On labelling

I have recently been exploring how I feel about diagnostic labels used in mental health as a result of many things – including a really interesting event I attended called “compassionate approaches in mental health”.

The website is here for your perusal: http://compassionatementalhealth.co.uk/about. The day was full of laughs, tears and bonding.  I’d made quite a massive effort fighting fatigue and pain to get there but I did admit (into a microphone!) that there was still a part of me deep inside gagging at the idea of all this touchy-feely lovey-dovey stuff.

And I am glad I did go – not least to have met some very wonderful people and to learn more about an extremely promising model of care currently being piloted in the NHS- the Open Dialogue Approach. I will try to write more about that but there’s a link here for you: http://opendialogueapproach.co.uk/.

One of the speakers introduced us to this “Drop the Disorder?!” group  which really got me thinking more about the language of mental illness and disorder. Drop the disorder?! is described as “a discussion group around the debate in psychology concerning the biomedical model of distress.” As I’ve read around and listened to what people have told me, it struck me that a lot of what is described as “mental illness” is commonly experienced but extremely difficult emotional distress that is an entirely normal part of being a human being. Most people seem to cope with varying degrees of “fitting-into” the society we live in.

There are some people though who really struggle because of trauma, abuse, neglect, inadequate parenting, the effects of power structures, the way society is organised and yeah, possibly some biological propensity towards more intense distressing experiences or uncommon distressing experiences that the rest of society is not really set up to understand or support us with.

The reason I personally chased a formal diagnosis was partly because I always felt defective. But also because when you struggle to trust your feelings and thoughts, it’s so reassuring to have someone say “objectively, you are disordered or disabled” even though it is far from actually objective. Regardless, you feel seen and to some extent understood through the label, at least, you know for sure you need support and that things are difficult. Bizarrely for me, the mental health professionals I met recently on my recovery journey were much more progressive in their attitudes to mental health labels than I was, which meant I kept feeling like they were invalidating my experience and distress by normalising it, when they were in actual fact fully validating my experiences (just not in a way that felt familiar to me). I do have PTSD and depression diagnoses but I can now see that those words are fairly limited in the ways they can describe my actual difficulties day to day.

It felt like labels would bring me validation, understanding, a sense of shared experience with others like me, social care, health care, therapy, welfare support (in theory at least). But I was also starting to see how much overlap and subjectivity is involved in the categorisation of emotional distress. And perhaps also feeling a bit more confident in my ability to know what my experience is, without always needing the diagnosis to prove it for me. I started to understand that some people were deeply unhappy with, or even traumatised by, their labels – feeling them a burden or a straitjacket imposed on them by services. It’s a hugely complex area and I don’t know what the right answers are but I do know that currently, without a mental health diagnosis accessing the support you may need may prove to be made even more difficult than it already is for those sporting labels. And that made me wonder what an alternative system would look like.

How would we provide for those with more uncommon levels of distress, that prevent them from leading lives of meaning – distress that makes people end their own lives? How would we organise the welfare state to support them without the diagnostic labels that currently allow us access to therapies funded by the health service?

The diagnostic system which often provides much of the structure to mental health campaigns has been helpful in helping the general public understand that people who have been given these labels are suffering in a way that is as serious as a physical dysfunction, but it is felt by many that the language is limiting in ways that deny (or misdirect attention from) the true nature or extent of external stressors, injustice and trauma in our society.

But what does that alternative language look like, that will help us support those in the most distress? What campaigning-friendly words, ideas or concepts will best communicate to the public that this emotional distress can be as serious and as deadly as cancer without using the language of cancer and disease?