Schizophrenia: What's in a name?

Excerpted from
Coping with Schizophrenia: A Guide for Patients, Families and Caregivers
By Steven Jones, Ph.D., Peter Hayward, Ph.D.

To be told that you or someone you love has a serious illness must be one of the most frightening experiences in life. "You have cancer... Your wife has Alzheimer's disease ... Your son has Multiple Sclerosis.": these sentences suggest death or serious disability, and no one would wish to hear them. This book is devoted to discussing the implications of an equally serious diagnosis, schizophrenia. We know from clinical experience that being told that you or a friend or relative has schizophrenia is a very frightening and confusing experience, perhaps in may cases much more frightening and confusing than with many other illnesses. Why should this be?

First of all, most people know very little about serious mental illness. Perhaps one percent of the population is diagnosed as having schizophrenia, and other serious mental illnesses like bipolar disorder are also just as common, but the general public knows very little about them. Even in professional circles, the diagnosis of schizophrenia is surrounded with controversy, as we hope to explain. In addition, some sufferers reject the diagnosis and do not accept that it applies to them, and sometimes this is true of their carers as well. This rejection can occur from many reasons, but can include misconceptions about what such a diagnosis means and what its implications are.

This can result in a great deal of confusion, confusion that we hope this book will help to dispel.

Is this book for you?

We wrote this book in the first instance for sufferers. If you are a sufferer, you have probably had a variety of odd and distressing experiences, for example hearing voices that others can't here, believing things that other people don't accept or feeling that strangers are intruding into your life in odd and uncanny ways. In addition to this, you may find that other people are frightened of you or don't understand you, and that you have been diagnosed with what sounds like a frightening illness. We hope in this book to help you to understand more about what is happening to you, and, more importantly, to show you what you can do about it.

We have also written this book for family members and carers. If you live with or are taking care of someone with a diagnosis of schizophrenia, this can be a very difficult and burdening experience. Again, we hope this book will give hope and show that there are many things that can make your loved one's life better.

"But there's nothing wrong with me!" There is another group of people who we think might find this book helpful: those who for whatever reason have received a diagnosis of schizophrenia but don't accept it. As we hope to show, there are a fair number of people in this category. Some people may have strange and troubling experiences but feel that they cannot accept being labeled with an illness, some may find the label troubling or unhelpful, and some may in fact have been wrongly diagnosed for a variety of reasons. In any case, to have received a frightening diagnosis is an unpleasant experience, and we hope that this book will help you to understand what that diagnosis means and doesn't mean. We also feel that, whether or not you accept that you have an illness, many kinds of help and support might be available, and you might choose to take advantage of some of them.

As we've already indicated, most people diagnosed with schizophrenia have a variety of strange experiences, such as hearing or feeling things that other people don't hear or feel. The general term used to describe such experiences is psychosis, or psychotic experiences. Some sufferers find this term insulting; they feel that doctors and professionals are suggesting that their experiences aren't "really real." This is an important subject, and we'd like to make our views on it clear in the following section.

Psychotic Experiences

The title of this section may seem a bit strange, but we believe that it goes to the heart of what makes psychotic experiences so troubling for those who have them and for those who don't. Both of us, in our work, have had the same conversation many times with many patients. If patients come to see a clinical psychologist, they usually believe, in some sense, that they have a problem. Often they may go further and say that they have some sort of illness. However, asked about the reality of their experiences, for example the voices they hear or the strange ideas they have, they will reply, "They're real."

Imagine for example a man who hears the voices of criminals threatening him, saying that they are going to kidnap him, torture him, and finally kill him, and that perhaps they are going to do the same thing to his family. To have such experiences, and to believe the threat is real, must be terrifying. One might well think, "Wouldn't a person prefer to believe that these voices are in your own head? After all, that would remove the threat." But in our experience, most people with such experiences do not find such ideas either comforting or acceptable; their answer is, "It's real." Why might this be?

As you read these words, you are probably sitting on a chair in a room. Imagine that someone came to you and told you that you weren't in a room at all, that you were really floating on an iceberg in the middle of the Arctic Ocean? You would undoubtedly think that this was a ridiculous idea. If a doctor, especially one you didn't know very well, told you this, and told you further that you needed to take some medication because you thought you were sitting in a chair, you would certainly believe her to be incompetent. Even if all your friends and family swore that this was the case, you would be bound to continue to doubt it. Most people who hear voices describe their experience of those voices as being as real as the chair you are sitting in.

But how can a voice be real if there is no one speaking? This might seem to some people a watertight argument, but not everyone would agree. Many religious people believe that God can talk to people, and some think the Devil or angels can also. People from some parts of the world have been taught from their youth that some people have magical powers, powers called for example voodoo or obeah: perhaps these voices have a supernatural cause. We also know that modern science is advancing all the time, and that governments and secret services may have access to technologies that the rest of us have not heard of. Do you know for a fact that MI5 or the CIA does not have a machine that can project the human voice over great distances? Perhaps these ideas might seem far-fetched to you, but we also know that the idea of a powerful electronic computer that can sit in the palm of your hand and yet gather information from around the world would have seemed pretty far-fetched as little as twenty years ago.

The point of this discussion is that most of us are seldom if ever asked to question the reality of our own experiences. We may disagree about things like politics or current events, but we agree with others about what is real and what isn't, and we don't usually have experiences that others find strange or unbelievable. Even if we might have had fleeting experiences which might have been strange or unusual they will not have been sufficiently intense or frequent to impact on the routine of our daily lives.

Often groups of people with unusual beliefs gather into small groups so that they can reinforce one another's beliefs. For example, in some churches, unusual experiences, such as speaking in tongues or falling suddenly into a fit, are accepted as normal and viewed as evidence of powerful religious faith. Outsiders might find this "mad", but for the members of the church, this is normal and acceptable. And indeed, they are entitled to say to outsiders, "You have never had these experiences, so you are not in a position to judge them. And you certainly can't produce any evidence that they are not the result of God or the Holy Spirit." Some things can't be tested or proved scientifically. In that sense, someone suffering from schizophrenia or another psychotic disorder is like a member of a church of one; he or she has unusual experiences of great personal significance but has no one to share them with.

One point about these experiences remains to be looked at: while most religious people find their beliefs comforting and encouraging, many psychotic experiences are deeply unpleasant, demoralising and frightening. Later in this book we will talk more about these experiences and the kind of suffering they can cause. Even though many of them are so unpleasant, many sufferers continue to believe that they are real, and some sufferers also find valuable in positive aspects of their experiences. In any event, they are often not helped by being told that what they experience is "not real."

As therapists, we tend to avoid arguing with patients: we can't tell them what they are experiencing, and, whatever we think of the causes of these experiences, we have to accept that, at least to the sufferer, they are real. Instead, we try to focus on finding ways of reducing distress, as well as helping the sufferer to understand that the experiences may be real to them, but are not real to most people. Perhaps the most helpful stance is to "agree to differ." It is also worth acknowledging at this point that for many people that key issue is not so much the experience of hearing voices or unusual beliefs: it is often the interpretation of these experiences and the fear or distress that this can cause which has the most profound effects on people's lives.

Help is available

So far we have explained who we are writing for and mentioned some of the factors that make schizophrenia such a difficult and confusing topic. But there is a final and most important point: a great deal of help is available to sufferers, and this book is designed to help them take advantage of it. The evidence shows that a diagnosis of schizophrenia does not necessarily condemn a sufferer to a lifetime of disability. Instead, the prognosis for sufferers is extremely variable. In addition, there are now a wide variety of treatments, including medical, psychological and psychosocial approaches, and new treatments continue to be developed. We also know that with almost any illness or problem, maintaining a positive attitude is very important, so a major goal of this book is to reinforce a sense of hope and optimism in sufferers and their carers.

What this book covers

Chapter Two provides a basic introduction to the facts about schizophrenia insofar as we understand them. We discuss how common this diagnosis is and review what is known about the causes and course of the illness. Chapter Three considers how schizophrenia is diagnosed. We also introduce a number of case histories that illustrate some of the different symptoms, treatments and effects of schizophrenia; these case histories are continued throughout the book. Chapter Four discusses some of the frightening and misleading ideas that are commonly held about schizophrenia.

Chapter Five talks about the role of other people, both professional and non-professional, and what sort of help or support they might be able to provide. Chapter Six discusses the various medications that are prescribed for sufferers, focussing on both benefits and side effects, while Chapter Seven talks about the new developments in psychological therapies. In Chapter Eight we discuss the role of self-help and how other sufferers can offer very helpful support. In Chapter Nine we discuss employment, while Chapter Ten is devoted to the impact of schizophrenia on families. Finally, Chapter Eleven looks at some of schizophrenia's long term emotional and practical consequences.

We don't seek to minimise the difficulties that many sufferers experience, but we believe that with the right help and advice many of them can improve their situations. We have both worked for many years with sufferers of serious mental illness, and we know how difficult and discouraging many sufferers find their illnesses to be, but we have also seen many sufferers make amazing progress in their own lives, and we hope that this book will contribute, in a small way, to helping our readers do the same.