Goals for SA

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

The Dissociative Initiative

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

Here are the plans for the next weeks and months:

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

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Where does my psychosis come from?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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