These random reflections are inspired by conversations about diagnosis, choice and control in mental distress. I wanted to explore my own from a distance, and see where ‘control’ lies. I hope this helps others.
The neat trick
At the best of times, It is hard to make sense of thoughts, sensations and emotions. We are an earth-bound, jumble of embodiment, winging it (sometimes whinging) through life. We try to make sense of what happens in the world and to ourselves, and adopt temporarily convenient ideological positions and habits that we like to think help. And we like to tell people about, and justify, our views. A lot.
Many of these ideological postures and habitual patterns are hard to break. We occasionally notice our physical habits, and even acknowledge how hard they are to break. But not our mental and emotional ones.
The neat trick of the mind is to think we are in control of it. But anyone who has sat still for more than thirty seconds to listen to what’s going on in there will know – I mean, really know, that we are far from in control. Try now to count your breaths in and out to 50, or even ten… distracted? Much?
How much harder when your brain is fucked? Ten times? A hundred times? For me, immeasurably.
The broken compass
When you have a physical problem, the mind usually can make meaning out of what is going on (I know pain gets in the way and distorts both perception and response). The diagnosis, its relative certainty, its attachment to purposeful treatment (sometimes) can be soothing. The mind can be a decent compass in a physical storm.
When you are in mental anguish, the compass is broken. It swings wildly.
In the last year, when I have had re-emerging bouts of ‘anxiety’ (I am not even sure this is the right word any more), my thoughts grew oppressive. The clearest I can be is that the nature of my thoughts change. It is partly to do with negativity – it may be about me, but it is as often as not about purposelessness and futility (a sort of existential angst). Or the replaying of stupid stories. And the emergence of peak feelings of uncertainty and fear.
My six years of hell when I was between the ages of 25 and 31 were preceded by ten years of ‘holding it together’ and emotional suppression. I embodied a story of superhuman strength – I was tough and proud. Bullshit.
This is why I shudder when I hear heroic tales of youngsters being ‘tough’ and ‘resilient’ through hard times, gaining lots of good exam results and being ‘good’. That was me and there was nobody to catch me when I fell later. When the story crumbled…
Mental health problems often come with the pain of having to give up the stories we tell ourselves or that others tell of us that have become ingrained. These stories must become unsustainable in order to find other stories that serve us better.
But oh, the pain of the boat’s ungovernable steerage through the hurricane. Our identity – gone. Our relationships with others and ourselves – gone. Our future – gone (it seems). What is interesting (that cold, academic phrase) is that in our hell of suffering, we believe our negative stories with such intensity – it is almost a rebound from the ones we held ourselves up with – this is real. Bad is real. Forever and forever – the devil certainly has the best tunes when in distress.
For me, it was yes, to do with the negativity of thought. But it was as much if not more to do with intensity (or volume) or frequency (the relentlessness of the fears and ridiculous thoughts – thoughts about thoughts about thoughts). I am never free of negative thought. I am never free of horrible feelings. But in periods of calm, I can watch them go by. That is why I like mindfulness.
But when ill, it is like somebody retuning a radio to a foreign station and ramping up the volume and leaving it on all night. A dwindling part of me is torn – between fighting against the noise and acceptance. Maybe mindfulness ain’t so good then. For some, it will focus them on the noise – for me, there has never been any other choice, so my healing has always been about deeper and deeper acceptance. But for others, my hunch is that mindfulness may not be right. Not sure about this one.
People without mental distress also try to balance their responses to the inside and outside world – between ‘having the serenity to accept the things they cannot change, the courage to change the things they can, and the wisdom to know the difference’ as the serenity prayer puts it.
But when you have tipped into another ocean of distress, you have little choice over what your mind does – one part of the mind fights with other parts, is the judge, the prosecution, the defence and the jury. All thought is fight, fright, flight. Over and over and…
You see clearly that all thinking is temporary and no ‘ideas’ can soothe more than temporarily – you actually have vivid insight into the lack of substance of thought, that it is a flimsy veil of identity that is easily ripped apart. But when you are in the midst of turbulence, you seem to have no distance – no detachment – no place of rest. It is exhausting on top of painful.
The above is one reason why having a ‘diagnosis’ is fraught with difficulty. When I was very ill, I was desperate to have one. I was like a child demanding that my ‘parents’ (doctors) should know what was happening to me, that they could provide an explanation, but most importantly stop the pain. But a diagnosis did not ultimately help – I think it contained the psychiatrists’ anxieties more than mine!
I spy conversations on social media about the tensions between a more ‘formulative’ framing of mental health problems (and for some the desire to ditch DSM categories) and the more traditional defence of needing a diagnosis. I am cheered by the dialogue – I think that whatever way provides a sense of meaning or helps in some small way to restore a sense of control is good.
I am concerned though about ‘anti-stigma’ campaigns that, with good intentions, equate mental health problems with physical health problems. It is good to bring ‘mental illness’ out of the shadows. It is good to raise awareness of treatment options, though it should be said, it usually ends up with drugs or incarceration. In fact, it always has – there has never been a golden age despite the political opportunists raving about the 90s and how it all went downhill from then.
A diagnosis can be a key – out of the prison cell of suffering if it helps make sense and restores some feeling of control; or can lock the cell and restrict understanding and narrow the lens through which a human being is seen.
I am worried that some anti-stigma campaigns will, unwittingly, medicalise and imprison people as much as free them.
Nearer to reality
One of the other mistakes that can be made is to assert that people in deep emotional or cognitive distress can easily ‘take control’. God, wouldn’t I have loved to! But if you’ve been there, you know it’s not a lack of desire.
Ironically, people in mental distress see through the masks of humanity more clearly than most. Not only have they been in the depths of hell, but they have insight into the permeable layer between ‘normality’ and ‘madness’ – they see clearly how vulnerable we all are. They/we have been closer to emotional and spiritual nakedness than many – it is not pretty, but it is ‘real. They whisper to you – watch out, it could be you…
We see that ‘reality’ is shifting, transitory, and that, ironically we all have to ‘make meaning’ in order to survive – that the human is a meaning making machine. This is another cruel joke. At a time of complete loss of control over mind, thought and feeling, we see the only stark ‘choice’ we all have - to live (and perhaps love, as Auden put it) or die. That is the control we have. It ain’t much, but it is all.
Maybe that’s why people fear to engage. We remind you too much of you. And the sheer endurance needed to live a life. And the void. This is also why people who have been through stuff need to lead mental health organisations and campaigns.
Some of the above also explains I think why imposition of meaning – imposition of a diagnosis – can feel so like a sham. Those symptoms that drop into a classification bucket perennially fail to get at ‘what it’s really like’. And if the drugs don’t work either – double whammy - that’s when we realise that even those ‘parents’ have not got it in them to rescue us. That moment in any journey of emotional distress is almost unbearable. Almost.
We have gone beyond what most have witnessed. What most would ever want to know.
In hindsight for me, that is the moment when recovery and healing may start. For a while, the realisation that only you can sort this out – that only you can journey through the storm, broken compass and all, is impossible to bear. It is Cape Horn. Impossibly lonely and terrifying. Almost.
So where are care givers? At that point you need different sorts of relationships, different friends, to help navigate – maybe loved ones (the ones that haven’t abandoned ship), good therapists and friends are lighthouses? The flashing red light is a fleeting but insistent reminder that you ‘can’ make it to the harbour or out-ride the storm. But it is your boat, broken compass and all.
I wish you all the best.
If you liked this blog, there are loads of others at www.futurepatientblog.com – on mental health, patient and public engagement, healthcare… and poetry.
© 2017 David Gilbert