First published One in Four Spring 2011
We all think we know what recovery is and what it would look like, but do we? Seaneen Molloy explores
We are told that recovery from mental health difficulty is possible – probable, even. The people we are exhorted to admire, from Stephen Fry to Ruby Wax, are people who have recovered from mental illness. ‘Look!’ they seem to say (and by they I mean everybody; from the medical profession to mental health charities). ‘Their lives are great now! Yours can be too! You can recover!’
Recovery. It’s the buzzword. I believe recovery is possible, too. But what does recovery actually mean? That is a question I have been exploring in my own life.
Recovery isn’t just about symptoms
Almost five years ago, when I was first diagnosed with bipolar disorder, I remember the doctor giving me a reading list. It was filled with inspirational memoirs whose dust jackets were emblazoned with the smiling healthy faces of their authors. I understood that he was trying to encourage me. However, at that time, I simply could not conceive living a normal life ever again. It felt less like an incentive and more like “Look what you could have won!” My illness had devoured my life and everything in it, from the inside out.
When people spoke to me of recovery, I struggled to understand what they meant. I had heard of clinical recovery; getting rid of the symptoms of a particular mental illness. As some mental health difficulties such as bipolar disorder, depression and schizophrenia can be episodic and recurrent; the statistics can make for grim reading. When recovery is judged upon the clinical definition of freedom from symptoms, around 60% of people with schizophrenia had a medium-poor outlook. Bipolar disorder fares better, however, with 40% of people who have been hospitalised for mania experiencing another episode within two years. I had certainly expected too much from clinical treatment. I thought the second I took medication, I would be cured. Pop! All gone.
A journey not a destination
Social workers and mental health nurses expressed the idea of recovery differently. Throughout my time with them, the focus was on helping me do more with my life. Like charities such as Mind they espoused the Recovery Model (see box), which promotes the view that to recover from a period of mental illness one must step out of the sick role, to make goals and empower yourself to live a meaningful life. It is a journey, not a destination. Developed by mental health service users, this to me at the time smacked of “will to power”, and the idea that you could get better if you really wanted to. It still does sometimes. Such a mantra can be downright dangerous. There are people who are incredibly unwell, who relapse often, and who do not have a home or support. They cannot become well by wishing alone.
And what is a meaningful life and who judges? Meaning could be a 9-5 job and a home, or, it could be creative endeavours. Even the experience of mental health difficulty can be itself meaningful.
As far as the recovery model goes, I was lucky. Thanks to the support I did receive, I gained the things that the model proposes as core elements. While I claimed benefits, I had somewhere to live and enough to live on. I had supportive relationships in the form of my partner, family, friends, social worker and the mental health blogosphere. I had, by being involved with charities and with writing in some way a feeling of empowerment and of purpose. I learned ways to cope and I took medication. Hope- and my sense of self, damaged by the ravages of illness- took longer to find.
When I began treatment, I thought that thereafter I would be- if not cured- then at the very least able to live a life where I could forget I had a mental health difficulty. That hasn’t happened. Recovery, for me, has entailed focusing my efforts almost entirely upon the fact I do have a mental health difficulty and finding ways of getting on with it. This has its own challenges.
If the recovery model encourages patients to step out of the role of ‘being ill’, then what do they have to gain from constant awareness that they have an illness? Immersion in the identity of somebody with a mental health condition was a necessary part of my journey. I no longer define myself as ‘mad’ or ‘mentally ill’, but I can never get back to the person that I was before- she don’t exist anymore. That in itself was hard to accept. I had to change my lifestyle.
I started small. I bought a chalkboard and wrote five things a day I had to do, no matter what. Brush teeth. Wash my face. I took on an evening class.
It’s not a way of life I’m used to. I became unwell as a teenager, and I’m now in my mid-twenties. I’m now the world’s most boring person. I’ve discovered- through the admittedly risky process of trial and error- that maintaining some sort of sleeping schedule is the crux of managing my illness. If I sleep too much, I tend to become depressed, too little, and my mood escalates. My natural predisposition is towards wakefulness, so I take medication to sleep. One late night destabilises me, so I’m not a party animal. I tend to avoid alcohol when I can. I have to reduce stress in my life as much as possible because it makes me unwell. I know I can’t avoid stress completely, but my ways of dealing with it have to be, well, boring once again.
Not the same as when I began
Illness can linger in unexpected ways. In my case, my concentration seems to be permanently affected. I have not read an entire book in over four years. I’m currently studying and I need to record my lectures because I simply cannot focus long enough to take them in. I write with more difficulty, which saddens me greatly as it was one thing I found easy most of the time.
I am a much shyer, more reclusive person that I had believed myself to be. In some ways hypomania (an ‘up stage’ in bipolar depression where you feel full of energy, positivity and sociability) and depression took care of my socialising for me. Without those moods, or without them to the same degree of intensity, I find socialising difficult. My relationships were damaged in the process of my condition.
Now I find myself in the hinterlands of the mental health community. I don’t particularly align myself with the survivor network, but nor do I feel at home with those who are still experiencing the more severe aspects of mental illness. Nor am I someone who wants to dismiss or deny my mental health difficulties. I’m the one at the other table, nursing a diet coke, feeling unable to join in with either conversation.
I consider myself someone who has recovered from a mental health difficulty. I don’t mean that I no longer have one. I do. I still have some symptoms of a mood disorder, and I still have to manage living with one. These days, I can just do more with my life than I could when I was very unwell.
I’m currently job hunting and have applied to what feels like a thousand universities. In some ways I feel as though I have been asleep for half a decade. In others, I feel refreshed after my nap. So this is my recovery. However it’s defined.
What is recovery?
Recovery has two meanings in mental health. The first is clinical recovery, which is being free from any symptoms and being able to get on with life much as you did before you became unwell. While this happens for some people, it’s not a common experience for many people with mental health difficulties.
The second is personal recovery. This is finding a meaningful and satisfying life after a period of mental health difficulty, whether you are still experiencing symptoms or not. It was developed by people who had experienced mental health difficulty as an answer to the clinical recovery model.
Definitions of this form of recovery differ but most agree on the following four components:
• Finding and maintaining hope
• The re-establishment of a positive identity
• Finding meaning in life
• Taking responsibility for one’s life
This form of recovery is not about returning ‘back to normal’ after a period of being unwell, but finding new ways of being and living that take into the fact that your experiences might have changed you and how you feel about life.
The first and most important aspect of this form of recovery is hope. Without hope, nothing else works. The next is finding an identity for yourself that isn’t just as an ‘ill person’. This goes hand in hand with finding meaningful ways to use your time and taking responsibility for the things that happen to you in life and making decisions for yourself.
The whole idea behind this kind of recovery is that you should be aiming to have the best life you can have, defined by you not medical professionals or other people.
Personal recovery is not without its critics. Some see it as reducing the responsibility of services to provide help, support and treatment. Generally personal recovery is seen as a more realistic way of measuring your progress. It is seen as more positive than the more impersonal, and for many impossible to achieve, clinical recovery from mental health difficulty.