Experiencing Psychosis

Personal and Professional Perspectives

Jim Geekie, Patte Randal, Debra Lampshire, John Read, Jim Geekie, Patte Randal, Debra Lampshire, John Read

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781136655821
• Edition: 1
• Topic: Psychologie
• Subtopic: Abnormale Psychologie

Extensive scientific research has been conducted into understanding and learning more about psychotic experiences. However, in existing research the voice of subjective experience is rarely taken into consideration. In this book, first-person accounts are brought centre-stage and examined alongside current research to suggest how personal experience can contribute to professional understanding, and therefore the treatment, of psychosis.

Experiencing Psychosis brings together a range of contributors who have either experienced psychosis on a personal level or conducted research into the topic. Chapters are presented in pairs providing information from both personal and research perspectives on specific aspects of psychosis including: hearing voices, delusional beliefs, and trauma as well as cultural, existential and spiritual issues. Experts from the field recognise that first and foremost psychosis is a human experience and that those who suffer from psychotic episodes must have some involvement in any genuine attempts to make sense of the experience.

This book will be essential reading for all mental health professionals involved with psychosis. The accessible style and compelling personal histories will also attract service users and their families.

Chapter 1

Introduction

Jim Geekie , Patte Randal , John Read and Debra Lampshire

If you do not know what is wrong with a person, ask him: he may tell you.

George Kelly (1955: 322)

Among the defining characteristics of human beings is our great appetite for developing, reflecting upon and sharing with others our thoughts about the nature and meaning of our experiences. This quality permeates much, if not all, human behaviour and is, perhaps, most in evidence when we consider experiences that are deemed unusual or atypical. Run-of-the-mill everyday experiences may pass us by without attracting such scrutiny, but experiences which are out of the ordinary grab our attention and almost demand of us that we try to make sense of them. This is true, we contend, both of experiences in the world around us and of more intimate, private experiences – such as a dream, for example – that may be accessible only to the individual concerned.

Our concern in this book is how we go about the business of understanding and relating to a range of extra-ordinary human experiences. The particular experiences that concern us here are those that in clinical and scientific parlance tend to be referred to as phenomena that indicate psychosis and may be associated with diagnostic terms such as ‘schizophrenia’. These might include experiences such as hearing voices that other people don’t hear (‘hallucinations’), or developing unusual, sometimes troubling, beliefs that don’t seem to be supported by observable evidence (‘delusions’).

While the kinds of experiences we are talking about are, by and large, private in nature, in that they are immediately accessible only to the individual who actually has the experience, making sense of and deciding how to relate to these experiences commonly takes place in the interpersonal and social domain. Extensive scientific research has been conducted into understanding these experiences, although this research rarely takes account of subjective aspects of the experience. Widespread and well-established clinical and social services exist throughout the world to provide support to those who are troubled by these experiences, and this can, and is, sometimes provided in a compulsory manner, using powerful legislation which stipulates how these experiences should be understood and how they will be responded to (and this will commonly include enforced use of medication and/or admission to hospital). We mention these practices at this point not to disparage them, but to support our contention that making sense of psychosis takes place in the social arena and not purely within the mind of the individual who has these experiences, and that the sense we make can have major consequences in people’s lives. We are well aware that experiences such as these and the behaviours that sometimes accompany them can be associated with considerable levels of confusion and distress for the individual concerned, for his or her family and friends, and sometimes for society at large, which may help explain why such practices have tended to occur.

However, given the nature of the phenomena we are referring to, it seems to us that the experience of the individual concerned must be central to any understanding of psychosis that we may develop. Sadly, if we look at the scientific research, we can see that this position is not shared by the vast majority of those who conduct research in this area, where the voice and perspective of the individual who experiences psychosis has been marginalized, occupying the position of what the French philosopher Foucault (1980) refers to as a ‘subjugated knowledge’. One long-term advocate of recognising the importance of the subjective experience of those who experience psychosis, the American psychiatrist John Strauss (2008), recently lamented that – accurately we believe – ‘There has been a major failure to consider adequately patients’ subjective experiences in theory, research and practice.’

This neglect of the first-person perspective is, we believe, a tragedy of major proportions, for a number of reasons. Those who have such experiences feel ‘silenced’ and often subjected to the perspectives of others. Our understandings of psychoses are hampered by our failure to recognize the great contributions that can be made by those who are most intimately familiar with the phenomena. Opportunities for genuine collaboration between those who experience psychosis, and clinicians and researchers are lost. No doubt there are many other implications of this tendency to overlook the expertise of those with firsthand lived experience of psychosis. One of our aims in putting together this book is to help remedy this failure, by demonstrating the value of attending to the subjective experience of psychosis. Our hope is that this book will help shed some light on what it is like to have such experiences, encourage some consideration of how we might understand these experiences and develop some ideas around how we might relate to those experiences in ways which minimize any associated distress.

To achieve this goal, we invited a number of experts from around the world to contribute a chapter on the subjective experience of one particular aspect of what is referred to as psychosis. Following a discussion of the importance of personal understandings by David Roe and Paul Lysaker in the chapter following this introduction, the main body of this book consists of pairs of chapters on specific features of psychosis. The first chapter in each pair is a first-person account, given by an ‘experience-based expert’ (that is, someone who has firsthand lived experience of the phenomena being discussed). The second chapter in each pair is a discussion of scientific research into the subjective experience of the phenomena being considered. Our belief is that these chapters, though they were written entirely independently of each other, complement each other and demonstrate, first, that attending to subjective experience is an absolute requirement if we hope to develop adequate understandings of and clinical approaches to the experience of psychosis and, second, that the expertise of experience-based experts and researchers/clinicians (some of whom are themselves experience-based experts) in this field can – indeed must – be recognized for the unique contributions that each can make to the task of understanding the experience of psychosis. Genuine collaboration between the perspectives of firsthand lived experience and the research elaborating this, along with an acceptance of the differences and tensions between them, is a prerequisite if we are ever to make substantive progress towards understanding the all-too-human experience of temporarily losing one’s bearings in the world. We must recognize that, first and foremost, psychosis is a human experience and as such is no different from a whole range of other human experiences. Understanding and appreciating the experience is enhanced by contributions from a range of perspectives, but can never be complete, never be even adequate, if the perspective of those who have firsthand knowledge of the experience concerned is excluded from the discussion of what the experience is, how best to understand it, and if and how we might respond to it.

At this point, we should stress that we are not arguing that subjective experience is somehow a royal road to some kind of infallible truth. We are arguing, simply, that subjective experience must be attended to, not that it is infallible. Here, we agree with the position of the British psychologist David Smail, who argues that: ‘The subjective perspective needs to be evaluated intersubjectively (which brings it as near as possible to being objective) but there is still, ultimately, no authority beyond it’ (Smail 2004: 33).

We agree with Smail that even personal accounts of experience are, and should be, subject to evaluation by others and that this evaluation is an essential consideration in gauging the contribution that these accounts make to our knowledge base. Sharing one’s personal story, or one’s research, in the public domain opens the way for such evaluation by others, where the reader can reflect upon the contribution the writer makes to our understandings of the experiences concerned. To encourage such considerations, as well as to establish some uniformity of structure in the book, we requested of contributors that, after discussion of their personal experience of or research into subjective experience, they should identify ‘implications for understanding’ and ‘implications for practice’ which emerge from their account.

As editors of this collection we have been moved tremendously by the generous, compassionate and perceptive accounts of the subjective experience of psychosis that the reader will encounter in this volume. We feel enormously privileged to have been entrusted with the stories shared in this book, and we would like to extend an invitation to the reader to listen to the diverse chorus of voices contained herein, each of which strives in its own unique way to express something about the nature of the human condition, something which often lies at the limits of what our language can sensibly convey, but which is ultimately the essence of what it is to be human: the experience which some call ‘psychosis’, some call ‘madness’ and others – as the reader will no doubt discover – argue we must recognize as an understandable response to intolerable, unbearable suffering.

References

Foucault, M. (1980) ‘Body/power’. In C. Gordon (ed.) Power/Knowledge: Selected Interviews and Other Writings, 1972–1977 (pp. 55–62). New York: Pantheon.

Kelly, G. A. (1955) The Psychology of Personal Constructs, Volumes I and II. New York: W.W. Norton & Co.

Smail, David (2004) Power, Responsibility and Freedom. Retrieved from: www.davidsmail.info/intpub.htm

Strauss, J. (2008) ‘Prognosis in schizophrenia and the role of subjectivity’, Schizophrenia Bulletin, 34: 201–203.

Chapter 2

The importance of personal narratives in recovery from psychosis

David Roe and Paul H. Lysaker

What we attend to is a matter of choice, a choice which is influenced by the context in which this choice is made. What we choose to attend to amongst the endless possibilities presented to us at any given moment is also a by-product of what we were taught, trained, encouraged and reinforced to view as valuable. A child may sit with his parents at a circus and be fascinated by a child his age sitting in the next row. His parents may actively encourage him to pay attention to the stage where the exciting show for which they bought expensive tickets is taking place.

At any given moment, a combination of internal and external forces, with various degrees of harmony or tension, influence what we end up choosing to attend to. For example, as clinical psychology interns at a community mental health clinic, we would, with great reverence, bring the raw data of the ‘Bender’ and ‘Draw A Person’ tests to supervision sessions with the chief psychologist who we simultaneously admired and feared. Our emerging clinical skills were primarily attuned to cues signifying what we should be attending to as well as its ‘correct’ interpretation. The size, proportion, intensity and location of the shapes and lines, so we learned, had profound meanings which we were taught to attend to and interpret in specific ways to complete a ‘successful’ assessment. At least successful enough so that the chief psychologist would approve our taking the licensing exam.

But what does a child sitting in a circus or a bunch of frightened clinical psychology interns have to do with the importance of narratives in recovery from psychosis? It is because, like the child or interns, when talking with a person who has experienced psychosis, as a listener one has to choose what to attend to when trying to understand and provide help. As Miller Mair (1989: 1) put it: ‘We have not been encouraged to suppose that we are choosing to tell tales in particular ways, for particular ends, and for the approval of particular audiences.’ In a recent first-person account of psychosis, Kean (2009: 1) writes: ‘I was totally separated from myself, not knowing what action I was taking, let alone considering how to “communicate” … I was unaware of myself, and my psychiatrist was unaware of me.’ In this chapter we will posit that a purpose for attending to the experience of persons with mental illness is to assist their ‘personal recovery’ (Slade 2009). If we are listening to people who have experienced psychosis in order to help them find the lives they are searching for, it would seem essential to carefully understand how they have made meaning of the story of their lives and their experience of psychosis. This process of developing ‘enabling narratives’ can occur without clinical assistance, and sometimes even despite clinical assistance, when those may undermine the narrators’ roles as authors of their own experience. Debra Lampshire’s account in this book is one such example.

But what do we know about the personal narratives of persons who have experienced psychosis? As we will see in the chapters which follow, many who have experienced psychosis are capable of constructing, and sharing, as they do in this book, their own unique narratives of their experiences and their varied ways of understanding, relating to and dealing with them. This chapter will focus on how we might listen to and understand the unique stories of unique persons who have experienced psychosis. It is divided into four sections. In the first we will explore what can be learned from first-person narrative accounts of mental illness. In the second and third we will explore qualitative and quantitative analyses of personal narratives. Finally, we will comment briefly on the theoretical and clinical implications of this work.

Researching personal narratives among people who have experienced psychosis

First-person accounts of mental illness

Modern descriptive psychiatry has tended to focus on what can be readily observed and measured. As such, much of our tradition involves persons in the position of expert drawing conclusions about the meanings of the experiences of others. Strauss (1989) was among the first to draw attention to how focusing narrowly on the effort to meet a particular conception of science has generated an unscientific tendency to ignore large amounts of important data simply because they are difficult to measure reliably using standard methodological tools. According to Strauss, essential information is lost in the process of systematically characterizing individuals’ experiences on the basis of questionnaires or structured interviews. Frank and Frank (1993) point out, for example, that descriptive psychiatry’s ‘atheoretical’ stance actually posits a theory in itself: that the meaning people attach to their experiences, their beliefs about and attitudes towards their experience of psychosis, and their social and historical context are all unimportant. Morstyn (1994) argues that many concepts lose their essential meaning in the process of operationalizing them so they can be reliably coded and subjected to statistical analysis. Chadwick (2006) accuses biomedical approaches in schizophrenia research of trapping clinicians in conceptual schemes which prevent them from listening to the experiences of their patients, leading to the alienation of healer and sufferer. Lysaker and Lysaker (2008) note that without a valuation of the life and experience of persons with any condition we hazard undermining the study of that disorder as a meaningful element of the human condition, amputating the person from the disorder.

One response to this criticism is an effort to understand psychosis from the ‘inside’ and explore the way it is experienced. Here we are referring to narrative characterizations of mental illness by persons who have experienced psychosis. Starting with pioneers such as Judi Chamberlin, Pat Deeg...