Table Of ContentLiving with AIDS and HIV
This book is dedicated to all those who
are living, and have lived, with AIDS and HIV
Living with AIDS and HIV
David Miller
Principal Clinical Psychologist and
Honorary Lecturer in Psychiatry and
Genito-Urinary Medicine
The Middlesex Hospital Medical School
London
with a guest chapter from
Chris Carne
M
MACMILLAN
PRESS
© The Contributors 1987
All rights reserved. No reproduction, copy or transmission
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First published 1987
Reprinted 1987, 1988
Published by
THE MACMILLAN PRESS LTD
Houndmills, Basingstoke, Hampshire RG21 2XS
and London
Companies and representatives
throughout the world
Typeset by Footnote Graphics, Frome, Somerset
British Library Cataloguing in Publication Data
Miller, David, 1955-
Living with AIDS and HIV.
1. AIDS (Disease)-Psychological aspects
I. Title
362.1'969792 RC607.A26
ISBN 978-0-333-43244-0 ISBN 978-1-349-18756-0 (eBook)
DOI 10.1007/978-1-349-18756-0
Contents
Acknowledgements vii
Introduction ix
1 The Virus and its Spread 1
The virus 1
Epidemiology 7
The antibody test 9
2 The Clinical Manifestations of IUV Infection
(by Dr Chris Came) 13
Persistent generalised lymphadenopathy 14
AIDS 15
3 Coming to Terms with Diagnosis and Being
Seropositive 21
Shock 22
Information 24
Interpreting the diagnosis or antibody result 26
Telling others· of your news 30
Managing the first few days 35
4 Practical Adjustments 39
Work 39
Safer sex 42
Infection control 49
Health boosting 54
Finance 60
5 Psychological Adjustments 63
Uncertainty 63
Anxiety and stress 66
Depression 84
CoNTENTS
Obsessive states 101
Suicide 106
6 Relationship Adjustments 111
Involving lovers and spouses 116
Friends and families 119
Planning for bereavement 123
7 Summary and Reports from Veterans 125
Religious issues 125
Summing up 126
Index 131
Acknowledgements
I am especially proud to acknowledge the enormous help and
support of many persons in the development of this work. For the
past two and a half years, I have been a co-facilitator of a fortnightly
group for people with AIDS, their families and loved ones, run
under the auspices of the Terrence Higgins Trust. This is really the
group's book, for they have provided the inspiration and ideas for
much of what is written here. We have certainly learnt a great deal
together. Other people with HIV, PGL and ARC, members of
Body Positive, and my patients, have made as great a contribution
to this work. Their courage, honesty, insight and humour have been
a constant inspiration in these past four years. They have offered the
most enriching examples of human striving and the most valuable
lessons in every sphere of personal and professional practice. To
them all, I offer my deepest thanks. I am indebted to Roger
Osborne, formerly Senior Editor, The Macmillan Press, for his
readiness to offer support and encouragement in the face of much
delay; and I offer my grateful thanks also to Chris Carne, Ian
Weller, John Gallwey, George Leach, Don Jeffries, Tony Pinching,
Riva Miller, Alana McCreaner and Jane Miller for their stimulating
ideas, their exemplary modelling of the best standards of clinical
practice, their helpful suggestions regarding manuscript changes,
and their support. The problems discussed have been ours. They are
presented here in the hope that they will be of help to others who
have had to, and will, face the enormous challenge of living with
AIDS and HIV.
Introduction
THE NEED FOR THIS BOOK
AIDS is, at the time of writing, still the subject of considerable
misunderstanding and fear, both in those who may be infected with the
causative virus, HIV (Human Immunodeficiency Virus)*, and in those
who care for people infected and with disease. This misunderstanding
persists for some good reasons. First, the popular media have been
slow to develop a responsible stance in reporting the infection (it is still
common to see persons infected with HIV being equated with people
with AIDS). Second, the infection and disease is still widely regarded
as a 'gay' disease, and stereotyping of patient groups and prejudice
against lifestyles held to be responsible for the passage of HIV into the
general community have stood in the way of greater social under-
standing and acceptance of those at risk. Third, HIV and AIDS
are new. This means that people generally are not yet sufficiently
aware of the disease and its presentation to become familiar with it.
This appears to be the case particularly in the health professions,
especially in areas away from the major medical teaching centres,
where AIDS patients are more common and treatment regimens are
more pr~ctised. To have HIV or AIDS is, in many places, to be a
medical novelty. In some instances, this means being a 'guinea-pig' in
the formation of particular medical policies and practices.
The newness of the infection and its disease states does not mean
that the disease is not understood. Since AIDS was first reported in the
medical press in mid-1981, it has become possibly the most intensively
researched medical phenomenon ever, with many governments
allocating millions of pounds world-wide to help further our
understanding of both the disease and its cause. Much indeed is now
understood about the virus. In particular, the ways in which it is
transmitted are well and reliably understood. This means that we know
how to stop the virus spreading.
As the range of medical and social knowledge about the virus grows,
it is clear that this knowledge must be passed on as widely as possible.
*Previously known as HTLV-111 or LAY (see Chapter 1).
INTRODUCTION
HIV is not something to fear-it is something to fight. But to fight it
effectively, everyone affected-patients, (para)medical staff, and
carers (lovers, spouses, families, friends, work colleagues)-must be
clear about what this phenomenon means on a social, medical,
practical and emotional level. And they must learn to communicate
this knowledge effectively. For so many of my patients, fears aroused
by their diagnosis or knowledge of infection have been matched by
their fears about the reactions of those around them. It is most
important that our management of this infection and its diseases be not
clouded by intolerance, prejudice or fear. AIDS is a disease, and HIV
is an infection, in which all 'victims' are innocent.
AIMS OF TWS BOOK
As a counsellor who has worked with many hundreds of people with
HIV and AIDS for the past four years or so, I have been surprised at
some of the difficulties involved in establishing resources available for
counselling those affected in parts of the United Kingdom away from
the London area. While working at St. Mary's Hospital in Paddington,
my colleagues and I founded the first comprehensive workshops in
Great Britain for medical and health staff working with patients. These
have been particularly successful in educating many staff about the
infection and its diseases. However, not all those infected will seek or
wi&h to be counselled by doctors and their colleagues, and not all health
staff have the required knowledge. For many, personal knowledge of
infection and/or disease will be a lonely and confused battle,
characterised by despair and fear. They will not know to whom they
should or could safely turn. Many have been confused by differing
approaches to particular issues related to their health. For example,
while some patients have reported that their plans for a controlled
health-food diet have been encouraged by their doctors, others have
said their physicians have dismissed such initiatives as 'a ridiculous
waste of money and effort'. Who is right? Many patients have asked
'Who do I believe?' when confronted by choices about the 'best' drug
regimen, or even the 'best' safer sex advice.
The aim of this book is to help in making choices easier for patients
and their carers when facing such confusions. It is not, as such, a
medical textbook. Rather, it is intended as a practical guide to coping
with the problems raised by HIV. The range of chapter subjects
reflects the issues most frequently raised in my experience with AIDS-
related counselling. If the book could be summarised in a couple of
phrases, they would be: 'Keep communicating', 'Master the facts to
master your circumstances' and 'Have courage and a sense of history'.
