Nursing and The Experience of Illness

Phenomenology in Practice

Irena Madjar, Jo Ann Walton

• Publisher: Routledge
• Year: 2005
• eBook ISBN: 9781134620869
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

Nursing and the Experience of Illness encourages nurses to reflect on the experience of their patients, in order to improve their practice and to develop an individualised approach to care. Vivid case studies present real nursing encounters and offer a user-friendly model for independent research by the reader.This accessible introduction to phenomenology for nurses explains what has become one of the most widely used qualitative research methods within healthcare and covers topics including: *phenomenology in nursing
*critical illness and intensive care
*breast cancer and mastectomy
*living with schizophrenia.

Building on the work of key nursing theorist Patricia Benner, this readable way in to qualitative research in nursing will be suitable for both undergraduate and postgraduate nursing students.

Six

On living with schizophrenia

JO ANN WALTON

This chapter is drawn from the author’s phD study, which examined what it is like to live with a schizophrenic illess. Ten adults who had been diagnosed with schizophrenia, each living in the community and taking regular medication, were visited and interviewed several times over a period of sixteen months, They were asked about their experiences, their illness and its effects on their everyday lives, The participants, who were contacted through an intermediary after ethical approval for the study was gained, included seven men and three women. They ranged to age from 21 to 64 years, and their occupations, paid or unpaid included a painter, a writer, an academic and an educator for a voluntary organisation. Some participants were unemployed, All had been diagnosed with schizophrenla at least two years prior to the study; in fact one had been living with the illness for over 40 years. Most participants were living in their own homes, although four were in supported or supervised accommodation.

In this chapter, nine of the ten study participants are represented, The other participant features in different aspects of the original work (Walton 1995),

All names used in the chapter are fictional, although during the course of the research several participants requested that their real names be used. Although this request has not been met, acknowledgement is made to each of the study participants who gave so generously of their time and who shared their experiences so frankly and with such good humour. Without their help the study would never have been completed.

FEW ILLNESSES IN today’s world are as baffling as schizophrenia. It is an enigma not only for those whose thoughts, perceptions, emotions and behaviour it so seriously disturbs, at least in its acute phases, but also for the generations of researchers, theoreticians and clinicians who have studied it since it was recognised as a distinct illness a hundred years ago. As one of the most serious of mental disorders, schizophrenia has been both researched extensively and feared widely.

The Latin saying ‘Whom God wishes to destroy He first makes mad’ is not far removed from the suggestion that schizophrenia is ‘a sentence as well as a diagnosis’ (Hall et al. 1985, cited in Torrey 1988, p. 1). The sense of tragedy conveyed in both these sayings is understandable. Schizophrenia is an illness whose cause (or causes) is unknown and for which there is no known prevention. Moreover, even though drug therapies are becoming increasingly successful in the control of symptoms and early intervention is holding promise for good prognosis in the young, there is no cure for schizophrenia. Estimates of recovery rates vary considerably, but it is widely held to be a long-term illness in the majority of cases. It has even been suggested that schizophrenia affects people so cruelly that it ‘leads to a twilight existence, a twentieth-century underground man’ (Torrey 1988, p. xv).

Little is known about what it is like to live with the illness—until quite recently the scientific community has paid only sporadic attention to the experience of schizophrenic patients. So, while there is a vast amount of literature on such aspects as brain pathology, neuropsychology and the clinical and neurological aspects of schizo phrenia, we have limited knowledge about the experiences of people with the illness, or the effects the illness has on their lives.

In recent years prevailing humanitarian and economic rationales have resulted in a virtually universal move towards the closure of institutions for the mentally ill and the reintegration of those with mental illness into community settings. Many people who are diagnosed with a major mental illness may now never be hospitalised, or may receive hospital treatment for only a very brief time. As a consequence, people with mental illnesses are becoming more visible in the community, and some groups are becoming more effective in advocating on their own behalf.

The deinstitutionalisation movement and its attendant notion of community care have emphasised the need to take notice of differences in individual needs and people’s quality of life (Bachrach 1988), while the need to learn more about the ways in which people with schizophrenia learn to cope with their symptoms has been identified as an important area for research (WHO 1991). Some excellent examples of work in this area can be found in such works as Barham and Hayward 1991, Goldschalx 1989, Leary et al. 1991 and Vellenga and Christenson 1994.

Of particular importance to nursing is the understanding of the experience of illness, defined by Kleinman (1988, p. 3) as ‘the innately human experience of symptoms and suffering’, rather than disease itself, which is equated with pathology. Morse and Johnson (1991) assert that understanding illness will lead to more effective healthcare. Indeed nurse researchers are becoming increasingly interested in the experience of living with persistent illness but, as yet, the knowledge base stemming from such interest is not sufficiently developed to guide nursing practice (Packard et al. 1991).

Aldiss (1989, p. viii) quotes Carl Jung as saying: ‘All we see of the mentally ill regarding them from the outside, is their tragic destruction, rarely the life of that side of the psyche which is turned away from us.’ The study on which this chapter is based was designed to try to see something of the side which is turned away.

A VERY BRIEF INTRODUCTION TO HEIDEGGER

In the thesis from which this chapter is drawn (Walton 1995), considerable use is made of the ideas and work of the German phenomenologist Martin Heidegger, particularly his early work in Being and Time (1927/1962). In this chapter I have endeavoured to minimise references to Heidegger in order to retain a more readable style. Much of Heidegger’s work is not easy to grasp, and I wish neither to baffle readers nor to use up space explaining complex ideas. However, there are a few of Heidegger’s concepts that are especially relevant to the points I wish to make here, and I trust that readers will bear with me in the few references to his work that are necessary in order that these points are made clear.

Heidegger’s writing concentrated on the nature of human existence in its ‘everydayness’. It is, he said, through our everyday dealings with things in the world and with other people, in our goals and projects, the intentions we hold, and the way we live out our hopes and values, that we are defined.

Heidegger used the word Dasein to refer to human existence itself (literally translated, Dasein means ‘being there’). Dasein, he says, is thrown into existence. The notion of thrownness relates to the fact that we are already in the world, and that we are there as we are, in a world which ‘was not of our making but with which we are nonetheless stuck’ (Hall 1993, p. 137). In the world we are thrown. into situations with certain possibilities and limitations. In Heidegger’s view, we are not simply in the world as entities among a world of other entities, we are not things among other things (Stewart & Mikunas 1974). Rather, Dasein, self and world are one (Dostal 1993, p. 155):

Dasein…is defined as being-in-the-world. The hyphens, almost as awkward in German as they are in English, are indicative of the fact that, as Dasein, self and world are a unity. The world is not something external but is constitutive of Dasein. We are born into a world whose culture and history make us what we are. The Christian view that ‘we are in the world, but not of the world’ is transformed. We are both in and of the world. ‘Worldliness’ is an ontological property of Dasein; it is our context of involvements.

Heidegger’s view is not a fatalistic and deterministic one. Rather it suggests that each of us is an individual, who must come up against history and the future in such a way that we make our own life according to our choices, within certain limits that constrain us. We are shaped by cultural and historical understandings, but have a certain, situated freedom within which to choose what we make of our lives. Since our world includes our history and our cultural orientations, the understandings that society has and has had about mental illness colour the beliefs held by sufferers, families and professional carers.

In this chapter I will concentrate on the way in which illness and treatment impacted on the study participants’ experience of Being-in-the-world. Other aspects of Being-in-the-world include relationships with others, managing life with an ongoing illness, and the whole process of making choices in life, depending on the things that matter to each individual. While some of these aspects of Being-in-the-world will be mentioned in this chapter, it is not possible to do justice to all of them here. Readers who are interested in following the discussion further are referred to the original study (Walton 1995) for more detail.

REALISING THAT ONE IS UNWELL

It is not a simple matter to acquire a diagnosis of schizophrenic illness. The early signs of schizophrenia can be insidious and may be more easily recognised in retrospect. Commonly health professionals do not name the illness until months after the onset of symptoms, and people who are becoming ill, and sometimes those around them, may find it difficult to believe that anything is seriously wrong.

As Liz explained, in the normal course of life, people doubt neither the evidence of their senses nor their own beliefs. When she was acutely ill, Liz believed that she was clairvoyant and that she had discovered some connection between the Russians and the weather. In spite of what sound to outsiders like most unusual thoughts, Liz carried on with her life as she always had:

It felt pretty normal actually. Although it was…it wasn’t normal at all. But… when I had no insight…don’t doubt yourself, you know, you don’t sort of think oh, you know…well you don’t have any doubts about, well I try not to anyway. You make a decision and you think…or you think about something and you come up with the answer and you don’t…don’t think oh, you know, I could be wrong, you know, and get all stressed out about it, you son of stick to your decision and go about your business, you know. And that’s what it’s like, you know, you just make up your mind, I mean however bizarre it is, you know, and just go about doing something about it. So that’s…feels pretty normal. Sounds strange, eh?

Although in retrospect Liz recognised these thoughts as symptomatic of her psychotic illness, at the time she did not doubt her perceptions or the reasoning which explained them. Judith told her parents that she was hearing voices but they did not accept this. In contrast, Michael’s friends were aware that something was wrong considerably earlier than he was:

Then the two chaps I was travelling around with in Europe they found that I was very slow. In my actions and speech and everything. And they always used to have me on about it. And I could never understand why they used to have me on about it all the time because as far as

I was concerned I was keeping up with them. But they could see differently, you know, and that was one of the things that really stood out, you know, but at that stage I never realised there was anything wrong with me.

Chris expressed concern at the way in which social welfare benefits may enable people who are seriously ill to ‘disappear’ in our society—away from the public eye—in circumstances that may be desperate. Keeping to oneself may be one way to avoid treatment which, as Chris explained, can be very frightening to contemplate:

When you have a system where you’re bankrolled, but on the dole and stuff…like my illness wasn’t diagnosed because I was able to stay on the dole for all those years and I was in hell, I was in a living hell. I was ill. But I could collect the dole and live in a private hotel, not speak to anyone, everyone was saying go to a hospital, go to hospital; I wasn’t going to go to a hospital unless I was forced because I’d seen One Flew Over The Cuckoo’s Nest and I’d seen it through certain eyes. And I just thought it was a nightmare. I just identified with Jack Nicholson. I saw it again after I’d been in hospital and I identified with the nurse. [Laughs] Nurse Rat Shit.¹ I could see it. I thought what a marvellous person she is.

The symptoms of illness itself may also lead to a fear of treatment, as Judith described:

The first time I went to the hospital I was sure that I was being watched. So I thought people were watching me, things like that. And I said to [my partner] David, ‘I’m not safe.’ That’s how it made you feel, like you weren’t safe around anybody.

As their illness developed, the normal way of Being-in-the-world for each of these people came under challenge. Liz had strange new powers of clairvoyance which required contemplation and action. Judith heard voices which disturbed her yet which her parents were dubious about, and she felt frightened everywhere she was, even when presenting for the help she later realised she needed. Michael was puzzled by the reaction of his friends who appeared, in his view, to be unfairly intolerant of his actions and manner. Chris was, in his words, ‘in a living hell’, yet his understanding of a popular film of the time left him in very real fear of seeking or being sent for treatment. While he later laughed at his interpretation, it was his experience at the time, a reflection of the world into which he had been thrown. Each of these people conveyed their certainty about their thoughts, behaviour and judgement in the face of experiences that sound unusual and, in some instances, very difficult for anyone else to believe. But at the time these people had no reason to doubt their own judgement.

RECONCEPTUALISING ONE'S BEING-IN-THE-WORLD

The recognition that they were unwell and required treatment, however slowly it dawned, led each of the participants to reconceptualise their Being-in-the-world. Previous explanations for perceptions, actions and the cause of unusual experiences had to be overturned.

Michael, Chris, Roger and Jack all believed that they had been sick from a very early age. Since this was the way they had always been, or so they believed, it was difficult for them to accept that they were unwell. Another reason for participants not thinking they were unwell was that there were other ways of explaining ‘different’ ideas, beliefs and behaviours. Chris succinctly described the role of changing fashion in ideas as contributing to his inability to acknowledge a problem:

I think of it as me being sick from the day I was born really.

(Do you know a lot of people have told me that. But you just didn’t know till later?)

No…because there are all sorts of other things mixed up in it, there are current political ideas and fashions that fit in with your illness so you think that’s…grasp those and you don’t think I’m being ill, you think I’m being fashionable [laughs].

Things were a little different for Judith and Liz, who both acknowledged the regular and heavy use of street drugs such as marijuana and hash oil and felt that this had possibly been the precipitating cause of their illness. In addition, Judith was involved in studying the zodiac, tarot cards and other occult practices and was uncertain about dismissing the power of the spirit world in having something to do with her problems.

Whatever the cause of the illness, coming to terms with it as an illness, and reconceptualising one’s Being-in-the-world in this light, was a gradual process with weighty consequences. Some of the problems that arose for participants stemmed from having to deal with the prejudices of others once their illness had been given a name. Other consequences arose from treatment, and its effects on the body as well as on the mind.

ILLNESS, TREATMENT AND BEING-IN-THE-WORLD

Both illness and treatment affect the whole of one’s Being. Although schizophrenia is thought of as primarily a mental illness, in fact it has major effects on the body as it is lived, as do hospitalisation, drugs and other therapies such as ECT (electroconvulsive therapy). There is no way to separate, for instance, the sensation of hearing voices from the experience of hearing; nor is there a way to separate visual hallucinations from the experience of sight, or tiredness or fear from an experience of body, mind and spirit together. One hears voices, sees things, feels tired, anxious, restless or afraid. Each of these symptoms is an experience that affects Being-in-the-world as a whole.

Different symptoms bothered participants to varying degrees. No two participants had identical symptoms, although several were described in very similar ways. Since all the participants were taking medication it would be difficult to determine in any objective way which symptoms and experiences were related to illness and which to treatment, and to what degree. Although on the whole the participants were clear as to which was which, in a phenomenological study such as this the distinction is not critical: having the illness meant that all the participants took regular medication, so both the illness and its treatment had, at the time of the study, become part of their Being-in-theworld.

HALLUCINATING

Hallucinations, perceptions for which there are no external stimuli, are a common symptom in schizophrenic illness, and these were described in vivid detail by those participants who had experienced them. Hallucinations may involve any of the senses. In the following cases they were auditory, visual or tactile, but whatever the type, they had powerful effects on the person experiencing them. As they are lived, hallucinations are not simply mental or perceptual phenomena. The...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Foreword
• Contributors
• Acknowledgements
• Introduction
• one
• two
• three
• four
• five
• Six
• seven
• eight
• nine
• Epilogue
• REFERENCES