Table Of ContentD I A G N O S I S : S C H I Z O P H R E N I A
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D I A G N O S I S : S C H I Z O P H R E N I A
A Comprehensive Resource for Patients,Families,and Helping Professionals
Rachel Miller and Susan E. Mason
columbia university press new york
Columbia University Press
Publishers Since 1893
New York Chichester,West Sussex
Copyright © 2002Columbia University Press
All rights reserved
Library ofCongress Cataloging-in-Publication Data
Diagnosis:schizophrenia :a comprehensive resource for patients,families,
and helping professsionals / [edited by] Rachel Miller and Susan E.Mason.
p. cm.
Includes index.
ISBN 0-231-12624-7(cloth :alk.paper) — ISBN 0-231-12625-5(pbk.:alk.paper)
1.Schizophrenia — Case studies. I.Miller,Rachel,M.S.W. II.Mason,Susan Elizabeth.
RC514.S583 2002
616.89(cid:2)82-dc21 2001056187
Columbia University Press books are printed on permanent and durable acid-free paper.
Printed in the United States ofAmerica
c 10987654321
p 10987654321
contents
foreword vii
introductory note ix
acknowledgments xi
about the authors xiii
using this book xix
Introduction:So They Say We Have Schizophrenia 1
1.In the Beginning 5
2.So Many Questions:The Quick Reference Guide 18
3.How the Brain Works 27
4.What Is Schizophrenia? 35
5.Why Me? 42
6.Diagnosing Schizophrenia 50
7.What Will People Think ofMe Now? 55
8.Medication 68
9.Out ofthe Hospital and Staying Well 82
10.Coping with Positive and Negative Symptoms 95
11.Coping with Other Symptoms and Side Effects 104
12.Drugs,Alcohol,and Safer Sex 114
13.Under the Microscope 129
14.Zelda’s Story 136
15.Who Am I Now? 146
16.Getting the Social Services You Need 155
17.Vocational Rehabilitation 166
appendix 1.client assistance program directory 173
appendix 2.vocational rehabilitation directory 177
appendix 3.other resources 187
index 191
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foreword
In 1966,when I was a student,I attended my first case conference in a psychi-
atric hospital.Sitting around the table were the psychiatrist who was the di-
rector ofa 150-bed division in this large urban hospital,the patient’s treating
psychiatrist,and other members ofthe treatment team:a social worker,a clin-
ical psychologist,a clinical psychology intern,and other students.The patient
we were discussing was a young man who was experiencing his first hospital-
ization,and everyone seemed to agree that the evidence pointed to a diagno-
sis ofschizophrenia.When the discussion was over,all eyes turned to the di-
rector.He nodded sagely and said something like:“This is a very nice young
man.We should not give him such a terrible diagnosis at this time.When he
comes back the next time...that will be time enough.Now,let us find an-
other diagnosis.”There was a universal nod ofagreement,and then the group
found another diagnosis.
In 1999I attended another case conference,this time for a young woman
who was experiencing her first hospitalization.The patient was interviewed
by the head ofthe psychiatry department,with staffand trainees observing.
The staff provided additional information regarding psychological testing
and a treatment course.Then there was a lively discussion about diagnosis.
One of the senior staff voiced the same sentiment I had heard more than
thirty years earlier:“Don’t use the word schizophreniayet.Let’s wait.”
This book counters the assumptions that underlie those statements:that
using the word schizophreniashould be shunned for as long as possible;that
using it as the diagnosis ofa patient is necessarily a bad thing;and that peo-
ple for whom it is an appropriate diagnosis have no hope and no expectations.
Diagnosis: Schizophrenia was written by Rachel Miller, A.C.S.W., Susan
Mason, Ph.D., and a group of patients who participated in the New Onset
Psychosis Program at Hillside Hospital,a division of North Shore-Long Is-
land Jewish Health System.It grew out of the patients’desire to share with
viii foreword
others their experiences with the illness and how they have coped with and
solved problems.The initial experience ofschizophrenia can be frightening,
and the chapters that follow,told by people “who have been there,”are de-
signed to help chart a path toward recovery.
We hope that Diagnosis: Schizophreniawill find a place in hospital waiting
rooms,in social workers’offices,and in the back pockets ofpatients and their
families who have just heard the diagnosis ofschizophrenia for the first time.
Its purpose is to develop and strengthen understanding and offer tools for pa-
tients,their families,and those who provide treatment.The chapters are short
and to the point,and they cover a wide range of issues from hospitalization
to rehabilitation.Dip in and read a chapter that deals with a current problem,
or read the book cover to cover.Diagnosis: Schizophrenia brings a new per-
spective to the information on coping with mental illness that is available
through a range ofsources.
Nina Schooler,Ph.D.
Director ofResearch
Hillside Hospital
North Shore-Long Island Jewish Health System
introductory note
This book recounts the journeys of thirty-five young people. The job they
have given us is to share with you the information we used to help them in
their recovery.
Diagnosis: Schizophreniais a very special book because it is written both for
people who have schizophrenia and for those who wish to understand how it
feels to have the disease,including the patients themselves,family members,
students,and anyone with an interest in how people sustain hope through an
initially debilitating illness. This book is unique because people who have
schizophrenia provided their stories and helped to design and edit much ofit.
A panel ofhighly recognized experts in the field—psychiatrists,psychologists,
nurses,social workers,and psychiatric rehabilitation workers—contributed
to and reviewed the manuscript to ensure that the content is both accurate
and up to date.However,we want to emphasize that from its inception,our
patients played a major role in every stage of this book’s development, in-
cluding the writing,editing,and illustrating.Our patients were our most rig-
orous critics,and we listened to and acted on their comments.
In Diagnosis: Schizophreniawe attempt to explain how it feels to have the
disease and to go through the stages of recovery using a number of first-
person accounts provided by patients.These very special young women and
men,all in the first five years ofthe illness,share their initial experiences,their
changing relationships with family and friends,and their lives in treatment.
Most important,they relate their newfound hope for the future that is based
on their understanding ofthe disease and its management.
We also include useful information on medications,clinical research,so-
cial and rehabilitation services,and the cause and progression ofthe disease.
These sections are designed to help patients understand what has happened
to them and how to get help.The social and rehabilitation services chapters
contain information about Medicare,Medicaid,housing,job coaching,and
