This a first for The Diagnosis of Exclusion. Normally this blog is full of the guff that spews out of my mind but this time it’s a response someone sent in to one of the earlier blogs I did. I thought it was too good to keep to myself so – this is what it’s like when our best efforts to keep someone ‘safe’ aren’t wanted. We can help in lots of other ways. Enjoy.
(Obviously you can all scratch your chins and wonder whether I would have shared this if they didn’t back up the point I was making)
Some time ago now, Occupational Therapist Keir Harding wrote a piece on his blog – ‘The Diagnosis of Exclusion’ – about the professional response to patient self-injury within an inpatient setting. The post, entitled ‘Use A Little Restraint: Why People Who Self Harm Must be Forced to Stop’, is one I’ve found myself returning to again and again as I reflect on my own inpatient experience.
I am the patient Keir writes about, you see. I mean, I’m not – I know of Keir as a fellow Tweeter/blogger in an online environment only – but for a number of professionals in similar positions, I have been.
Way back at the beginning of my most recent, all-too-lengthy hospital stay, I was admitted for suicidal ideation – incessant thoughts of self-destruction having taken over my brain. I was hopelessly low; had almost entirely given up. I was putting myself in dangerous situations with no regard to their possible conclusion and the obsessive plotting of these scenarios never seemed to cease. I was in A Bad Place. The professionals admitted me to hospital from a very genuine, very human desire to keep me safe.
Unfortunately, hospital is not a place that makes me very safe.
Struggling to cope, in the depths of my own despair, I am thrust into the midst of 25 other people’s chaos and distress. The ward is loud; unpredictable; and occasionally frightening. I am on an unfamiliar island, surrounded by a shipwreck of strangers going through their own shit. There is little privacy; no personal space; the flimsily-curtained bed area providing limited comfort or retreat from the sounds of shouting and alarms and wailing and vomiting and other people’s private tears. It is intense. I exist on high alert; the volume of the whole world suddenly increased.
I am permanently on edge. They are worried for my safety so I cannot leave – not even for a five minute break. I am trapped like an animal in a cage and I begin to feel wild like one, untamed.
These feelings only feed the hopeless voice inside my brain. Unable to go anywhere – distanced from everything that I know – I am cut off from the tools that help me cope. If I wasn’t managing before, now there is no hope. I cannot go for a drive or take myself for a walk to put space between my feelings and me. I cannot bury myself in familiar blankets or use my sunset clock to initiate sleep. I cannot lose myself in the kitchen, cooking up a distracting kind of feast. I cannot run or swim or go to the gym for an endorphin buzz or release. The things that help weren’t really helping, but now trying is not even an option – they are no longer accessible to this locked-up me.
My head is a witch out to get me. The ward is a cauldron bubbling relentlessly. People scrutinise my every word or action, further turning up the heat.
I feel unable to escape; desperate for a moment of peace from the noise of the ward and the noise inside of me. Feeling like there are no alternatives available to me, my last resort is the only thing for which I can reach. I hurt myself – clumsily, sneakily and somewhat superficially – finding respite in the familiarity and sense of relief.
I am caught out, eventually. They have always known this to be my final coping strategy, but here, on their ward, it is no longer okay. I am in the bad books. Whether I am just deemed ‘trouble’ or they are genuinely worried about me remains an uncertainty, but whatever the motivation they decide to observe me. Now the intensity of the ward has a new dimension – a shadow constantly following; a pair of eyes, even in the bathroom, watching me. For an anxious introvert who values her own space, this is torture – completely unbearable to me. In their determination to maintain my physical safety, they unintentionally ramp up the distress levels to Beyond Tolerable within me. I cannot cope. I crumble completely.
In my crumbling, I continue to reach for the only thing that might sustain me. My self-harm is ever more secretive now; ever more rushed, haphazardly. I am snatching moments so tiny that my actions become desperate and dangerous – minimum time for maximum effect. My harm takes on a shape it has never before been.
They give this different shape a different name, when they finally make the discovery. No longer satisfied with “self-harm,” they give it a new title – label it something previously unknown to me. Words are funny things, aren’t they? I consult with Dr. Google, obviously – trying to make sense of this wordthey’ve handed me – and a whole new world of self-destruction is revealed to me.
Once I step into this world, there is no going back – the style of the old world no longer effective now this one has been opened up. I am part of this new world now … And the new world very nearly kills me. Again and again and again, it almost kills me.
There are seizures and blood transfusions; blue lights and crash-carts at the ready. There are staff who alternate between desperately afraid and desperately angry. They want to make it better, desperately. In a bid to do just that – to make me stop; to fix things somehow, dammit, please – a whole new universe of nursed-in-room; 2:1 obs and restraints become my reality. In a vicious cycle I cannot break, this fuels the very thoughts and feelings that drive this behaviour in me, and so it goes on continually.
I am a monster; a burden; creating a mess for everybody. I am vulnerable; weak; stuck under the microscope; a freak show on display for all to see. I am broken and afraid. Trapped. I am hopeless. I admit defeat.
I don’t know what to do. No one else knows what to do with me. They stick me on a CTO but don’t know how to treat me. There are rumours of a more secure clinic somewhere far away and they frighten me. I was admitted a simple case of depression with some suicidal thoughts, but now I hear words like “Complex case .. Dangerous patient .. Challenging behaviour,” whispered regularly. I do not recognise this description of me. I have no idea how it came to be.
In the nine long months I spend on this merry-go-round, I lose sight of myself completely – entirely lose my sense of identity. I don’t know who or what I am anymore and the fight has gone right out of me. The world is dark. The end seems very near and I embrace it both fearfully and thankfully.
In the end, it is luck alone that seems to slow the merry-go-round for me. Luck; a team of professionals whose intentions are good (even though their actions don’t always help me); and someone willing to take a chance on me.
It is the hope of supported accommodation that begins to break the cycle for me: a tiny glimmer of something different to try; an alternative direction, finally. It is a safe and supported setting, but with a space that is entirely mine, away from the ward’s intensity and void of constant scrutiny. It is a limited resource and a rare opportunity and, in that sense, I got so very lucky. I have no idea how or why, when many other people in many similar situations haven’t been given a get-out so freely. I don’t dare to imagine where I’d be now had I not been.
As it is, things haven’t been easy. I left the hospital with more dangerous behaviours; more ingrained self-loathing; more fears and worries; and more negative coping strategies. At the same time, I left feeling weaker; less resilient; less able to cope with the everyday; less sure of myself and my beliefs. I feel like hospital destroyed my confidence and deskilled me completely. That’s a daunting and difficult place to be.
But I can say one thing for sure: it’s a thousand times better than hospital; a thousand times better than that merry-go-round; a thousand times better than what might have been. I am here now; home; alive; and so incredibly grateful that I got lucky.
So what’s the moral of the story? I’m not sure that there is one, really – simply a single person’s experience written down to speak to you freely.
I don’t wish to be critical of my care team because I know that they make difficult choices with limited options on a daily basis and I have a lot for which i am very grateful to them. Neither do I wish to rule out the usefulness of an inpatient setting entirely – there is certainly a place for it, I believe. I guess I do wish to get those brains whirring around its therapeutic effectiveness and how this might be improved; to wonder about which behaviours we might frown upon and how we respond; to ponder the impact of the language we use; to reflect on the role of positive risk taking; and to consider how we collaborate with and empower people to find alternatives to move on..
These are not easy challenges for anyone – on either side of the experience – to face. Thank you, sincerely, to each of you professionals who navigate this minefield every day and particularly to those of you who take these moments to be challenged and reflect on how best that might be done!
Keir offers training, consultancy and therapy around complex individuals via www.beamconsultancy.co.uk