LIFE AFTER PSYCHIATRY
Wilma A. Boevink
Netherlands Institute of Mental Health and Addiction
Department of Care and Rehabilitation
P.O. Box 752
3500 AS Utrecht
“Every picture has its shadows
and it has some source of light.
Blindness, blindness and sight.”
The work of Pat Deegan opened my eyes to the process of my own recovery. She described the concept ‘recovery’ and gave it wider recognition. Similar to other women closer to me, she shared her wisdom with me.
This presentation is given at the S.H.A.V.E. conference in Wales on August 30, 31 1996 on self‑harm abuse and the voice‑hearing experience.
The themes of this conference are by no means cheerful. In fact, it is in a sense morbid that we spend two days talking about abuse, self‑harm and voice hearing. But it is good that you are prepared to do so, as so many users of psychiatric facilities have to cope each day with the consequences of abuse. In fact, researchers estimate that 50 to 75% of psychiatric clients are abuse victims (Ensink, 1992, 1994). You, as providers of care, are therefore very likely to be confronted with these clients.
My own story is about recovery rather than abuse. My presentation focuses on how people recover from the consequences of abuse, and I should like to take this opportunity to illustrate the process of recovery among psychiatric clients. I want to talk to you about life after psychiatry, based on my own experiences following a number of years in a psychiatric hospital. Though these experiences are personal, they are not unique. You can find them described in the scarce literature on the subject as well as in what has been said and written by my fellow‑survivors (Deegan, 1988, 1993; Strauss, 1985, 1994; Van Weeghel, 1995).
From object to subject
Psychiatry is not always able to see its clients as they really are: as people with a past, a present, and with hope for the future. Psychiatry is a medical science: it deals with the pathology of the individual. It is not really concerned with the contexts in which mental problems develop. Consequently, on entering the psychiatric institution people are reduced to carriers of a mental illness, or they are even seen as the illness itself. In order to classify the disorder, their behaviour as well as their stories are analysed for symptoms (Antonovsky, 1987; Mooij, 1988; Thomas, 1995). Only what is significant to the diagnostic examination is seen and heard. Clients are examined but not really seen; they are listened to but not heard. Psychiatry does not regard its clients as serious discussion partners: after all, with a disorder you cannot speak.
Clients’ stories are not heard in psychiatry. This is unfortunate, as clients’ stories could teach us a lot. They would tell us about their lives, troubles, and their recovery, about what helped and about the battles they engaged in (Van Weeghel, 1995). Clients’ stories are about how they survive, and how they pick up the pieces. What do they do to promote recovery from their mental problems and their consequences? How do clients survive, recover and resume their lives after being labelled mentally ill?
How should we go about understanding recovery? This is a difficult question to answer. My own recovery began somewhere in the last ten years. In saying this, a number of concrete examples immediately spring to mind. Yet 'recovery' is hard to describe in just a few words. The dictionary defines ‘recovery’ as ‘cure’ but I disagree. ‘Cure’ sounds too passive, as if it's something a physician brings about, or you take pills for. No‑one can do your recovering for you, and there are no medicines which will do it for you. Recovery is something you have to do on your own. And it is a continuous process: it is not an end in itself, nor is there an absolute finishing point. Recovery is an attitude, a way in which you look at life and what happens to you (Deegan, 1993).
An ever‑present factor in my recovery during the last few years has been the need to regain my strength. On being discharged from the institution, I did 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 which 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 now be found between when to act and when to leave well enough alone, between protecting yourself from the dynamics of life and participating in life.
The recuperation phase is precarious. It is not without reason that most readmissions take place in the period shortly after discharge (Van den Hout, 1985). Inadequate resilience is partly, but by no means entirely, responsible. There's also a transition to be made from being a psychiatric patient to full‑time citizenship. You must resume daily life. Psychiatry doesn't teach you how to do these things. Psychiatric treatment does not show a person how to arrange finances, find accommodation or turn it into a home. Forms have to be filled out, visits have to be made to the social services or housing corporations and job medical assessments are needed. These are daunting tasks for anyone and all which require plenty of resilience. Rules and procedures are complex, waiting is endless and people are unfriendly. And even if you have not been recently discharged from an institution, this is all very unpleasant.
You must learn to take things for granted again. You must regain the 'normalcy' of everyday life. That, too, 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 I was afraid of a repetition of what had preceded my psychiatric admission. This should not be confused with fear of my own madness, which is different. My madness was simply the final stage of years of gradual deterioration and, in some ways, constituted a relief in the form of a refuge. I watched myself slowly but surely lag behind my peers. I felt life slipping through my fingers. This is still one of my nightmares, that I am gradually being side‑tracked away from everyone. I dream that first my own track runs parallel to the main road where all the others are, so things still appear OK. Only I know that there’s already no going back anymore and that what happens is irreversible. And then suddenly, everyone else veers off in another direction and I am left all alone.
Following my discharge, 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. Perhaps you see no harm in it, but it kept me in my role of psychiatric patient. I attributed much of what is part of life to my illness.
Now I know better. For example, I discovered that insomnia need not automatically mean a point of no return. I now know that everyone has bad days on which nothing seems to go right and the whole world seems to be against you. That's alright, tomorrow is another day. But then, those days alarmed me, because I thought they heralded a relapse. I learnt to distinguish between life’s normal irritations and issues that warrant real concern. Recovery means that 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. I am now ten years further on and I have discovered that 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. 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 which 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 own 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. My story tells you that I am also the victim of irrational aggression and violence. 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.
Victims of abuse will not, therefore, receive recognition as such from psychiatry ‑ if that's what they seek at all. Many of them entertain huge guilt complexes and are convinced they are to blame for the crime of which they, in fact, are the victim. They search in numerous ways for confirmation of their guilt and wickedness. They punish themselves in a multitude of ways. In becoming a psychiatric patient victims of abuse are supported in their belief that they are ‘bad’. As psychiatric patients they, in fact, keep alive the patterns with which they are so familiar. They so succeed in prolonging their victim role. Being a psychiatric patient could essentially be called a form of self‑harm.
An essential part of recovery is to look back at what has happened to you and to make your own story about it. In fact, you rewrite your history such that it suits you. 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.
Ups and downs
It is no easy task to look back at what has happened to you. It is important, however, to determine for yourself what led to your admission into a psychiatric institution (Deegan, 1993). This is the only way to come to terms with your life. This process of understanding your life history takes time and will have its ups and downs. It is not a story of success with an ending like 'and she lived happily ever after'. It is essential to realize that the process of recovery is not one upward line. There are numerous lines along which recovery develops. The only thing they have in common is that not a single line leads straight upward. It is important to learn why this is so.
In the first years following my discharge, I experienced periods of apathy. I stayed in bed all day: I did nothing and wanted nothing. It felt as though I were trapped by something over which I had no control and I felt powerless and desperate. I now know that those periods served a purpose: they were the only way in which I was able to recuperate and to regain strength when things got on top of me, when life went to fast for me. I gradually learned that apathy can serve as a survival mechanism and that I would get moving again when I was ready for it. I was later to learn how to avoid such circumstances. I learnt to intervene earlier, thus limiting the damage. And I am now learning how to determine for myself the rate at which I live, instead of feeling as if I am 'being lived'. But I expect I am not very different from all of you in this respect.
Let me give you another example of a recovery line which does not rise smoothly. There were times when I felt thoroughly trapped inside myself. The world and all the people in it only seemed to threaten me, which made me very suspicious. Noise inside my head and a dazed vision completed my isolation. I would withdraw from the world and would not speak to anyone for days. This isolation seemed to come up suddenly and seemed endless. Now I know that I choose to be alone when I seem to be loosing myself. It's hard to be sociable when you lose track.
I also look back on occasions when everything became too much. You could see this as a return of the symptoms, as a sort of relapse. Seeing it this way does not help you very much, however. Yet, I try to see those dark periods not as a relapse, but as a breakthrough. Apparently changes are taking place and I must conquer old fears and tread new paths (Deegan, 1993). I have resigned myself to the fact that in my life these developments will always be accompanied by a great struggle. This doesn't change the fact that a crisis is a crisis, but it helps if you understand what its meaning is, and what purpose it serves.
The principle of increasing recovery
Recovery does not mean that everything will turn out alright. Some things never will and you must learn to live with that. In the literature, these are called handicaps, but I prefer to call them vulnerabilities. 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 (Henkelman, 1995).
I have accepted that occasionally crises occur in life. I have accepted that occasionally crises occur in my life. This does not mean that I allow them to get the upper hand. I try to limit the damage as far as I can. I try, for example, to take things easy for the duration of the crisis. As long as you feel vulnerable, you must be careful not to undertake too much. I may also arrange a sort of action protocol with my care provider for when I can't decide for myself as to whether I shall take medication or not. Should I be admitted, and if not, what should be done instead? I also try to limit the consequences of self‑harm. There still are times when this seems the only solution. There are times when there is no other way to survive. By acknowledging this I am able to anticipate it, however difficult this may be. In this way, I ensure that I do not spend all my time only picking up the pieces after each crisis. It leaves time for living as well.
Some things do not turn out alright
Recovery does not mean that everything will get better. It is vital to face and accept this. I must look back on a time 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 been a psychiatric patient. 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. Many people have to cope with permanent physical and mental damage as a result of abuse, very often dealing with the effects of self‑harm as well. Although recovery means licking your wounds, some scars will remain visible for ever. 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.
There were times when I was fixated on all those ‘normal’ people who had a good education, a job, a relationship, a house, even children. In comparing my situation with 'where I had wanted to be' I always came off worse; I felt a failure, a fool, and not worth living for. But fortunately there were also moments at which I looked back at ‘where I had come from’ and I would feel proud knowing that at least I had got out of the mental institution. I'd come through so far. It is very important whether you compare your actual situation with ‘where you had wanted to be’ or with ‘where you come from'.
And in the end you may even get as far as realizing what you have gained from the course of your life, and that your experiences may provide you with something from which others can benefit.
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 (Deegan, 1993).
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. And yet my experiences are relatively mild compared to those of many others.
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? (see also Mosher, 1975).
The first experiences with psychiatry among persons who probably will have to deal with it for a long time are usually more negative than positive. The literature stresses the importance of compliance: it is essential for the success of the treatment that the patient does what the doctor says. But how can compliance be expected from people whose memories of their first psychosis are dominated by the constraint and violence of the admission?
Compliance usually refers to the prescribed medication, but how can people injected with prophylactic drugs on admission be expected not to despise psychiatric medication?
As a researcher I worked in a psychiatric hospital where there was no form of authoritative supervision of the practising psychiatrists. Over the years they had developed the habit of working weekend shifts from home, from their back garden. Any person admitted in the weekend would automatically be sedated without being seen by a doctor. It often took days before the heavy sedation and all its side‑effects wore off and specially prescribed medication was administered. Try to imagine the consequences of this form of introduction to psychiatry. I believe that many people have had to pay a high price for the indifference of the responsible psychiatrists.
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. Those of you who have read Goffman’s Asylums (1961) will understand what I mean.
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‑psychiatric patients. Or their meagre financial position. Or job discrimination ... (see also Deegan, 1993). 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.
Stories of recovery are of great importance to clients themselves, as it is they who must carry out the recovery work themselves. Those who are aware of this, have made a start on their own recovery. I would like especially to see them share their experiences with people in the same situation who are further on the way to recovery and who may serve as a role model. It may be mostly thanks to these people that I am able to tell my own story of recovery.
To me, recovery is inextricably bound up with emancipation and empowerment, areas in which a great deal is still to be done. I believe that clients can help and support each other in their recovery to a far greater extent than is currently the case. Much can be learnt from the knowledge based on experience that clients have gained over the years. Clients still expect too much from professional caregivers, who cannot do their recovery work for them. Only if clients themselves see it this way, they can make a start on their recovery.
Professional caregivers and recovery
Recovering is what your clients themselves must do. You cannot do that for them. Stories of recovery are clients' stories. Only they can make them. It is important that you leave it this way. And still you, as a care provider, must have detailed knowledge. You can do a great deal to improve your clients' process of recovery (see also: Deegan, 1988; Van Weeghel, 1995).
In order to point out to your clients ways of recovery, it is vital that you're not only familiar with their past and their hopes for the future, but also with their ordinary personal circumstances. Their lives do not consist only of the times you receive them in your consultation room. Recovery takes place outside it.
It is important that you do not take away your clients' hope of recovery. After all, there is no way you can be sure either about what course their lives will take. These days even what is called schizophrenia is no longer necessarily thought to be a chronic condition characterized by an inevitable decline. People with serious mental problems constitute a heterogenous group with very diverse histories (see Van Weeghel, 1995). It is important that you keep this in mind when dealing with your clients, so that you see them for who they are and can truly hear their stories.
Do not take away your clients' hope of better times. Of course you must be realistic, but do not force your clients back into total invalidity. They deserve a more nuanced approach. Realism is not the same as preaching doom and gloom.
It is important that you realize that stories of recovery are not automatically stories of success. Although recovery is synonymous with growth and development it does not automatically lead to visible progression and improvement. Crises may still occur, or periods of apparent apathy. During these periods it is important that there is someone to help find the meaning of it all. Especially when clients no longer believe in their recovery, it is important that you do and give them back their hope.
Improvement in one area does not automatically mean that things will go well in other areas. It makes all the difference if you keep this in mind. Processes of recovery are not all one steady and upward line, but are also subject to temporary setbacks. Allow your clients these lesser periods. They will need to use such occasions to take stock and consolidate what they have achieved. Do not continually chase progression. No‑one has the stamina to do so.
Do not stick rigidly to the so‑called treatment relationship, but try to establish a relationship of cooperation. A shared, and common, understanding is very important. It is important that there is a common understanding of what is going on. And 'common' does not mean that the client may always share in the understanding of the professional. The process of 'helping to find the meaning of what is happening' can easily change into ‘knowing things better’, particularly when you have little time anyway and your case load is really too great. ‘Common’ actually implies mutual give and take.
Essentially, recovery is about daily life ‑ something all of us here today have in common. Here, for me, lies the strength of the concept. It provides users of psychiatric facilities with an instrument to ‘de‑psychiatrize’ themselves. It allows them to view what happens to them as something that is part of life as well. I see recovery as being inextricably bound up with clients’ emancipation and empowerment. You as proffesionals can make a valuable contribution by dealing with clients as equal and valuable discussion partners.
Life after psychiatry
I have come to the end of my story. Some weeks ago, I told Ron Coleman, by phone, the title of my presentation, which is ‘Life after psychiatry’. He asked whether I wanted a question mark: Is there life after psychiatry? I answered it did not need a question mark. As far as I am concerned, it is no longer a question: it's a conclusion. I have now experienced that there is life after psychiatry. Yes, partly thanks to the help of professional caregivers. But also despite psychiatry. And on this latter point I hope a dialogue may be initiated.
I realize that for many people the issue whether there is life after or outside psychiatry is still a question. You, too, perhaps are wondering to what extent my story is that of your clients. Perhaps you feel that the hope of recovery is too optimistic for some of them. I would dare dispute this. I believe that principles of recovery are universally applicable. It is true for everyone that they need to replenish their energies following a stressful period, and that confidence in your own abilities cannot be taken for granted again straightaway. I believe that everyone is capable of grasping what is going on in their lives and I am convinced that we can all learn from our own experiences. Perhaps for some people things will go a little bit more slowly or painfully than for others, but it is never impossible.
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