own legs blown off.”

via i was just answering a bunch of questions for a… – AMANDAPALMER.TUMBLR.COM.

In our friendships, empathy inspires a level of courage to be both loving and warm in ways that power confuses and trauma overwhelms. It is very easy to let myself off the hook for hurting Alison, and yet to be deeply wounded and angry at friends who have done this to me. I keep coming back to the same ideas – that it is difficult to remain fully human. That the act of living alters and erodes identity. That love can fill our lives to the brim, and also cost us everything. That love is essential but insufficient. That the alienated are also alienating.

We think we are kind, when we are only happy

CS Lewis

There are only two motives,
two procedures, two frameworks,
two results.
Love and fear.
Love and fear.

Michael Leunig

Losing a friend

After a lovely anniversary dinner with Rose last night, we went back to her place, settled in front of the tv to look for a movie to watch, and I picked up my phone for the first time in a few hours to discover that a friend has died by suicide.

The loss is terrible. Amanda was my age, a beautiful caring person with an amazing childlike sense of humour. We first met through this blog and became online friends about a year ago, meeting at events here and there. I was hoping to get to know her better over time. We have mutual friends who are also hurting.

Rose and I, it turns out, are both sensitive to grief and suicide and react to it in very different ways. Last night was painful and fractious. Today is tender and raw. I feel dazed.

There’s an inclination after suicide to think that the person, in a sober mind, looked at their life with a detached eye and concluded that it was not bearable. Those of us who are vulnerable ask “If they couldn’t make it, how can I?”, “If all their wisdom/support/resources/insights were not enough for them, what can save me from my pain?”. I think this approach supposes a level of rational thinking, and a capacity of looking at life as a whole that many of us lack when we are suicidal. Sometimes it is not a summary of their life, it is a bad night. It is overwhelming pain, a loss of hope. It doesn’t take away from all that they’ve done, their kindness, joy, insights, tenderness, humour. Their life’s story is still about everything dear to them, the values they lived by, the way they loved, their passions and sorrows. Suicide is a part of that but not all of it, pain is part of that but not the whole of it.

This may not be Amanda’s story. I don’t know what happened at the end, if mania or despair took her. I only know my loss.

Death shatters us. Each is unique, suicide is different from accident, which is different from murder, or negligence, or long illness, or sudden loss, one person or a whole car of loved ones, a child, a parent, a lover. All have their own deep pain. All make us feel very alone. We struggle to find ways to unite deeply divided responses – I forgive you and I hope you are at peace / Please don’t go, it will tear my world apart. I love you / I hate you / I should have done more / You should have done more/ How did I fail you? / How could you do this to me? We try to find ways to speak that don’t glamorise or demonise ending your life, and it’s not easy. There’s a sudden ending to their story that we were not ready for. We haven’t said all we wished to. We didn’t know that hug would be our last. We review the past weeks and months with a new eye, jaded and worn by grief. Every word and gesture is imbued with new and terrifying meaning. We try to judge the tipping points, the final straws, the real reasons. We try to weigh your life in the balance, to work out why you left it behind. We feel sometimes that we have inherited, like unclaimed mail, the burden of pain that overwhelmed you. We feel stripped bare by the loss that love has brought into our lives.

Our culture is not good with grief. We have no shared days of mourning for lost loved ones. Grief often isolates rather than connects us. Our lives are structured in such ways that it’s difficult to find time to grieve at first, we’re numbed by work and funeral arrangements and all the administration of a life ended. Then there is too much time, alone and absorbed into a pain so deep and enduring we know in our hearts that we will never be the same and never be without it. We grieve in different ways, so that’s it hard to share, our cycles of needing to go into our pain and move away from it do not exactly match any other person. We fear death and pain and loss and withdraw from those who have been touched by it. It overwhelms us, takes us into dark places, cuts us off from life, and hope, and loved ones, and the needs of the living.

I don’t believe this has to be the way we mourn. Life, love, and death are deeply intertwined. Today, on facebook, another friend has given birth to a daughter. Her joy is palpable. With grief, we can warp around it in ways that wound us. I’ve felt this – it’s R U OK day today and I’m grieving the loss of a friend. I’d briefly thought about writing about R U OK on this blog a few days ago but let the idea go. I’ve been busy with art and business plans and relationships. I feel guilty for that. I wonder if Amanda was reading my mental health struggles here and they added to her burden. I wonder about our mutual beautiful and likewise vulnerable friends. I wonder about how to navigate a loss that is personal and public, as Amanda was a member of groups I look after. I wrestle with trying to find ways to respond that are respectful, that give everyone space to react as they need to. If I don’t take care, grief will tell me stories that harm me, like I am responsible for things I am not, or that life is brutal and without hope, or that I will never be happy again, or that love is too painful to bear. Without these wounds, grief isn’t lethal, it doesn’t destroy me in the same way.

For myself, I seem grieve best when I give myself to it. Grieving is like dying. Pain, numbness, apathy, rage, anguish. If I can accept it and make space for it, it makes me feel like I am dying but does not kill me. I make time to hurt and weep. I accept the numbness as a relief without fear or judgement. I accept the times of peace or even happiness without hating myself or wondering if I did not care enough. I move into and out of grief as my heart dictates. No one to tell me to move on or get over it, and no one to judge me for shock, dissociation, or still finding pleasure in life. I do not run from it in fear, and I do not hold myself in it to torture myself. I hold to two beliefs: they were deeply important, their loss, and my pain, must be marked and recognised. Life is also deeply important, and to be lived rather than shunned, both pain and joy. Grief then, is less a garrotte around my throat, barbed wire biting into my heart, and more a tide washing in and out, overwhelming me so deeply one moment that the world turns black and I cannot remember what life was like before it, and another moment withdrawing into a vast ocean and leaving me laying on the sand beneath an endless sky of dazzling stars. Like Persephone, my heart goes down into the underworld, and rises into spring, over and over.

This is only one way. There are a million ways to grieve. This is how I have grieved in the past, when I finally let go of the impulse to use death to terrify and torture myself. I may grieve differently in the future. I have lived in the fear of death, where in nightmares I lost all I loved. Since a small child I have attended my mother’s funeral many times in dreams. I used to drive home and see in my mind vivid images of my family slaughtered in the house and lying in their blood. My heart would pound until I laid eyes on a living person. I have been chronically suicidal and have cared for other suicidal people. I try to make peace that some of my friendships may have a short time in this world. I also rage against it, hold tight to my belief that hope is precious and essential, that our love for each other makes a difference. I remember the studies that talked with people who had tried to take their lives but survived, most later were glad to have lived, had lives they loved. Things had changed and hope had come back to them.

So, I’ve cleared a couple of days off. I’ve cried and slept a little. It’s raining softly here, I’m going to go and sit in my garden and plant some tiny plants into the earth. I’m going to give myself time to understand that Amanda is gone. I’m going to tell her how wonderful she was anyway.

Go gently.

If you need crisis support yourself, or just a listening ear, you can find hotline numbers and resources here. Read how to call ACIS.
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Staying safe in a crisis

I’m still in crisis mode here, working on staying safe until I’m in a better head space. I haven’t worked out what’s triggered this mess – that can happen and it can take some time to put things together. The task at the moment is staying safe. I have at least one severely depressed part, which is new territory for us. Anxiety is also sky high, I’m struggling to eat (or keep food down), fighting off a cold and sinus infection, and feeling very unsafe about self harm.

If the mental health system was less toxic, I’d be in care. But because it’s such a mix of good care and abuse, it’s high risk. For someone like me with my diagnoses, it’s likely that I’ll struggle to get any care at all, and that’s not a struggle I have energy for. On one occasion previously when homeless, on the run from domestic violence, exhausted at caring for another mentally ill family member, and seriously suicidal I turned up to ACIS and asked for help… I was told that I had a better chance of surviving alone than I did with their assistance because they do not treat people with DID well.

So that leaves me with trying to manage using my own resources and networks, to create something as safe as I can in my own life. I shut down to the bath if the self harm impulse is overwhelming. I’ve borrowed two bags of books from the library. This gives me something else to focus on. Sometimes they’re a useful escape. Sometimes I read things that help me in some way. There needs to be something to ease that dangerous, frantic despair, the kind that has you running into the night looking for anything that might make you feel differently. I also have movies to watch, preferably long involved ones I already know. The flavour of the week is Harry Potter movies.

Sleep and food are critical. If they are both interrupted I will degenerate into severe dissociation and borderline psychosis. I’m fortunate at the moment in that I’m sleeping. Keeping food happening is more challenging currently. When you’re very anxious your digestion shuts down, the thought, smell, and taste of food becomes unappealing. If I force myself to eat I will vomit. So I have to find small, filling meals of things that tempt me, where the smell or texture don’t turn my stomach. Sometimes this means I eat the same thing every meal – like a bowl of cereal. Sometimes this means I need a different flavour and texture for every meal for a while. This gets very difficult if you’re not well enough to drive and stock the fridge. I need to drink enough fluid that I’m not dehydrating.

I need to keep enough admin going that my life doesn’t crash. This one is hard. I’ve cancelled almost every appointment this week. I’m getting by at the moment. Yesterday I was up to cleaning all the rotten food out of the fridge. I’m keeping up with feeding the pets and sorting out the cat litter tray. I’ve paid my bills. I’ve actually contacted people to cancel appointments instead of just not turning up. I’ve taken the dog to the vet when she was ill. I’ve removed all the clothes and linen the cat has peed on to a big pile in the laundry. I try not to think about all the big things worrying me about my life plans for the next few months or years, or I become hysterical. The goal is just one day at a time. Today I’m hoping to buy milk, cordial, and maybe hang out with some friends this evening if I feel safe enough to drive and have a chance of passing for normal.

I try and stay in touch a little with other people. Facebook can be good for this, if you’re comfortable with that and know how to use your privacy settings. It gets hard to communicate. I’m mixed up. I stood at my kitchen window yesterday and simultaneously felt rigid, bitter despair about my life, and simple childlike joy. That’s hard to explain to other people. In between jags of the kind of distressed crying that we never see on TV because it involves a truly horrifying amount of snot, I look fine. Maybe a bit tired and jumpy. I spent 5 hours yesterday morning trying to work out how to reply to a text from Rose asking me how I was, while she got increasingly concerned. Don’t do that. We’ve since decided that an empty text with an asterisk in it means ‘I’m not about to kill myself, but I’m not very good and I can’t think straight enough to write to you. But I am awake and alive.’ In between thinking about dying, I’m okay, just very flat and tired. There’s even been some confusing but welcome good hours where someone happy turns up. After the first few days I’ve stopped hoping that this means the whole mess is over and getting devastated when I go down again. I also have to be careful because when I don’t feel like a complete mess, it’s easy to over reach and take risks I actually can’t afford to manage at the moment.

I’m short fused and low on tolerance. It’s important to stay away from people and situations that stress me, whether that’s unwelcome advice, overbearing cheerfulness, people who don’t get that I’m touch sensitive when stressed, whatever. Kindness goes a hell of a long way, as does feeling like it’s okay that at the moment, you’re a useless friend and a mess.

I need to not listen to the internal chatter that says things like “You’re just lazy and weak and pathetic and useless and looking for attention and could snap out of it if you really tried”. It helps when I can share that with someone who doesn’t believe it. There’s a sting in being able to confess stuff like this with someone who can say ‘well so what if it is true? I still love you’ and bring you an icecream.

I need space to be honest. My journal, a shrink, friends, somewhere I can pour out all of how messed up I really am feeling, instead of sticking to how I am being told I *should* feel in the hope that will help. Even if that means pouring out pages of reasons I’m a failure or why I hate myself. I need to be damn careful not to drown any one person in this stuff, especially not anyone who’s already vulnerable themselves – or anyone’s who’s inclined to argue about it instead of just being kind, because I might throw things at them.

I need to make sure if I can that at least one other person knows what’s really going on so that if it turns out that my assessment of where I’m up to is really off, someone else will step in.

I need a backup plan and other options in case this doesn’t work. In my case at the moment if next week is still bad I’ll be talking to my shrink. I also run a scale of stress-reduction behaviour according to degree of harm. So for example at the moment I’m struggling with a strong drive to self harm. I’m managing this using distraction, writing, wrist poems, hanging with other people when I don’t feel safe to be alone, and long baths. If I become seriously suicidal and can’t get help, I’ll change focus and let myself self harm if that reduces enough stress and generates enough dissociation to reduce the risk of a suicide attempt. I keep shifting the goals as I need to. If I’m having a good day I try to connect to my networks, get urgent admin done, and go somewhere nice. If I’ve fallen apart I consider that if I’m still breathing at the end of the day that’s a success. In the middle there is an attempt to self care and reduce stress with as little damage to myself, my relationships, and my life as possible.

On that note I’m going to fill a water bottle and watch the Order of the Phoenix.

Should we be afraid of mental illness?

Being a peer worker in mental health I’m often caught in a certain tension between the reality of my own experiences, and the ‘party line’ I often feel a certain pressure to toe. One of the areas this occurs in is the many current efforts to reduce the stigma associated with mental illness.

A couple of years ago I listened to a presentation about research and psychosis that was very interesting. After the talk, I asked the presenter what I, as a ‘consumer’ could do to help. He told me that research indicated that stigma reduction campaigns that relied on increased education actually often backfired. Giving people more information about the nature of experiences such as psychosis sometimes just gave people more information about something they were already really frightened of. What did help was humanising these experiences. Putting a face to these conditions helped people to see that we are still human, that we are deserving of care and dignity, and there is so much more to us than ‘illness’. This conversation was one of the motivations for my passion for peer work.

Currently I’ve been aware of an attitude I feel I’m supposed to express, along the lines of “Mental illness is nothing to be afraid of”. Slogans like this are really difficult to get right, because you are trying to sum up a huge concept and idea into a phrase. This is like trying to communicate advanced physics concepts through haiku. It takes rare talent!

I get where this idea is coming from.

I just find it difficult to subscribe to.

I live in a funny corner of the world where most of my personal networks are peopled with people who experience, or support someone who experiences, a mental illness. In my world, issues are the norm. This is cool, I prefer it. I fit in, I get the people, we speak our own shorthand language, complain about sleep deprivation, are sensitive about touch, navigate life with a painful awareness of our own vulnerabilities. I get that the idea of telling people not to be scared is what I’m trying to communicate when I give mental health talks and say – so, guess what, I have multiple personalities and none of them are axe murderers! It’s what I’m trying to say when I give talks about voice hearing and try to get across the message that we are not some strange, terrifying, alien species; we are regular folk, who happen to hear voices. What we’re all trying to say with messages like this is that common myths about violence, insanity, psychopathy, do us harm. They’re needless and harmful fears. They alienate and damage whole groups of our communities, leaving them alone with their demons, without help or comfort. Mental illness is nothing to be afraid of.

Here’s the other side though, I know what it’s like to be suicidal, constantly, deeply, permanently thinking of death. I know what it’s like to be afraid of myself. I know the shame of waking up and finding fresh self harm wounds. I know the misery of panic attacks, of ‘ugly days’, of ‘non-food’ days. I care deeply for others who battle things like this. I’ve been the full time carer of someone who spent 6 months in hospital in a state of intense emotional distress and a constant drive to die. I’ve cared for friends who cut, or starve, who hate themselves, who experience paralyzing depressions, horrific trauma stress, chronic nightmares… To tell you the truth, ‘mental illness’ our strange, impersonal term for so much hurt and suffering, scares the hell out of me. I don’t want it, and I don’t wish it on any of the wonderful people I care about. Watching people you love suffer, watching the cycles, the decent into their own personal hell, it’s terrifying, and it’s painful.

Here’s the thing, the people are nothing to be afraid of. They’re still people. If they were assholes before, I doubt that a mental illness has improved matters. If they were decent people, in many cases it makes them difficult to live with, but not dangerous. There’s nothing to fear from them. There’s much to fear for them. And even there – there’s hope. There’s paths through these things. There’s ways to reduce their impact, to limit their capacity to destroy lives. People change, grow, heal. It’s not a life sentence. Mental illness isn’t the grave of all our dreams for our lives.

But people suffer. And people die. You can’t work in this field and not be aware of it. The situations some families are living in is horrifying. When we paint a rosy image, when we put photos of calm, happy, beautiful people on our banners and pamphlets and say – mental illness is nothing to be afraid of, we deny the reality of a lot of people who are suffering terribly. Their pain is devastating and it is something to be afraid of. Not the kind of fear that paralyses, the kind that makes us speak up about better resources. The kind that makes us research our options, get help early and get good help, look after ourselves, stay connected with our mates, fight stigma and discrimination, count our blessings.

People are suffering, and people are dying. I think it’s okay to be afraid of this. I think that in the face of this fear, we chose to act and live with courage.

How to call Mental Health Crisis Services

Mental Health Triage is our Crisis service in SA, and whilst they have an incredibly important job, they can at times be difficult to interact with. Sometimes this is just determined by who you get on the other end of the phone and how bad a night they’ve had so far. I’ve had to call them as a carer or friend on a great many occasions, and I’ve learned a few strategies that seem to make things a bit easier for me. Your mileage may vary, but here’s my tips:

1. Have a clear goal in mind
Before you start the call, work out why you are calling them. I know this can be difficult when things are in crisis, but if you don’t know what you want, you’re not all that likely to get it. Are you updating them with important information? Do you need them to speak to the person you’re worried about? Are you hoping for a visit from their staff? Do you think the person urgently needs hospital? Do you need police support? Work this out before picking up the phone if you can.

2. Gather the person’s information
I can never remember everything I was going to say once I’m on the phone. Write down a list, and tick them off as you go. Having everything in the one spot means less fuss running to check the name of the current treating doctor, or what dosage of medications they’re on this week. The more chaos and change in the person’s life, the more important it is you take a few moments to check all your information. You may need to know the person’s

  • current diagnosis
  • medications
  • treating doctors/therapists
  • hospital ID numbers
  • full name
  • address
  • date of birth
  • phone number
  • dates of important events (eg. she was last in hospital on…, he stopped taking his medication on…)

You can still call if you don’t have these – eg. you’ve just stepped in to help a stranger in crisis on the train – but if you can put this information together first it will help smooth things.

3. Lay out the situation really clearly and simply
Mental Health Triage get millions of phone calls from desperate, incoherent, stressed out people. Assume for a moment they have no files whatsoever on your person, even if they do or should have. Give them the dot-point version (that you’ve already written down) of what’s going on and explain very, very clearly why you are concerned. For example:

I’m calling on behalf of my friend Lauren. She has schizophrenia and becomes suicidal when she is unwell. I’ve just discovered she stopped taking her antipsychotics on Tuesday, she’s not eaten in several days. She’s just phoned me very upset because she thinks her neighbours are trying to kill her. She is barricading her apartment.  I’m concerned that she is a danger to herself and unable to care for herself at the moment. Can you please speak with her or send someone to her apartment.

Don’t assume anything. Don’t assume that it’s obvious you would want the police to come, or that the person clearly needs hospital. Don’t assume that saying something like “He’s becoming very withdrawn and won’t speak to me” will ring the kind of alarm bells for them that it does for you. You need to tell them that the last time he did that, x happened. Tell them what you need and explain why.

4. Cry some place else
That sounds pretty harsh, but I’ve found that if I keep really clear in my mind that Mental Health Triage are a crisis response service, not a counselling one, I have an easier time in conversations with them. Very occasionally a lovely person will look out for you and let you talk for a moment about how you’re feeling and coping. But going in, I assume that they are not there to meet my emotional needs. I am as calm, clear, and professional as possible.

This doesn’t mean your emotional needs aren’t important! On the contrary they are extremely important and it’s best to take them to safer places they are more likely to get met. If you need to follow or precede a call to Mental Health Triage with one to Lifeline, a good friend, your Mum, whoever, then do it. But in all crises, there’s a time to cry and shake and feel things, and a time to call the police and clearly tell them your address – or whatever. Don’t get them mixed up if you can.

5. Recruit help
Sometimes in a developing crisis you have your hands so full with the person you don’t have the energy or time to make phone calls as well. If a couple of you can work as a team that can take a lot of the pressure off. I’ve done this quite a bit, someone sits with and calms down the person, someone else makes the important calls. Doing it all yourself is a recipe for burnout.

Also use this technique if for some reason Crisis Services aren’t taking you seriously. I’m sorry to say that as the carer/family/friend your experience and opinion often count for very little. If you are looking out for someone with high risk issues such as a person with Borderline Personality Disorder, there will be times when you really struggle to get the help that’s needed. Persistence is the key. Keep calling them, and get everyone else who’s worried to call them too. There are resources and supports out there, but unfortunately they tend to go to the squeaky wheels. Don’t suffer in silence, squeak as loud as you can. There’s a lot of decisions made that are more about personality than anything else – sometimes one staff member will block all access but if you call back in 6 hours the next will be on board. Sometimes you only get the service your person needs because they are fed up with dealing with the calls, and while that is awful it’s better than nothing.

6. Do without them wherever you can
Especially if your person if in chronic distress, try not to escalate a situation by jumping for Mental Health Triage every time they wobble. Look at the patterns – eg issues with medications etc. and expect more of the same. Try to take as much of it in your stride as you can. There isn’t a magic fix for these kinds of issues. As much as we told to ‘ask for help’, there is no quick way to take away emotional pain. A lot of the help and healing your person needs is probably not going to be found in the crisis services. They can hospitalise or medicate, but that’s about it really. Sometimes that’s life saving, and sometimes it’s just more running around only to have them back home in the same mess in a week, or two days, or 6 hours. It’s not always worth it.

Concentrate your energy whenever you can on the other supports – finding a good doctor, a therapist, social support, maintaining stable housing etc. Be aware of the limitations of crisis services and don’t get hooked on the idea they can offer a solution that they can’t.

7. Give them feedback when you can
Crisis services can be frankly a horrible place to work. Any kind of front-line work like this has a lot of people having the worst days of their lives, feeling totally overwhelmed and miserable. If you have a positive experience, be sure to let that person or the service know that what they’ve done has made a difference. Treat them with respect and dignity. We need to look after the good folks in these kinds of roles so they stay around and look after the next person. On the flipside, if you have a terrible experience and have the time/energy, make a complaint. Be clear about what you wanted and what you didn’t like. It won’t change the world, but it can be part of culture changes.

8. Maintain credibility
As a friend, family member, or carer, you may be quite surprised to find how little your opinion counts. This holds true in my experience, even if you have extensive experience and qualifications in mental health. That can be a shock. If Mental Health Triage or any other service decides that you are overly anxious/unreliable it will be next to impossible to get them to take you seriously. The heart-wrenching thing is that there is basically no accountability in mental health. If your person kills themselves after you spent days arguing they should be in hospital, it is extremely unlikely anyone will be held to account for it. Additionally, we are in a no-win situation where suicide is often considered to be proof the person was beyond assistance anyway. This means you are far more invested in the outcome then nearly anyone else you will speak to – often including the person you’re worried about.

It’s not unusual to find that one minute you are told your person is not unwell enough to be offered a service and the next to be told they are too unwell. You may also discover processes that make your person much more unwell and distressed such as turning them away from services and telling them “until they actually self harm (instead of thinking about it), or have active suicidal ideation (instead of ‘passive’ thoughts) they can’t receive help”. Many people in distress start self harming or planning suicide due to situations like this. Many also become aware that the services are actually harming them and refuse to engage anymore, even with the good useful ones. It’s a crazy-making process and there’s nothing wrong with you if this stresses you out terribly too – but be careful of letting them see the impact on you. It’s a normal response to cry and yell but in mental health and crisis services will be seen as a sign of you ‘not coping’ and being mentally unwell, and therefore unreliable as a reporter of whatever is going on.

You need to do whatever you can to retain what little credibility you have. That means working with the system and accepting it as it is, instead of being fooled by the packaging into thinking it’s going to adapt to you. The more you can mimic their behaviour and speak their language – detached, professional, calm, courteous – the better chance you have of being taken seriously. As much as you can, make them like you and want to help you. Don’t let them write you off as emotionally unbalanced when the stakes are this high.

9. Ignore useless advice
As a carer/friend/whatever, you will get a lot of contradictory, useless and unhelpful advice. The crisis services are really good at this in my experience. Boiled down most of the bad kind turns out to actually be something like this: “If you were less involved, no one would be ringing me about this difficult person and my job would be easier”.

I’ve had the bizarre experience of being told off by one staff member for being over-involved and not involved enough in someone’s care within the same conversation. If it can be made to be your fault somehow you will probably hear about it at some point. A lot of people who know nothing about you or your caree will tell you how to care for them and let you know they think you’re doing a pretty lousy job.

Others will laud you and invite you to collude with them in how awful the person you care about is, or offload their frustration or distress onto you. Not your job.

I’ve also had experiences of emotional blackmail from crisis services, including Mental Health Triage, for example being told “But what if someone else dies tonight because your (person) was in the last hospital bed?” Some people find it difficult to work in a service and acknowledge its limitations. When things fall apart that means it will turn out to be the person’s fault, or your fault. Expect this and learn to tune it out as much as possible when picking them up on it would only distract from your goal. Find somewhere safe to rage or cry about it later. Don’t take it on board or let people undermine you.

10. Maintain value

There’s often a conflict between your perception of the person’s value and that of the services. People do get written off in many different ways, “it’s just behavioural”, “they’re doing it for attention”, “he’s a hopeless case”. Most services are kindest to people in the first instance of crisis, in short term crisis, and to people who are from the most culturally valued backgrounds. If your person is marginalised in some way, and/or has been in crisis for awhile or more than once, then they are risk of being devalued. As this happens the services may refuse to engage them at all, and/or the ‘care’ they receive may actually be thinly veiled contempt. Some services have endemic problems with treating all people with mental health crises this way, for example both police and ambulance services have many wonderful compassionate individuals, but also many who are cruel and use abuse and neglect to harm people. Sometimes this is a lack of understanding/training/empathy. Sometime it is simply a form of victim blaming where limited resources and too many people in need are blamed on those perceived as undeserving/not really in need. Victim blaming is endemic in our culture around mental health and the crisis services are not immune. 

You may see issues such as stitching self harm wounds without anesthetic, cruel responses to distress such as isolation rooms and inappropriately high dose sedatives, needlessly rough handling, leaving people in wet/soiled clothes, deliberately choosing procedures the person finds frightening, not allocating a bed, losing personal belongings, and traumatic conversations. You may not even be aware many of these things are happening as people in crisis often find it difficult to communicate. There are many subtle ways someone can be punished if they have been perceived as ‘wasting precious health resources’.

Be sensitive to subtle signs your person is being devalued and fight back by humanising them. Dress them in good or formal clothes. Do their hair. Show photographs of their family or children. Find small ways to remind people of their job title or degrees or educational plans. Bring flowers when you visit, even if this is their 100th hospitalisation. If you can, complain about or directly confront any abuse or neglect you witness. (once in an ER I overheard staff laughing about my person while I used the public toilet) Emphasise their dignity. Make sure staff are aware you see this person as valued and you are plugged in. Having even one member of staff see your person as valued and not to blame for their suffering will help protect them.

11. Don’t let the system burn you out

If the circumstances are desperate, use every bit of leverage you have to get care. Once I was homeless along with the person I was caring for. They were in life threatening crisis and I had no resources to support them. Mental Health Triage were flatly refusing to offer any services and running us around by sending us to hospitals then losing the referrals and the case notes, forgetting we were waiting for a consult, and so on. When I complained about the situation I learned the team had assumed I had a “home with a husband and white picket fence and was just offloading family I didn’t want to care for onto the over stretched mental health system”. No one actually asked me, and these assumptions were putting us at great risk.

Once I managed to get someone in crisis admitted to hospital only by threatening to kill myself. (the logic of admitting someone to hospital on the basis of someone else talking about suicide is mind bending) Another time someone had spent over 12 hours in Emergency with open wounds, untreated and without food, water, or a bed. They finally stitched her up when I threatened to contact the local newspaper health reporter. Another time I refused to allow someone home so the hospital would be forced to admit them.

These are not things to consider lightly and they may cost you all the credibility you have built up. But while there is a lot of lip service to the idea that your needs count too, it is not uncommon for carers to pick up the tab for overtaxed services. Sometimes this is the best thing you can do – bring in meals they actually eat, make sure someone gives them a nicotine patch within the first 48 hours, correct the wrong med they are being given. But also, you mustn’t let them lean on you when it’s killing you both. It is not the person in distress’ fault the services are broken. Nor is it yours.

12. Be careful – Manage their anxiety

Sometimes the best crisis care is sitting in the backyard and throwing ice cubes at the fence, screaming in the car with the windows wound up, or 9 hour baths. For some people and in some places, crisis services can be not just traumatic but lethal. Police do kill people in crisis. You may be very low risk and find that hard to process, but it means think twice about how you navigate and advise in crisis especially someone else who is at high risk. 

Competent crisis intervention recognises that crisis is vulnerable, volatile, and sometimes beneficial. It is about connecting, validating, empathising, and de-escalating. It is profoundly human. If you want to watch competent fictional crisis intervention, checkout the series Flashpoint. This exists in our crisis services but it’s not across the board by any means, and is largely a result of informal people skills. Meaning that those who were already good at this make great paramedics, social workers, etc. And those who were already awful are rarely improved through their formal qualifications.

It’s hard to get inside the head of someone who makes things worse in a crisis or hurts someone already in so much pain. Sometimes you can understand the different perspectives better when you apply your own empathy – a nurse sick of being attacked is obviously going to be more focused on neutralising threat than emotionally connecting. A police officer who believes someone in psychosis is sick and needs treatment won’t stop to think about the process and if it’s trauma informed – getting that person into hospital quickly is their job, and it’s the person’s job to comply (in their mind). Sometimes crisis services are best not called, or called only when you have the capacity to influence, calm, and de-escalate them, too. 

***

Most of that isn’t fair at all. You’re already working hard to support the person, probably exhausted and scared out of your mind, and feeling all the intense feelings that crisis generates. Services like Mental Health Triage should get that and accommodate you and your needs too. I couldn’t agree more – and occasionally it may happen that way. But that’s not been the norm in my experience. Take good care of yourself, it’s phenomenally exhausting supporting someone in crisis.

If it all goes belly-up and you can’t follow a single one of these tips but you need them, call Mental Health Triage anyway.

If your person is dealing with anything longer term such as dissociation, multiplicity, an eating disorder, borderline personality disorder, PTSD or psychosis, you may not get any useful support from Mental Health Triage at all I’m sorry to say. The level of discrimination against dissociative and multiplicity conditions is extreme and many crisis staff consider them all faked for attention. Most crisis services won’t respond to eating disorders unless the person is in acute medical crisis and even then there’s a lack of training about what to be aware of. You may have some intense advocating to do and sometimes have to fit the services to your own approaches, such as using the ER to re-enforce that someone with an eating disorder must eat at home or they will be taken to hospital. The hospital may not be happy about their role in this process but they don’t have to be.

Your best route is to stay out of crisis as much as possible, and get good support staff on board. Finding ways to manage crisis without needing services can also protect you both. You may need to get private hospital cover and look for a psychiatrist with admitting rights instead of risking the public system.

It’s also important to be aware that the highest risk time for issues like suicide is often just after the sense of crisis has eased. Discharge from hospital for example, is a common time people are highly vulnerable, traumatised, and feeling very alone and exhausted. While this has been widely recognised for a long time, in most settings little has been done to address it. Sometimes not being able to access services is a twisted blessing in disguise.

Good luck, take care, and get some support.

Mental Health Triage in SA: 13 14 65
Lifeline: 13 11 14

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.