Of course, anyone can get healthier and more resilient, and I can too — despite the diagnosis of schizophrenia. It bothers me when certain experts say that schizophrenia is genetically determined and incurable, and can only be treated with a lot of antipsychotics and other psychiatric medications — for the rest of one’s life. There I protest. Because my own experiences have shown that specific exercises can help me to recognize the early symptoms of psychosis even earlier and more subtly, and reduce their intensity — even the delusions! This is my personal story of recovery, which I have been actively pursuing since the onset of my first psychotic episode in the summer of 2010.
My goal is to become permanently self-determined and free from psychiatric medications. For over three years I have been taking the dose that I have individually determined to be the lowest possible for me, namely 1 mg aripiprazole daily, and I am steadily getting livelier and more stable.
I use my increased time as a healthy person for campaigning for more inclusion, diversity, equality, and human rights. In 2022 I was the overall coordinator of the Mental Health Awareness Week, a joint project of the Max Planck Gesellschaft (MPG), a leading German research organization with its 86 Max Planck Institutes, which ran from October 10th, the World Mental Health Day, until October 14th. The online event offered lectures and workshops on a wide range of subjects related to mental health, from prevention to inclusion. With up to 1900 participants and over 60 supporting institutions, both inside and outside the MPG, the week was a great success. I am also Works Council chair and officer for workplace health at the Max Planck Institute for Medical Research in Heidelberg, and a committee member in Asylarbeitskreis Heidelberg, a non-profit association for refugee support, and I sing in Heidelberger Beschwerdechor, an inclusion choir. In my private life I am a married woman, daughter and sister. My personal return to health has been decisively helped by people around me, to whom I am more grateful than I can say.
In the first six years after my first diagnosis, the realities of my life looked completely different. I was taking 15 mg of aripiprazole daily, which is considered the standard dose for maintenance therapy, and thus 15 times my current lowest possible aripiprazole dose — despite serious (side) effects that included loss of ability to think, feel, and act, and loss of satiety, thus resulting in obesity. At that time the psychiatrists declared that I was healthy — after all, I had no relapses and held a full-time job. They viewed the (side) effects of the medications as symptoms of schizophrenia. I now realize that at that time I was just managing to maintain my independence so as to not appear in society to be problematic, needy, or pitiable. When the medication kept me from recognizing problems, it was really as though I had no problems, and therefore didn’t cause problems. And so I became an unproblematic and invisible being and lived out an existence as a shadow on the borders of society.
Then, in 2016, when I started experimenting systematically on myself to live as far as possible without psychiatric medication, I got no support from my psychiatrist: on the contrary! Even a reduction of aripiprazole to 10 mg daily was viewed with suspicion, and no further reduction was allowed — until I stopped going to her and started to fight on my own to get my life back. My first two attempts at quitting (when I had finally found a psychiatrist and a psychotherapist who treated me as an equal and were open to my experiment) landed me in the clinic in 2018 and 2019. My status as a seriously disabled person was then confirmed for a limited period, which gave me some protection at work and made dismissal slightly less easy. It was only through these experiences with quitting that I realized how free of medication I could become, and how the first psychotic symptoms arose in me.
After my third attempt at quitting, I began to find out where the lowest possible dose of antipsychotics lay: a level where I had as few (side) effects as possible and still remained stable. That was the best thing that could possibly happen, and today I am still learning to register changes in my perceptions, thinking, feeling and acting ever sooner and more subtly. I am learning to distinguish between withdrawal symptoms and my susceptibility to stress and psychosis. I am learning, step by step, to replace the protective effect of antipsychotics with my own resilience and to LIVE — as intensely as possible.
For me, schizophrenia is a problem of how information is wired: too few sources of information in my brain and in the environment are coupled so as to be healthy and life-strengthening. Antipsychotic substances inhibit the linking of information sources, regardless of whether they are healthy or not. Thoughts, feelings and actions simply get buried, along with the individuality of the person who is being treated with excess medication. Today it is incredible to me how far antipsychotics artificially made me unable to judge or act. It was as though I was robbed of my ego and thus dehumanized. And yet my psychiatrists at that time told me I was healthy and the antipsychotics were good for me. Good for me? Or did they mean good for them, because I was compliant and easy to care for?
The great challenge, in my opinion, is that this situation cannot be improved by simply and collectively stopping the use of antipsychotics and psychiatric medications, because less use of medications means that more interventions without them will be needed to treat stress and psychosis. It seems to me that the whole of society in the First World is at its limit right here: where psychiatric medications are endlessly available while alternative therapies are inadequate. When schizophrenia sufferers are treated with (too many) medications and then stop taking them because of the intolerable (side) effects and are left alone, the result can be a severe relapse. They are then often passed on to clinics where they are treated with still more and stronger medications. The vicious circle of excessive medication, stopping and relapsing can cause patients to lose all hope of improvement, and ends up being dangerous or even fatal.
Yet approaches without medication are available, such as Open Dialogue, which is based on reciprocal attention and appreciation on the part of all participants and has proved effective in preventing relapse. It is clear to me that all of society, i.e. not just affected persons but also the relatives, other caring persons and health professionals need to be willing to work actively and systematically on themselves, to listen and talk to each other as far as possible. Without these joint efforts towards a social co-existence with mutual respect, improvements or (partial) cures for so-called schizophrenia and mental disorders in general will, in my view, hardly be possible.
Becoming more resilient means, for me, that I take the fragments of my identity which have become lost in the course of my life so far, and carefully and attentively re-assemble them into an intact ego so that I can perceive myself ever more accurately and clearly. What am I and why? Where is my place in this world? I look back on past times until they feel alive and warm: perhaps only for a moment, perhaps now and then, perhaps even for the rest of my life. I believe that it is helpful — and an essential part of living — to sense these moments and remain in touch with myself.
A simple exercise helps me to be stable with as little medication as possible. 1) I let myself be aware of how I really feel and why, and then 2) I consciously examine whether and how strongly the thoughts, feelings and actions are psychotic. When, for example, I hear a loud bang at home and then for a moment feel fear, I pause for a moment and assess inwardly what has happened: the bang came suddenly, the source was clearly the building site nearby. It is alright that I felt fear for a moment, but now no longer, because there is no danger from the building site. I can now relax, because I am not psychotic.
This means that I make myself consciously aware of what is happening in my head, both the thoughts and the feelings and the context in which they arose. In this way I narrow down the thoughts, feelings and context, which gives me confidence, and I can then let go of what I have realized. A cognitive exercise like this need only take a tiny moment. After years of practice, it happens in me almost automatically, and the repetition of the exercise has clearly shown me that early psychotic symptoms can be accurately reversed. I call the effect of this exercise my redundant mental filter, in contrast to the main mental filter which everyone is equipped with and which automatically sorts and filters information. When my main mental filter registers signs of a disturbance, I sense this with my redundant mental filter and, so to speak, can repair the main filter.
Becoming more resilient means, for me, also having more self-control and self-responsibility. I need to regain the control over and responsibility for my own thoughts, feelings and actions which have run loose, triggered and reinforced by the psychoses. What matters is the breaking out of the cycle of thoughts, feelings and actions around the delusion and other psychotic symptoms, to keep them from becoming chronic and finally to stop them. I believe that people in whom a schizophrenia has been diagnosed are less susceptible to stress and psychoses if their egos are more intact, self-controlled and self-responsible. Such experiences of recovery and resilience are made not only by me but also by my husband. He has likewise had experience of multiple psychoses, but for 13 years he has now been free from psychiatric medication and the psychiatric care system. Here he has successfully followed his own special path, which differs from my own.
Given these accumulating personal observations, I find it hard to understand why, even today, research on schizophrenia focuses so heavily on genetics; why helping affected persons involves antipsychotics above all; and why the knowledge and experience of affected persons are barely recognized. If we have an increased susceptibility to stress and psychoses, then there are always reasons for this, which are as individual as we ourselves are.
For improvements here or a (partial) cure, it is necessary to make care systems accessible and to determine the individual causes, so that we as sufferers can work with psychiatrists, therapists and other professionals in the healthcare system. The goal of every therapy should be that we can make our way in life as independently as possible. I am convinced that people will have fewer mental problems the more they are seen and appreciated as they are and want to be.
Excessive treatment with antipsychotics and psychiatric medication in general can hide the true causes of mental problems and disorders, stand in the way of real healing, and destroy real social interactions. As humans and as inhabitants of the Earth we all depend on each other: physically, intellectually, and emotionally. So all of us need to be willing to learn from and with each other in mutual respect, to live together and establish a resilient community.
Translated from the German by John Wray.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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