When it changed. Part 2

Learning that things can change… Continued from Part 1

Last time I wrote about the compassionate mind approach and how important it is to me in my approach to my mental health. But before I embarked on my compassion focused therapy, one of the key things I needed to learn was how important experiential learning was. The act of actually feeling something different, rather than learning things through theory or understanding. I wanted to explain in this post how I learned that experientially.

Just before I had started compassion focused therapy and acceptance and commitment therapy in 2014, I had some CBT. I have had 6 different CBT therapists throughout my life since being a teen and have really struggled to make much headway with any of them. The last time was a bit different though as it taught me something really useful about myself and how I could make real changes to how I felt and behaved (in small stages).

CBT:

I’m no therapist but from my experience of it, CBT (Cognitive Behavioural Therapy) is all about the links between our thought processes, behaviours and the feelings. The basic idea is that we can change how we feel by changing how we think or how we behave. In the past most of my CBT had been based on the thinking side of things. I have spent a lot of time challenging my negative thoughts with evidence, writing thought diaries, focusing on positive thoughts and other exercises. They are designed to help you see that your thoughts are not always rational and that you do not have to believe or act on them, or to help you see the positive as well as the negative aspects of your life.

I naturally gravitated to this approach because it felt so rational and didn’t seem to require much “touchy-feely nonsense”. I realise now this was because I was already doing them, in an incredibly critical way, to invalidate my own feelings everyday. No wonder I took to the exercises. This is not how they are meant to be used, but there’s not enough focus on validating feelings or experiences of injustice, or questioning the tone with which you apply these “corrections” to your thoughts so they never made me feel any better and nothing had ever really changed.

Although the approach felt right to my rational and critical brain, I can now see that another part of me struggled a great deal with this. It smelled the faint hope of validation, soothing, emotional connection and understanding that could not be properly fulfilled in the prescribed CBT service I was in. I became incredibly preoccupied by and anxious about what the therapist thought of me and how I was expected to behave in sessions. I also started feeling uncontrollable urges to just spill my guts about every thing that had ever happened to me. Then followed extreme shame and feeling stupid at all the stuff I had shared and an overwhelming desire to take it all back. But I couldn’t. So I’d spiral into depression and find it all too much. This was the part of me I suppressed and invalidated to cope. But this was not a sustainable strategy, as there was always a breaking point, when it could not be suppressed any longer.

But I did carry on – and in a way I am glad I did because I did learn a really valuable lesson from using CBT from the more behavioural side of things – through graded exposure therapy.

Though my ability to cope with my phobia may have been influenced by trauma, I feel that my response to spiders, could be changed and I did (and still could) benefit from more of this behaviour change to increase my quality of life.

dandelions

My spider phobia was literally taking over my life. I could become overwhelmed and suicidal if I noticed spider webs in my bedroom, often more so than if I found an actual spider.  I spent hours awake at night swearing I could hear them scuttling around in my room and squeaking to each other (yes, I know they don’t squeak!). I simply could not cope with the knowledge that spiders existed in the world and thought about it all the time.  I had always had some level of fear of them, but it hadn’t taken over my life to this extent, for this long before. What I am amazed by is that I would spend my nights petrified, disturbed and desperate to end my life, then spend my days at work feeling relatively okay, happy even, only for it to all come back again at night. Eventually, this way of “coping” took its toll on me and it became impossible for me to function. So when people told me I was brave for facing up to my phobia, I don’t think they realised quite how little choice I had in doing so!

Although I was struggling with the therapy relationship and past traumas resurfacing, I did go through the graded exposure to spiders before my urgent referral to CMHT in 2014. I struggled with identifying how scared I felt in the session and I struggled to explain what it was that scared me. I also wish the therapist could have provided spiders himself. I feel I could have progressed quicker, or had more time to become accustomed to touching them if I had “spiders on tap” (a phrase will never repeat again!) in the sessions that I didn’t need to bring in myself.

But I did move from exposure to pictures of spiders, to being able to sometimes capture a small one in a jar and eventually to holding a dead spider in my hand in sessions.  I am by no means cured and I have to remember to keep up some of this work (which I struggle to do without support) to keep it all at bay, as otherwise it returns with vengeance.  And although I haven’t had the courage to touch a spider again since the sessions ended, I have got used to the delicate spiders that hang upside down, even if not the scuttly, running around variety (those are not their proper scientific names).

They still rule my life more than I can deal with sometimes and still trigger crises, but not as much as before. I will probably try to find some top-up help to improve this situation if I can but it is hard to find support for this as I also know the difficulties I had in the therapy relationship when I was doing this work. I am considering the day course at Bristol Zoo with relaxation, and gradual exposure and handling of spiders to avoid the potential ongoing therapy-relationship issues.

The point is though, something that I thought I could never change – changed.

I can now, 3 years later, still let at least a few of those delicate dangly spiders share a space with me without becoming overwhelmed. It might seem like I still have a lot of struggles with spiders but that has been a pretty big shift for me, that has stuck around for a while. And more than that, I also started to feel some hope that other things I felt and thought could be changed, that my mind was not completely fixed in these thoughts feelings and behaviours I’d always had.

What had I learned?

I had learned that when you actually experience something and it feels tolerable or relatively safe at the time, your brain learns to change and widen what you can tolerate.

This was actually a really crucial lesson for me. I usually try to think, analyse, fix etc. I learned that unless I experienced different ways of being, behaving or feeling, no amount of analysing, thinking about, writing about or challenging my negative thoughts would make much difference to my feelings or my life. I also learned that I needed to do it gently – to stretch that window of tolerance a little at a time. I couldn’t have walked into session 1 and been given a dead spider to put in my hand – that would not have helped – it would have freaked me out and made things worse.

Indeed I think this is what had happened in the therapeutic relationship itself – whilst doing this work on my phobia. All my interpersonal trauma stuff was way out of control and triggered and overwhelming. This was exactly the wrong way for me to approach my difficulties with trust, people, past traumas and hurt – I was plunged into too much exposure to “care” and “support” too quickly with too little time, validation and connection. What was working for my spider phobia was re-traumatising for my other difficulties.

And yet, I am glad I did learn this lesson. At the time, when I would never have contemplated any other therapy than the rational, relatively non-touchy-feely CBT, to gain tangible change in my phobia through this process was invaluable to me in learning that things could change. That I could change. That things could feel different.

Two lessons then:

To stretch yourself gently without overwhelming

To learn by doing, feeling and being makes real change happen

 

Going through life backwards – Adversity in Childhood

Re-written based on a 2-part blog post on the Rape & Sexual Violence’s website

A letter to anyone who has had to go through life backwards.

I am not talking about time travel. I am talking about the order in which we learn “life lessons” and how adversity in childhood means you might have to learn life lessons in the wrong order and why that might be harmful, but why there is also hope.

We come into this world a soft, squidgy completely helpless being. We have to win people over with our lovely smell, smile, gurgle, squidginess and burps or we will die. And that isn’t to exaggerate the need for love at all –  it is, at this stage of our lives, life or death. Without someone who loves us, who would protect our squishiness, or feed our bodies, or train our brains for life? To our minds, love is survival. No less than food or water. 

For most of us, as we get older, things get progressively more complicated. We start out with Grown Ups Who Know Things and care for us and teach us how the world works. They seem to be magical all-knowing creatures and they are safe. As we get older we learn that Grown Ups aren’t magic. They don’t always have answers, sometimes they have wrong answers, and that no one really knows what they are doing and that people can hurt each other.

At then at some point we realise that we ARE Grown Ups and it’s scary and we wish there were Grown Ups to hide behind. If we have chosen to create mini humans, or if we have a job where we hold people’s lives in our hands, then this feeling is probably magnified. It descends upon us as our first little wriggly squidgy thing appears in our arms and we can suddenly see that its very life relies completely and utterly on our ability to be a Grown Up. We aren’t ready. We are stressed and freaked out and overwhelmed. We are at the beck and call of beings that need so much. All of the time. And we are knackered, Never have we been so knackered. As we get older, our bodies start giving up, complaining all the time. We have to face death as we lose friends or family. We might need to start caring for our Grown Ups, who suddenly seem so small, fragile, helpless and squidgy themselves. We might go through traumas, divorces, moving house, illness, redundancy and bereavement to name but a few of life’s difficulties. Our brains may become fried and we may collapse, especially if we have been particularly unlucky in life. And we feel like we are losing our identities – our Selves.

Life is hard. We wish we could just be a carefree child again. We hopefully will find support, a way to reconnect with ourselves and our loved ones. And though the path may be difficult, and we may need therapy, hopefully, we will eventually find our way back to some balance and meaning again.

slinkyfairy

We are all human and we all feel pain and loss but some of us learn our life lessons at the beginning of our lives.

These people could be rich beyond your wildest dreams, or poorer than your worst nightmares. They might be fat or thin, loud or quiet. There’s no class of person that is immune, but people from poor families or from other marginalised groups are more likely to be in this group of people.

We come into this world helpless too, but there’s something missing. It might be food, it might be physical or emotional safety, it might be stability or it might be the feeling of being loved or nurtured. Even when we are physically safe and fed, a lack of nurture and acceptance feels like life or death to little brains that equate love with safety and survival.

We learn very early on that no one knows what they are doing. That we have to be our own Grown Ups. We learn that people hurt each other or that there are a hundred different ways that we are unacceptable or unlovable. Our brains can react quickly to this threat to survival, sometimes, by trying to be acceptable to everyone. Sometimes by lashing out and being angry, suspicious and defensive. We are constantly alert and focused on possible situations where we will come up short, or worse, attacked or hurt. Maybe everyone around us needs something and we are always at someone’s beck and call. The Grown Ups might be abusers, neglecters or simply not able to care for us enough. Sometimes they are all of these things. Our bodies start giving up or we may need to face the realities of death or we may see our Grown Ups helpless, fragile and in need of care while we are still children.

These are life lessons that overwhelm adults, but we, whilst still children, must somehow find a way to grow up with overwhelming feelings, exhaustion, fear and pain as routine parts of our lives. We can lose our identities and our Selves, before we even form them.

So as we do grow up, we replay in our minds and re-enact in our lives the traumas and stresses of our childhood. We find ourselves dragged back into the same situations we want so much to leave behind. Because there was no “before”, it’s not always possible to tell that there is a possibility of something different, or better. We are stuck – angry, scared, knackered or collapsed.

Many will not find the right support and this is a much under-estimated human tragedy, as is the fact that much of this adversity may have been preventable.

If we are lucky though, we find support and we can slowly, extremely painfully and maybe with many false starts, find a new way of being in the world. Our child parts, locked away for safe-keeping might be vulnerable and frightened when we first connect with them again. Everything may seem new, but with strange, sharp strings that attach to our past. But with care and support we can start to let our child selves grow and learn. We can take them to places and see things real children could not. With support and safety our child-parts are able to wonder at and feel awe at simple things in ways many adults struggle to do. We may have spent many years and tried many ways to rid ourselves of our vulnerable, helpless, squidgy parts and we may have to some extent succeeded in ignoring them.  But we can still learn to nurture and care for them. And it is never too late. Our brains are like putty. Really dried up, rigid putty, that you can slowly carve new grooves in by just going along the same track, over and over.

We might collapse on our recovery journey – like a star into a black hole. Maybe more than once. But each time we come back a little brighter, a little more resilient and a little more “us”. Our tendency to shine is as strong as our tendency to collapse. While it’s deeply unfair that we should have to do this, when we do find ourselves around the right people, with the right support and safety, it starts to become clear that because we fall apart into so many pieces, there are more opportunities to shape ourselves in different ways. We realise that because our child-parts are in so much pain, it becomes harder to ignore their needs or disconnect from them and there are more opportunities to give them so much. And that because we have grown up in pieces, we are at once, both older and younger than our physical years. We are still so much the child we were, but we are also wiser from having learned our life lessons so early. 

We may face more sadness and difficulties in our lives as we carry on, but we need not lose heart and we should be proud of ourselves.

Because whatever we do (however small or big we think our achievements might be), we have given it all we have got.

We have faced demons and battles many would never understand. We are creating ourselves from a thousand shattered fragments and we have seen the other side of a black hole.

We are survivors.

There’s a previous post on this blog about Adversity in Childhood from a Public Health Perspective here.

Reflected Realities at The Arches Project

“The Road Less Travelled” – self-portrait with Silver Birch and lichen. (Faber-Castell Polychromos coloured pencils on Fabriano Artistico Hot Pressed 300gsm & handspun newspaper yarn. (£180)

I wanted to share the piece I have created for the “Reflected Realities” Exhibition by The Arches Project in Digbeth (June 9th – June 23rd) . You may have followed its progress on my instagram page, or this may be the first time you have seen it but now you can see it in real life at the exhibition in Digbeth, so do please come along!

When the most profound questions about life have to be confronted to survive, traumatic experiences leave us scarred and fragmented but can also foster great resilience and a more intimate and different connection with the world around us. Deceptively delicate looking, the Birch tree’s deep roots, when properly nourished, also make nutrients accessible for many other species.

To create this piece, multiple layers of coloured pencils have been worked into watercolour paper and newspaper stories have been painstakingly remoulded, crumpled, softened, cut into strips and spun through the fingers into yarn. These techniques are slow, sometimes tedious and often painful, mirroring the process of recovery.

 

 

13 Reasons Why – too graphic or not graphic enough?

Probably some *spoilers* below. And obviously discussion about *suicide* below though I’ve tried to keep details to a minimum.

There are links here if you need immediate support: Helpful links

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This isn’t a review as such, but a response to the main controversy surrounding the show – the depiction of suicide. I don’t want to get too much into my thoughts on things like dialogue, characters etc. It’s not what people are talking about. Suffice to say I was kind of bored by the first few episodes but I’m fully aware I’m not the target demographic so that might be to be expected.

What felt right:
To me, the tying together of events, community and culture as triggers for one young girl’s overwhelming distress and ultimately her death was important. Too often we think of suicide happening to people who are ‘just’ ill.

This focus is important, especially now, as it broadens our view of where things are going wrong. Many people die by suicide, not because they are ill but because the systems around us are unjust and provide poor support.

It means we have to focus on our society and culture and the ways in which people are let down when vulnerable or systems that perpetuate injustice. By focusing our suicide prevention efforts psychiatric diagnoses, we are missing a massive set of factors – people who are let down, or worse abused and traumatised by the society and culture we have created. That is something we all need to think deeply about, especially coming up to a general election. How can we create a society where people are supported and cared for?

The scenes of sexual violence were hard to watch but they didn’t feel, to me, gratuitous or sanitised. The discussion around sexual violence felt like it was, on balance, a helpful one.

Especially the exploration of denial and eventual acceptance of what had occured by both survivors and those around them.

For these reasons I felt that the audience that may gain the most insight from this show may be the people around those experiencing crisis, rather than those in crisis.

Importantly it has been noted by others that trauma and emotional difficulties can stem from issues more subtle and yet unrelentingly painful than the obvious traumas in this story. That is true and worthy of a story of its own. The traumas in the story though are sadly very common – more common than people care to admit to themselves and yet so often kept secret for years, if not whole lifetimes.

The main bit:

The main reason I sat through the whole show was because of the biggest controversy – the graphic depiction of the suicide itself.

I knew there were guidelines around describing specifics about means, methods or places relating to suicides as this is thought to lead to further deaths being triggered. So I could see why there has been outcry over this scene.

On the other hand, I also knew some of the most “effective” (in an anecdotal sense) deterrents I’ve come across, include specific discussion around methods that go into excruciatingly painful detail about the effects on your body, the ways methods can go wrong and the long term complications you may be left with if an attempt fails. They discuss the agony and the limitations of methods in such graphic detail that the effect is the exact opposite of glamourising or sanitising the act and in fact can be a really helpful deterrent.

So I wanted to know where this show fit in.

The scene in question is triggering because it depicts an act graphically, but to me, there’s sense of relief and a clean ending of pain associated with it which is what makes it so triggering. There’s pain in the scene but it is temporary and doesn’t seem too difficult to bear and then it is over.

It was nowhere near as uncomfortable or painful to watch as the the rest of the difficult scenes in the show. That’s surely a red flag.

So it missed the mark on the use of specifics to deter.

Other helpful deterrents to suicide I’ve come across previously include the insight that what you might be searching for – an ending, to be heard, relief, are things you can’t actually experience or be aware of, if you go through with it.

You will not know how people react to your death or whether your pain will be validated or whether your suffering will trigger any change or repercussions for anyone who has wronged you.

In using the voice of someone who has died, and, even in some scenes, her visual presence, it felt to me like Hannah was able to experience all those things, witness the changes in her community, get some closure and feel heard. I know she’s clearly already dead from the beginning, but this is the effect the use of her presence throughout the show had on me.

So while I think there’s been some good discussion around trauma, bullying and mental health, the depiction of suicide itself was dealt with in a problematic, potentially harmful way in my opinion.

I think it could be really triggering for those who are already in crisis and is a huge missed opportunity to reach a wide audience.

The show neither holds back from mentioning specific methods (which makes it too graphic), but also fails to fully communicate the agony, limitations and lack of closure the act entails (making it not graphic enough). This leaves us with the worst of both worlds in terms of approaches to safely discussing suicide.

That’s my opinion anyway.

When it changed. Part 1.

I have long been fascinated and moved by the beauty and complexity of biology. All through school, I lapped up popular science books and TV documentaries like a starved cat confronted with a bowl of cream. I studied it at uni, I loved it so much I did a PhD. And once I had recovered from the PhD, I went back to loving it again.

For most of my life, the most emotional you would actually see me in public (most of the time) was when listening to science seminars – anything from quantum physics, molecules, natural history to astronomy. I’d get shivers down my spine and tears, actual tears of Awe.

Although I stopped wanting to do the routine science stuff that fits pieces into that picture, I have never stopped looking adoringly at it.

So when I’ve thought about my mental, psychological or emotional health in the past, I’ve very much focused on the biological explanations. I knew there were limitations, social aspects to consider, and that the brain is so complex we may never understand it fully. But it was always my focus. It felt comfortable, interesting and right.

I think this was only partly because of my love of science. I think it was also because it made it easier to keep the focus mainly on me. My response to events, my faulty thinking, my difficulties coping and my personal vulnerabilities. This focus made things easier to manage. It’s less messy to only deal with your own head and not to get stuck in the murky waters of politics, society and power structures too.

I alternated between feeling like the most accomplished Vulcan in the universe who was fully disconnected from emotions; and experiencing utterly uncontrollable overwhelming feelings that came from nowhere.

And at both ends of the spectrum, it felt like my brain was somehow not like other people’s. Either people didn’t get the hurricane in my head or they seemed so vulnerable and needy compared to my ability to not let things faze me. The disconnection was with myself but with everyone else too. All around, counsellors, psychologists and other people (especially other girls & women) seemed to speak a language I could understand but not speak.

They talked of ‘processing’, ‘needing to express’, ‘bottling up’ or pushing down’ feelings. They often wanted to talk about their feelings, even when there were no solutions to be gained or any new information to add by doing so. I always tried to listen when people needed me to, and hoped it helped, but I never fully understood what they were getting from it.

So a biochemical explanation felt so right intuitively to me. It’s exactly how everything felt. Like random wonky wrong chemistry.

And then something changed for me.

I read “The compassionate mind“, a book by Prof Paul Gilbert. It changed me by letting me start somewhere familiar. It started from what was a deceptively biological perspective – evolution.  We are born more vulnerable and stay more vulnerable longer than most other mammals. Then follows a no-nonsense explanation of how the human brain works because of this vulnerability. It creates a physiological need for safeness, bonding and compassion that is firmly and biochemically embedded in our bodies and our minds and is as vital for survival as food, shelter or water.

I should confess I balled my eyes out through the whole book. And I got through it faster than any book I’ve ever read before. I think my brain had been lulled into feeling like it was on comfortable ground and then it got smacked in its little brain-face with something earth-shatteringly different. And something it couldn’t find a defence against. Suddenly I didn’t have to understand the language of emotions to get it. I didn’t need touchy feely language or to connect with the spiritual or the intangible in order to get what everyone else what talking about.

Through this lens my past approaches to therapy suddenly became really obviously deficient. I had continued to avoid my emotions by talking and engaging with an illness. This had given me validation for my pain, access to support and a level of understanding from others, but one which didn’t necessarily require me, or anyone else having to stay present with my actual emotional needs. I talked about irrational thoughts and about symptoms and “doing something nice for myself”. I spent years trying to prop up my brain with drugs, challenging my inaccurate thoughts and trying to change my behaviours. It helped to some extent, but my brain hadn’t actually been experiencing anything physiologically different, despite all this. None of these things were interacting with that soothing, bonding, safeness and contentment system I’d been reading about.

I realised I needed an intervention that my brain would understand and experience at a biochemical and physiological level that was fine-tuned to the systems evolution had created. Ones created precisely to down-regulate the brain’s ‘things are going wrong” system. Pills thought to increase neurotransmitters throughout the brain (and body) or to reduce the activity of neurons, may help (and may even be life-saving) – but they did not, by themselves, give my brain anything new to work with.
This was the first step on a journey of change, recovery, compassion and indeed more biology. I will tell you more next time because, in keeping with my new more self-compassionate path, I think and I feel I’ve typed enough for one day.

Cheesey, baked food stuff for eating

As you know, I struggle with preparing food, despite what DWP would have you believe. Once in a while I summon the energy to make something isn’t a ready meal or random snacks. So here is my quick and simple meal idea that depending on how big the dish you use is, could feed you for a week.

Get an oven dish – a big deep one.

Boil a few cups of water

Pour water in the dish with some dried gluten free pasta (a layer on the bottom), just cover the pasta with water

Leave it to soak and have a little sit down

I get a load of frozen veg out – I love the grilled sliced frozen aubergine from waitrose/ocado but also works with just sliced carrots, sliced peppers, beans, frozen spinach or any or all combinations of the above.

I get some garlic oil out (olive oil that has had some garlic sitting in it)

I also use frozen pre-chopped chillies, chives, basil you can either buy this already chopped or you could also chop and bag up the stuff from fresh one day and keep in the freezer for cooking-days.

After a few minutes the pasta is a little bit softer. If there’s LOADs of water I pour most of it out. If there’s just a bit or I can’t be arsed I leave it.

Chuck into the oven dish: frozen veg as you desire, quorn mince or similar if you like and then empty a tin of chopped tomatoes/tomato passata, or something like that in along with  a goooood glug of garlic oil and frozen herbs.

Add some salt and pepper and if you have some, maybe a splash of balsamic vinegar or lemon juice.

Important bit: Throw in a bag of pre-grated cheese, or shove some sliced cheese on top to cover the food.

Put it in the oven at approx 180-200 degrees for about 25-35 mins. It will all be cooked, but you may want your cheese a bit toastier or your veg and tomatoes a bit minglier. Even if you can’t wait – you can grab a bit to eat and leave the rest in the oven a bit longer!

Eat and burn your mouth and hot cheese – or be good and wait till it’s cooled down a bit.

I have no idea if there is a good vegan cheese you could sub in that would taste good in here. There are lactofree cheeses and there also I find I am okay with full fat hard cheese.

You can keep it in the fridge for a few days or freeze portions or eat the whole lot in one go, but you may overdose on cheese.

Warning: there is annoying, hard washing up – I tend to leave my dish soaking in washing up liquidy water for about a week before attempting anything with it (some days I may replace the warm soapy water but it hangs around for quite some time before being clean again. But the benefit is you’ve made shed loads of food!

What is a label for?

Why not categorise mental health difficulties, as we do for many illnesses, to help us find solutions, interventions and drugs that might alleviate distress?

I find it slightly odd that I am writing this as for most of my life I have found labels both validating and comforting. It was the world telling me what I felt was real and not my fault – I could look at my label and feel like it wasn’t “just me” and that there were others in the same boat too. And then I realised that I felt excluded from groups with people I related to and with whom I felt a great deal in common, but I didn’t have the “right” label to feel a part of that group. I realised that there were therapies that really felt like they would help me, but I couldn’t access them, with the labels I had been given. I realised people I knew struggling with the same things all had very different labels despite their experiences and the things they found helpful being so similar. So I’ve been thinking and exploring why some people find their diagnostic labels helpful and some find them harmful.

The arguments used against the current diagnostic categorisation are many but here are a few: 

Firstly, there are issues with clinical trials as well as the fact that not everyone responds to even the best, most well-tested drugs for the most well-defined, well-understood conditions. On top of this uncertainty, many drugs are hard to get on and hard to get off in my experience (see some interesting medicine withdrawal discussions here). But these issues aren’t confined to mental health. 

There are issues around current psychiatric diagnoses that include overlapping symptoms, the reliability of the diagnoses and the validity of them. There is much written on this subject, but these issues are not only true in mental health. There are many similarly descriptive names for physical conditions and syndromes we struggle to diagnose, understand or treat well.

The existence of external causes is sometimes used as an argument against diagnostic categorisation. In general these causes don’t always mean we shouldn’t label the personal problem as well. We can label a broken leg and describe a fracture. If it’s been caused by someone drink-driving, we acknowledge this as the cause and as a society can attend to that, but we still call it a “broken leg”. We do not feel defined by this broken leg – and other people can see past that label. And that, for me, is where the key is. 

The label of the “broken leg” is a Small Label. It hangs off your leg. Professionals can easily see you as a Person with a Small label hanging off you to help orient them to the ways in which they might be able to help.

As an example in mental health, “Depression” can be experienced as a Small Label. Someone who has a temporary, isolated incidence of persistent low mood. They’ve got in a rut, they’ve started to spiral somewhat and they need support (chemical, psychological or social) to reconnect with their lives and their healthier coping mechanisms. This label seems fairly helpful. It’s tells us a bit about their current state of mind and the kinds of questions maybe to ask them and the sorts of things that might help. We can see the Person – the label is attached to their brain, but it’s relatively small.  The “social factors” we take into account, describe the wider context of that Person and help us to see how someone’s illness or injury is affected by other things going on in their lives or the sort of support they might have available.

It’s my opinion that people who are seen as People-with-Small-Labels, generally find labels helpful, because the label is providing information about what help they need and the label is enough to help them acquire that. 

Because the brain and the mind are the most complex and least understood of all the organs/processes of the body, and indeed one of the most complex systems in the known universe, constantly interacting with other incredibly complex minds to form an enormous network of incredible complexity,  I think some special rules must apply to this organ.  And because the brain is where meaning, identity and personality is made, a label that may be harmlessly applied to a pancreas or leg, has the potential to cause much more damage when applied here.

This won’t always be the case. And conversely, I’m also aware that for many people a chronic physical health label may also interfere with their sense of identity. In fact, I have noticed that my own experience of physical health services lately has involved a much deeper questioning of whether a label would be helpful or hindering to me as a person than I would have expected. So maybe this isn’t a discussion only relating to mental health. But let’s get back to mental health for a bit as I feel I have been immersed in that discussion a lot more than in physical health so will leave that to someone else.

Labels on brains can potentially interfere in meaning and identity-forming and in mental health services, there are a large number of people for whom these are the exact areas they struggle with and where they have deep vulnerabilities. This necessarily increases the chances of the label becoming a large part their identity and potentially being experienced as harmful long-term.  Not for all people, but for a significant number of people, such labels are experienced as Very Big Labels. And these begin to explain everything about a Person as they shrink behind it, becoming a Label that comes with a person. Everything about them is seen through the lens of the label (if you will forgive my mixed metaphors).

Many of these people therefore experience depression as a Very Big Label, particularly if complex, long term, recurring or not responsive to current treatment options and especially where there is a history of trauma or societal marginalisation. We can experience labels as Very Big when we are trying to use them to categorise really complex, deeply embedded difficulties, that are intertwined with our identities and personalities and that have developed over (often) our formative years. These labels are often an attempt to describe the effects of a lifetime of trauma and injustice that are not adequately addressed in our society. And they very often do not do them justice.  When a person’s difficulties are due to chronic trauma and injustice, to put a label on the person and not on the widespread social injustice they face, focuses the problem on the person. Of course that isn’t the intention – most health professionals just want to help us with our pain and difficulties, but the act of naming and labelling us based on the effects of these injustices helps focus attention and reinforces (unintentionally) that “this is where the problem that needs fixing is”.  It may not exclude attending to societal problems as such, but it does take up a lot of bandwidth.

This is not the same thing as taking “social factors” into account when we are looking at a Person-with-a-Small-Label. This is when our there’s not much of our identity or experience that won’t be fit onto the label.  And this labelling is mirrored in our language around “vulnerabilities”  and “protected characteristics” where instead of naming “racism”, “sexism”, “homophobia”, “economic inequality” as issues we take into account “ethnic background”, “gender” “sexual orientation” or “long-term unemployment”.  Instead of talking about rapists and abusers, we talk of “traumatised” or “battered” women and men. More labels for us as individuals and less labels for society to deal with.

Trying to boil down widespread and embedded difficulties with labels, makes it inherently harder to see the person as so much of their whole being is described on the label.  Of course, many professionals are skilled in working around this, but the Very Big Label can make it harder – not just for professionals, but even for ourselves and our social networks. It’s inherently easier to stereotype people with Very Big Labels that have been written based on their ingrained behaviours and personalities than labels based on a broken leg or a dysfunctional pancreas. Anyone with a leg can have a broken one and it doesn’t really trigger any unconscious bias, stereotype or prejudice in and of itself. The names of some labels also leave a lot to be desired and I am not sure how it was overlooked that labelling someone with a “personality disorder” might cause more stigma than their difficulties themselves do. It would seem to me this makes life even harder for ourselves and any anti-stigma work that is needed. When even naming of genes such as “sonic hedgehog” have been under fire in case they cause distress whilst explaining a genetic abnormality to a patient, how did it ever seem okay to tell someone they have a “personality disorder”?

I totally understand the need that professionals feel to classify in order to ease the process of finding ways to help us more effectively. And I totally understand that many people feel empowered and validated and helped by whatever label they have. However, what I’d like to get across is that for many people this is not the case and whatever your intentions are, however useful you may judge the words you write on the label to be, the effects may feel very different to the person being labelled. And that matters.

It matters to the person:

accessing effective support:
Professionals in mental health research and practice are highly intelligent, innovative, curious people, with great dedication. They typically have a great deal of expertise and resource, so I am utterly confident that if they applied these skills to finding new ways of combining all the complexity that is biology, psychology, and sociology that we might find ways to help these people for whom the act of diagnosis and labelling has been difficult, unhelpful and traumatising. Can we keep building more of an evidence base and flexible pathways for support that do not rely solely on diagnostic labels?

anti-stigma campaigns:
I feel we could focus more effort on ensuring society treats emotional distress with the same seriousness and responsiveness it does physical distress, regardless of the labels we use, or whether someone has chosen not to accept a formal diagnosis. Most anti-stigma campaigns are heavily reliant on diagnostic labels and I would like to see more discussion of severe difficulties experienced by people without necessarily relying on the diagnostic framework at all times.

welfare:
Many of our most traumatised survivors are forced not only to bend but split their identities around a confused and non joined-up welfare state. They must be labelled, even if they find it harmful or unhelpful to have a label to get vital and life-saving financial support.  But they must shake the label to grow and develop and “get better” in therapy. The current welfare state forces the people for whom growing up involved breaking themselves into different pieces acceptable to different people to keep doing the same, whilst at the same time asking them to recover, become whole, find meaning and become economically productive.

and it matters to the science of mental health itself:

Professionals and researchers may feel this makes life more difficult, but dissecting and addressing difficulties is a part of finding the best solutions. What’s the point of a system that is easier for professionals but causes harm to some patients? Usually the patients who have endured the most trauma and injustice. It is important to recognise that the act of diagnosis itself has an effect, and for a significant number of traumatised people, this can be a very negative effect. When we study a star system, the words we use have little effect on that which which we study. The stars don’t behave differently depending on how we describe them. When we study human beings, the words we use impact the subject.  What may seem like “just words to describe a cluster of problems” can become an inextricable part of the problem we are trying to objectively observe, study or address. When we start to change the nature of the problem through attempts to classify, we hit a scientific problem

Neurobiology & interdisciplinary research:

We are not closed biological systems and the most harmful and the most healing effects on our brain chemistry are other humans and they way they behave. There’s a lot of complexity around the causes of mental health problems that reaches far beyond the individual body/brain/mind and even social network, that is not often factored into the kinds of research we do or even the definitions of the problems we are trying to solve when we look at mental health research.   Given that the biology of our brains and the functioning of our minds, more so than the rest of us, is intimately interconnected with other brains (even when we are connecting with people thousands of miles away via technology) and given how much more complex our minds are than anything else we know of, a lot more focus on interdisciplinary research that can deal with complex systems with emergent properties, including mathematical modelling, might be extremely helpful. We can’t keep treating the brain as an organ like any other, when it isn’t even in the same planetary system (never mind ball park) in terms of complexity as any other organ.

Maybe if all this complexity could be addressed more consistently, then some of us can start to give back to society some of it’s Very Big Labels. There is strength in numbers and a whole society can bear the burden of these problems better than struggling individuals.