Guest blog by Debbie Cleaveley (Recovery College Trainer and Mental Health Nurse)
There’s no one more surprised to be a guest blogger than me as up until a couple of years ago, I thought that my career was over and that I was destined for a life of depression. I thought that it was how my life was meant to be and that I’d never get better. I’m not blogging for the sympathy vote but have chosen to tell you my story to show how mental health recovery can change lives.
For me, mental illness was my job. I chose to pursue a career in mental health nursing essentially because I was interested in people. I was always far more interested in the person behind the illness or disease and realised pretty quickly that mental health was the right place for me.
Once registered, I chose to work with people who were on the periphery of society- people who had treatment resistant psychosis. These people were the unloved, uncared for and unwanted. The people who had been in the old Victorian hospitals and then dispatched for care in a community that did not care. These were the voiceless and the forgotten.
Working alongside people who had been judged, marginalised, then forgotten, I thought that I understood stigma very well. I saw it on a day to day basis in the media and on the faces of some of the general public that I met at work. I preached to my users time and time again, that mental illness was nothing to be ashamed of, that society had no right to judge, banged on about how poorly and inaccurately people with mental health problems were portrayed in the media, I dutifully dished out anti stigma promotional goodies each World Mental Health Day.
I fought stigma. I understood it. Or so I thought.
And then, to my horror, it happened to me. Until it happened, I didn’t know the half of it
It’s difficult to convey the experience when the bottom falls out of your world without resorting to well worn clichés and stereotypes. The road to misery is paved with a million bad songs and poems. Even the language that we use has been hijacked by the mainstream so that depression becomes the feeling after a bad day at the office rather than a serious and profoundly disabling condition. And there is an irony in minimising mental illness labels and language because it doesn’t make it any easier to deal with, it doesn’t take away the sting, the agony, the obliteration of everything positive in your life and that horrible, bleak feeling of being utterly alone, hopeless and terrified that I experienced when it happened. In fact, it makes it worse because so few people understand, let alone accept what is happening to you.
If you experience a physical illness, you usually do not have to spend the first 5 minutes of any conversation explaining what it is- unless it is something particularly exotic or rare- and how you came to get it. You seldom get people remarking that you don’t look ill or that the causation is due to ‘that job that you do’. Feeling tired, lacklustre, crying and losing your temper are not seen as imminent warning signs of relapse. The majority of people will not squirm or blush when you tell them what is wrong with you and few loved ones wring their hands and embark on a journey of blame of what they may or may not have said or done to trigger off your illness- unless they have force fed you with industrial sized pork pies, fags, booze or similar… Sadly it is a very different story if you experience a mental illness.
Equally, just as working in casualty hardens you to the sight of blood and gore, working in mental health services insulates you from the true horror of mental illness and stigma. I learnt to observe abnormal thoughts and behaviour without question and for 37 and a half hours a week, was surrounded by others who saw the world in a very different way from me which made me become hardened to the strange and the bizarre. I accepted those I worked with for who they were- but by doing so, did not consider what it must be like to be saddled with a diagnostic label and a cast of health professionals controlling almost all aspects of life. I did not think about what it was like to take medication, to experience side effects and to live in a limbo land of not knowing what was normal human emotion and what was a symptom of illness.
I guess that what I’m trying to say is that for me, having a mental health problem was a big thing. Not just in terms of the actual signs and symptoms, although these are horrific enough, but in terms of how it rocks your sense of self, your place in the world and how others see and judge you. How it leaves you like a hollow shell feeling that life is over and that there is no future. When it hurts to breathe and even exist. Of these feelings, I was clueless and ill prepared, despite all of my professional training, skills and experience.
I’m not going to focus too much on the darker days. To be honest, it’s not a place that I like to revisit too often. However, I am going to focus upon the importance that recovery has in making sense of what happened to me.
Getting a diagnosis of a mental illness is life changing. Not necessarily in a wholly negative way, but it is impossible to pretend that I am the same person as I was before I got unwell. Stigma can be blatant and in your face, but my experience was more subtle and in some ways harder to cope with as there was always that margin of doubt – was it just me or were people really treating me differently?
It is bad enough when you become unwell, you can come up with a million different ways of blaming yourself or generally giving yourself a hard time, but when you find it difficult to even cope with the actual diagnosis, it feels even worse. I spent hours ruminating over the prospect of taking the very same medications that I’d doled out to countless users over the years and struggling with the sense that I ‘should’ be able to cope.
However you view a diagnosis, the fact remains that I, in common with many others, felt acute feelings of shame, inadequacy and failure. I viewed it as a fight against an enemy within. I also felt the symptoms and stigma permeated all aspects of my being, that the diagnosis of depression overwrote everything and anything that I’d ever achieved. I found myself defined by an illness that overshadowed my life- sometimes it was an overwhelming shadow, at other times a dim but nevertheless ever present figure. When the shadows lifted, I lived in terror of them returning and every time I had a bad day, thought that it was all coming back again. Each time it returned, it was more stubborn to treat, each time the despair got worse, each time that growing horror that maybe this was how my life was meant to be.
Viewing the illness as an enemy meant donning the mantle of a superhero. I wanted to be invincible, wanted to be able to rescue the rest of the world in the hope that it would prove to me that I was not defined by my own depression. All that led to was setting myself ridiculously high and unachievable standards which I had no hope of reaching and then giving myself a good kicking each time I failed.
Every situation reaches a tipping point of change and mine was a conversation with Rachel Perkins OBE. Talking to someone who truly understood what it was like and had been there too was a breath of fresh air. Up until that point I’d avoided any form of support or help beyond the care of my ever patient and fantastic GP. I viewed support as a negative thing, the admission of a weakness or vulnerability. I’d made myself determined not to become what I believed to be a victim and instead set myself as an island where only I could mend me. For the first time, I began to see that there was a likelihood that I could live the life that I wanted.
I’d like to say that it was plain sailing from then on but it wasn’t. Although I became a recovery trainer and found a way of telling my story, I still was not comfortable with my illness and it continued to dominate and terrify me in equal measures. I became much more open about my illness although that was borne out of necessity rather than by choice as by then I’d had two breakdowns and was unable to hide the depression any longer. I’d also had some less than helpful episodes with a couple of former line managers and it seemed pointless to pretend that nothing had happened to me.
I resisted referral to secondary services from a fear of becoming embroiled in the system. I didn’t want a risk assessment or a care plan; I wanted to be me again. Medication was an issue as I hated taking the drugs and reduced the dose or stopped taking them altogether frequently.
I guess that some would see this as me being ‘non compliant’ with treatment or indeed reluctant to ‘engage’ with services.
Being referred to secondary services was a decision that I made jointly with my GP. It was at the time a very painful decision but ultimately it was the right one for me. My experience of mental health services have been brilliant and the care and support that I have received from my team has been, quite literally, life saving and life changing. Having the support of both my GP and Psychiatrist, both of whom listened without judgement and cared about me, along with CBT from a psychologist who again sought to understand me as a person and not a collection of symptoms were pivotal in my recovery.
However, receiving services is only part of the story, albeit a very important one for me. There is no wonder drug to get rid of shame and stigma. Ultimately, recovery is looking beyond eradication of symptoms and cure, it’s a journey of acceptance, self discovery, and moving forward. Whilst mental health services acted as my sat nav by guiding and supporting me, only I could actually undertake the journey. Starting out is not linear nor is it easy. For me it involved getting lost, going around in circles, taking the wrong route, hitting queues and roadworks as well as the odd dead end. I’m still on that journey but know that I will reach the destination that I seek eventually.
The journey has taken me to places I didn’t think I’d go to and shown me opportunities and possibilities. It has helped me to learn about who I am, learn to believe in myself and realise that depression is a small part of me rather than a defining or dominant feature. I now treat it as an annoyance that I can control most of the time, and when I can’t, there are the professionals there to help me. I now accept medication as a lesser of two evils and feel self worth and purpose again. I’ve recognised my own resilience and the value of friends, family and my dog in keeping well. I can hold my head up high once more and hey, I like being me these days.
The recovery approach is not rocket science. In many ways it’s about putting basic respect and humanity back into mental health services and looking at each user of services as a person rather than a display case of symptoms. It’s about moving away from telling people what they can’t do and giving individuals’ permission to live their lives and make the most of what they’ve got. It’s not about professionals losing the expert mantle but recognising the expertise of people who seek our help and perhaps accepting that we don’t always have all the answers to life.
Working as a trainer at the recovery college has given me a unique and enriching opportunity to work with individuals in a completely different way. I certainly don’t claim to have the answers to everything but truly believe that by instilling hope, control and opportunity in to everything that we do, by valuing and listening and by introducing the notion that mental illness does not have to be the be all and end all of life then we can help others to realise a vision of life above and beyond MH services. Knowledge is power and one of the ways we can empower others is to share that wealth of untapped knowledge that has been accumulated by those who use mental health services. The college has given me the opportunity to do just that and work along side some truly amazing and inspirational people.
The development of recovery colleges and establishing recovery focused thinking into everyday practice are welcome and bold steps but there is a long way to go and we must not rest on our laurels. We need to challenge the prejudices and low expectations of users that lurk within professionals. We need to change the way we work to suit those we serve and if we want to have individuals with lived experience throughout our workforce, we need to kick down the barriers that currently exist, especially the policies and procedures for sickness that so often feel punitive rather than protective. We need to realign our positions of power and listen and support without judgement or prejudice.
My final thought is that recovery is very much like Strictly Come Dancing, the one difference being that we don’t vote out people on a weekly basis. Recovery can introduce the possibility of daring to dream. It can show individuals the dance steps and encourage them to take those steps, but cannot do the dance for them. The panel of judges are prejudice, fear and ignorance but they can be proved wrong if challenged proactively. At the beginning, as service providers, we may need to be the professional dancer, we may need to show the steps time and time again, we may need to provide the possibilities of hope, opportunity and control which is like the music and sequins. We may need to be the lead or guide at the beginning. We may need to help people up when the steps go wrong and they fall over.
With time, we need to step back and allow that person to grow in confidence and find their own rhythm. We need to accept that we will not always be needed as a dancing partner. We need to accept that everyone’s dance will be unique and may involve music and moves that we may not choose for ourselves. That not everyone will reach the standards of performance that we’d like but that the act of learning and growing is as positive and as fun and fulfilling as making it to the very top. That we are not all going to have our 5 minutes of fame fox trotting around the Blackpool Tower ballroom but there’s far more to our lives than that and that self confidence, self respect and being satisfied and happy with our lot is just as important. I’ve certainly accepted that I’m probably more of the John Sergeant & Ann Widdecombe school of dancing – but hey, I’m at peace with that.