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?
*Ramblings and thoughts based on my own experience and those of people I know only.*
Denial about my mental health problems has helped me find work on many occasions but it also meant I approached work in a way that was unsustainable. Although I have interests and motivations, I haven’t been very clear about my focus and so followed a somewhat wandering career. I didn’t factor any time for recovering, self care, or make allowances for any of the difficulties I might face in the workplace. So of course I would eventually get overwhelmed and go on sick leave and resign. Job seeker’s allowance seemed the most denial-friendly way to cope with this until I could muster up some strength to find something, almost anything, that I could manage. And so the cycle began again. And again.
At some point you have got to accept that you have to do something differently to achieve a different result. In 2012, I did something I have always done, which was to seek support in a superficial way. I did CBT for spider phobia, which helped a little, but it soon became clear there was a lot more going on. Usually this would have been my cue to give up on therapy and hibernate till I could restart the cycle.
Time for something different….
I was lucky enough to be challenged and supported to try something different by a clinical psychologist. Compassion focused therapy and a blend of other approaches with enough time to develop a safe therapeutic relationship meant I could start doing therapy by actually experiencing my feelings in therapy and learning how to tolerate them. Exploring things by experiencing them rather than just talking about them. You just can’t think your way out of emotional problems. More about actual therapy another time but this was the reason I was able to accept that I had longstanding difficulties and so I decided for the first time, to apply for Employment and Support Allowance (ESA) instead of Job Seeker’s Allowance. I also applied for Personal Independence Payments (PIP) a non means-tested benefit for the extra costs of living with disability.
It’s actually very destabilising to have to make a case for sickness or disability benefits when you rely on denial to keep yourself going. But with support and luck it’s doable. Luckily for me I had no face to face assessments in the beginning which then meant I could take my next massive step in breaking the cycle: I stayed.
I found a flat by myself for the first time. I stuck around instead of running back home or to another city. I stayed where I was building up therapeutic and social relationships. Putting down roots.
Both benefits were a total godsend. I could afford a quiet little flat, where I felt relatively safe and create a little recovery nest for myself. As I found out more about how to manage my mental and physical problems, the money became indispensable. Trying out aids and equipment for physio exercises, taxis, emergency money for when I was in crisis, a cleaner so I didn’t get overwhelmed by the household stuff, ready meals, pre-prepared ingredients, mindfulness books, books about mental health, a self compassion course – you get the picture – there was a lot of “stuff” involved in helping me get better at managing stuff. I was thinking about work, leaving the flat a little bit more, looking at recovery services. It was exactly what PIP and ESA are supposed to be for. To help me live independently, to have a life that is a bit closer to what my life might look like if things were different with my circumstances and health.
This is where the story should end, or where it should carry on as you might hope it to anyway! Maybe I would find something sustainable in the world of paid work and no longer be reliant on ESA. Maybe I could use my experience to help others do the same. Maybe my physio and ability to get out and about with taxis may have lead to better physical health too.
Instead, I have been reassessed for PIP, and this time found to be not eligible for any of this disability benefit money.
The process of reassessment itself was severely destabilising again and increased my use of local NHS services and out of hours services over a period of months. The decision meant I also lost money from PIP but also from ESA. I can afford a lot less of the stuff that helps me cope, I feel worse and I am moved several steps back in my recovery. Not only that, this major change in my budget happened with a few weeks warning.
It isn’t rocket science – I was given a benefit designed to help me cope with life because of my disabilities. I learned to use this to help me and then it was taken away because it was helping me (one of the reasons my application was denied is because my clinic letters state that there’s been improvement in my management of my symptoms and conditions). Nevermind that this is a relative statement that requires some idea of what that improvement means compared to most healthy people. Even if I had improved enough to no longer be eligible for the benefit, there really needs to be an adjustment period before removal of all financial support.
The NHS picks up the tab for the backwards steps in recovery but not only that. The DWP ask you not to specifically request evidence from your health professionals. They also didn’t seem to request evidence themselves for my application, relying on the letters sent out as a matter of course. So to ensure future applications are more successful, do I need to take up health professionals’ precious time with documenting all my daily struggles as fully as possible, even though this isn’t an official activity that can be accounted for in time or money, or necessary to my care? Surely the health system has enough to be dealing with already?
When I read about what PIP was supposed to be for, I thought it seemed too good to be true but it sounded like me. It’s for people who can’t do certain tasks reliably, repeatedly and to a high enough standard most of the time. This includes if these tasks impact you more than a healthy person. In practice though, I felt my assessor thought the benefit was for someone who couldn’t cut a carrot on a single occasion, if she put one in front of them.
If they had said that this is who the benefit is for, I never would have applied!
Now it seems that ESA will get cut for those “who are ill but may be capable of work soon”. Because “work should pay”. Of course you shouldn’t lose out by starting work but I literally know noone who would not want to work because they were getting enough to cover their basic living expenses already. The reasons for unemployment are of course far more complex than “I can feed myself, therefore I won’t bother doing anything at all with my life”. And let’s not forget the many people that contribute huge amounts to society without being reimbursed for it (unpaid carers, stay-at-home mothers and fathers, volunteers). I believe that the fear of benefits being removed drives longer term worklessness more than the fact that your bills are (just) being covered. People get gradually more and more scared to take a leap of faith into the employment world, especially as the very system they rely on is repeatedly attacked and cut.
To borrow from the therapy that has been helping me – We have three main systems in the brain: threat, drive and soothing. The threat system is about fear, quick reactions, self preservation and leaves little time for reflection. Both the drive system and the soothing system can help alleviate problems with lots of threat system activity. The drive system is avoidance and busyness and the soothing system is about caring, compassion and contentment and generally much more reliable at reducing our focus on threats.
The more we attack people on benefits and reduce their financial and emotional resources for coping, the less soothed their nervous systems will be, and the less likely that they will be able to find sustainable solutions to their problems, feeding an endless cycle of poor health and worklessness. Short term solutions maybe, but much less likely sustainable enriching, creative, innovative or compassionate ones. There is a world of difference between working to survive, and working creatively to improve your life and others. What could these people contribute to society if we let them feel safe?
Isn’t the safety net of resources in better-off families advantageous to children’s outcomes? Not having to count every penny and owning a home gives us the opportunity to explore different options, take gap years, take extra training courses or take advantage of unpaid internships. Obviously there is such a thing as too much of a good thing, but I don’t think that the people who have the most difficulty in gaining and maintaining employment are in any danger of getting too much at the moment.
Billy Collins falls in love with a mouse, a seamstress, a bowl of broth and his soap among other things. We all fall in love on holiday, when we see new beautiful things. But our eyes are so used to our everyday surroundings, it takes effort to notice anything really. That’s okay, it would be extremely hard work to always have to consciously do everything. I wouldn’t know where to begin with walking, for example. And that’s super efficient and excellent, but it does mean the brain is set up to take a lot for granted. On top of that it gets a bit carried away with imagined problems or thinking about the past. Both useful things our brains do to keep us safe, help us achieve our goals and learn lessons but sometimes we struggle to pay much attention to the present moment because of this. And isn’t that kind of where life is?
The poem reminded me of a horrible day walking back from an appointment when exhausted and lost in anxious thoughts. I looked down at my boots and saw they were covered in cut grass. Suddenly I was brought into the present moment. I do like the smell of cut grass and something about the grass all over my boots made me smile. I think it made me feel the delight of getting messy as a kid.
Now obviously no amount of wet blades of grass ruining your boots is going to solve your problems, but it did make one of my many moments of life on planet earth pleasant, nay delightful even. There are plenty of mundane, boring and distressing moments so it’s good to add some weight to the right side of the scales. And the more you do it, and the more you notice it, the more your brain looks for and finds these (sometimes slightly ridiculous) little lovely things and the more lovely moments you have. And you don’t have to go anywhere special to find them. In fact I have found quite a few just sat on my sofa staring out the window.
So I thought I would make a list of ordinary things I have fallen in love with. Do add your loves in the comments or on twitter or instagram if you would like to share…. #fallinlovewithordinary
The purples, greens, black and white of magpie wings, spread wide against clear blue sky.