Back to Peter Lehmann PublishingLecture from the 10th Triptych Congress, Roermond (Netherlands), November 14, 2002. German translation
Two Sides of Recovery
In my perspective and that of many other mental health care users recovery is not about cure. For many of us the psychiatric system isn't about cure. I think we should let go of that illusion. It keeps us passive. It keeps us waiting for something professionals or medication should bring about. Instead we should start seeing psychiatry as just one of the means on our road to recovery and start using it that way. How should we understand recovery? I want to go back to my experiences with psychosis and as a psychiatric patient to give you a first impression. I want to give some examples of how we make room for our suffering and our identity as a psychiatric patient without loosing our sense of self.
An ever-present factor in my recovery is the need to regain my strength. After a psychotic period I do not feel strong enough to build on myself. It takes time to regain strength once you have experienced how unlivable life can be beyond certain borders. Once you know these borders, little can ever be taken for granted again. You are confronted with an overpowering vulnerability that must be surmounted. You have to test yourself again. The world and all it contains must be rediscovered. Yet you have been drained of self-confidence, which makes it a hazardous journey. A right balance must be found between when to act and when to leave well enough alone, between protecting your self from the dynamics of life and participating in life.
You must learn which things can be taken for granted again. You must regain the 'normalcy' of everyday life. That is a matter of time, of adding every day without calamities to the previous one. And when things have gone well for a while, you may tentatively relax and think that perhaps the worst is over.
For a very long time, my reaction to a lack of strength and self-confidence was to cling without questioning to the course adopted by those who had treated me. It was as though they were looking over my shoulder and commenting on everything I did in terms of their model of treatment: 'Take care not to be too reclusive or on your own', 'Remain concrete and concentrate on the here and now', and 'Be awake during the day, you can sleep at night'. I saw myself through their eyes and applied their methods. I was unyielding for fear of a relapse if I deviated from the prescribed path. Maybe this was necessary for a while, but in the end it kept me in my role of psychiatric patient. I attributed much of what is part of life to my illness. Recovery means to me that I learned to distinguish between life's normal irritations and issues that warrant real concern. Recovery means that at a certain moment you have to 'de-psychiatrize'. You have to learn not to attribute all set backs to that so-called disorder inside you, but to life itself. You must accept life and take responsibility for it. It takes a long time before you dare lead your own life again, before you trust your own judgement again. Regaining strength and self-confidence demands endless patience.
A further facet of recovery is that you try to grasp what has happened to you. I think that my recovery began the moment I dared look back on my life and talk about my psychotic experiences. Until then, there had been only one official story. For a long time, there has only been one version of my life story. According to this version, I had a psychiatric disorder that had landed me in an institution. I had received treatment there and although I was never entirely 'cured' I was able to live with the remnants. This is not my story. I do not believe in it and it is of no use to me.
My own version is different. In my version I am not the carrier of a psychiatric disorder. In my story my admission to hospital was the result of a complex interaction of factors. One of the factors is my vulnerability for psychosis and another is about the physical abuse and violence I was a victim of. My madness was undoubtedly also a reaction to these unhealthy circumstances. Why was I never asked about my circumstances? Why did no one ever ask: 'What was it that drove you mad?' Such obvious questions are not usually asked in psychiatry. In psychiatry it is all-important to establish a diagnosis. And once this diagnosis is found, it automatically provides answers to all questions. From that moment on, everything you say and do is regarded as a logical manifestation of the diagnosed disorder.
An essential part of recovery is to look back at what has happened to you, to make your own story about it and to develop a new identity. In fact, you rewrite your history to make it your own story. You claim right of ownership over your own experiences. What is important is that you, and no one else, give meaning to what has happened.
Recovery does not mean that everything will turn out all right. Some things never will and you must learn to live with that. In the literature, these are called handicaps. If you can identify them you can make allowances for yourself. It saves you a lot of misery. And it saves your energy for what you can do. This will build your self-confidence. This is what could be called the principle of increasing recovery.
Recovery does not mean that everything will get better. It is vital to face and accept this. I must look back on periods in my life when my behaviour was odd - to put it mildly. Though I would like to see it different, that was me and no one else. There is also the stigma which goes hand in hand with having a mental disorder. And the anger about the injustice of this stigma. My anger at my stigma, while others get off scot-free - even have the right to point out my stigma to me - still sometimes clouds my view on my own life. No, some things never get better. And this is a painful conclusion, particularly once you dare compare your life with that of other people. In doing so, you realize how different yours might have been. From this comparison you are able to deduce what you have missed. And this is accompanied by the inevitable anger at all those things for which it is too late to correct. You may even hate all those seemingly happy people leading their apparently easy lives. This is deceptive, because things are never as they seem. Losing yourself in these emotions is a dead-end street. It is important to be proud of what you have achieved so far. What I mean is, that you can compare using different criteria. You can switch from one frame of reference to another.
I not only have to recover from mental problems. I also have to cope with having been a patient in a psychiatric hospital. This is a place where new traumas are likely to be experienced, and where even more abuse may be undergone or witnessed. My stay there damaged me in several ways, however unintentional that may have been. If I look back at how undignified it was to be a psychiatric patient, the self-respect for which I fought through the years feels shaky. If I remember the humiliation inherent to being a patient, I feel so angry that I am liable to forget my resolution that it will never happen again.
However you look at it, mental institutions are reservoirs of human suffering. Other people's misery you see there is added to your own. This, to me, is one of the contradictions of psychiatry: we herd together people who are suffering and then expect them to feel better. Even someone who is relatively stable will be affected by the hectic and ever-changing tensions of an admission ward. So how can a person suffering from psychosis, at such a place with all these tensions, ever return from his or her psychosis?
Recovery is not only about mental problems but also about the consequences. You must also get out of the habit of the typical life of an institution, to which you become accustomed more quickly than you can get rid of it. Then there is the stigma attached to being a psychiatric patient, which is very real if you yourself start to believe in it. Or the marginal position society assigns to ex-patients. Or their meagre financial position. Or job discrimination ... Psychiatric institutionalization deeply affects a person's life and its consequences will, in some form, continue to be tangible for so long that it will never really belong to the past. It is important to face this.
I have come to the end of my fifteen minutes. I gave you an impression of what recovery is about. The concept of recovery is a powerful one. It inspires us to tell our stories, to write them down and publish them. This story-telling gives us the opportunity to overcome our patient-identity without ignoring its reality. Recovery is a concept that allows us to develop expertise by experience. Collectively, in the user movement, it raises our consciousness. We claim the authorship on our own subjectivity. Our attention moves from mental illness, symptoms and passivity to recovery, possibilities and directing our own lives. We no longer just respond to what mental health care professionals offer us, but we also take the initiative in the area of recovery, empowerment and expertise by experience.
To me, talking about and working on recovery with others is a political matter. I believe that mental health care users can help and support each other in their recovery to a far greater extent than is currently the case. Only learning from each others knowledge, gained from our own experiences over so many years, will enable us to make stories in which we can recognise ourselves. Stories from which we can say: 'that is how it is, this is who I am, that is of help to me.' Our stories are not only of value to us. They also offer the possibility for professionals to learn to speak in a new language. A language that both users and professionals understand.
Wilma Boevink, born 1963, social scientist on psychiatric care, an active member of the Dutch usermovement in psychiatry. Being a longterm user herself now working in Utrecht at the Trimbos-Institute (the Dutch Institute for Mental Health and Addiction). She works in the research department, integrating her personal experiences in her work. Author (together with José van Beuzekom, Erna Gaal et al.) of "Samen werken aan herstel. Van ervaringen delen naar kennis overdragen" ("Working Together on Recovery: from Sharing Experiences to Implementing Knowledge"), Utrecht: Trimbos-Institute 2002.; Contributor to "Coming off Psychiatric Drugs: Successful Withdrawal from Neuroleptics, Antidepressants, Lithium, Carbamazepine and Tranquilizers", Berlin / Eugene / Shrewsbury: Peter Lehmann Publishing 2004. E-book in 2018. More about Wilma Boevink