Coping with Chronic Illness Theories, Issues and Lived
Experiences 1st Edition
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ii
iii
Coping with Chronic
Illness
Th eori es, I ssu es an d L ive d
Ex periences
Mille fili mi legano qui
V i vere la mal atti a
Silvia Bonino
iv
First published in English 2021
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
52 Vanderbilt Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2021 Silvia Bonino
Translated by Sheri Dorn Giarmoleo
Published in Italian by Laterza 2019
The right of Silvia Bonino to be identified as author of this work has been
asserted by her in accordance with sections 77 and 78 of the Copyright,
Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or
utilised in any form or by any electronic, mechanical, or other means, now known
or hereafter invented, including photocopying and recording, or in any information
storage or retrieval system, without permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks or registered trademarks,
and are used only for identification and explanation without intent to infringe.
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
A catalog record has been requested for this book
ISBN: 978-0-367-42153-3 (hbk)
ISBN: 978-0-367-42152-6 (pbk)
ISBN: 978-0-367-82223-1 (ebk)
Typeset in Sabon
by Newgen Publishing UK
v
For some time, Jul is hovering in the sky over this desolate
moor, it is inexplicable, it is a daily nutrient.
It is the most valuable inheritance I have received from
man … the best part of which continues to live in me.
Etty Hillesum, Diaries, 1941–1943
vi
vii
Contents
Preface for this edition xi
Why this book xiii
PA RT I 1
Chapter 1 Healthy and ill: equal and different 3
Chapter 2 Beyond the myth of perfect health 7
Chapter 3 Protagonist of one’s own development 11
Chapter 4 rotagonist of one’s own development
P
in chronic disease 15
PA RT I I 19
Chapter 5 Why me? 21
Chapter 6 Finding meaning 25
Chapter 7 Reconstructing identity 29
Chapter 8 Self-efficacy: the exercise of control 33
Chapter 9 Stress 39
Chapter 10 Coping with stress 43
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viii Contents
PA RT I I I 49
Chapter 11 It is all your fault 51
Chapter 12 Pain 55
Chapter 13 Fatigue 59
Chapter 14 Depression 63
Chapter 15 Mourning and loss 67
Chapter 16 Optimism and happiness 71
Chapter 17 Logical thought and magical thought 75
Chapter 18 Telling the story of one’s illness 81
PA RT I V 85
Chapter 19 The therapeutic relationship 87
Chapter 20 Trust 91
Chapter 21 Empathy 95
Chapter 22 T
he patient between statistical logic
and clinical logic 99
Chapter 23 Alternative medicine 105
Chapter 24 Confidentiality 111
PA RT V 115
Chapter 25 Us and the others 117
Chapter 26 Between visible and invisible 121
Chapter 27 Solitude 125
Chapter 28 Attachments 129
Chapter 29 Work 133
Chapter 30 Life and death 137
ix
Contents ix
PA RT VI 141
Chapter 31 Diagnosis: confronting the truth 143
Chapter 32 “I want to do it on my own” 147
Chapter 33 Being ill in the Internet age 151
Chapter 34 And life goes on 157
Chapter 35 Parents and children 161
Bibliography 165
Index 177
x
xi
Preface for this edition
When this book was first published in 2006, people suffering from
multiple sclerosis or other chronic diseases immediately grasped its
particular value. It was not a psychology or sociology book that
many perhaps would never read. It was not even an autobiog-
raphy, which many would have read, perhaps remaining unsat-
isfied, because everyone’s experience is unique and unrepeatable.
The book presented a completely new reflection, which brought
together psychological science with my personal, painful experience
of illness. In short, it was a book of science and testimony, and this
constituted its uniqueness and strength. The experience of illness
does not undermine theoretical reflection, making it less valid sci-
entifically, but forces it to become concrete, to ask itself about
the fallout of knowledge, which then becomes a tool not only for
understanding, but also for living the challenge of chronic disease
in everyday life.
For this reason, patients with multiple sclerosis, as well as other
chronic diseases, were the first to respond enthusiastically to reading
this book, which they felt was close to their experience: in it there
were things they could identify with, finding it as a key reading in
its usefulness, providing insightful indications and reference points
that everyone could try to use when facing the challenges of chronic
disease in the course of their daily lives. Points of reference and not
recipes, because each person is asked to make the references rele-
vant, given one current condition of their existence; points of refer-
ence they trusted because they came from a person seen as credible
due to her scientific competence and because, at the same time, she
lived with the condition of chronic illness.
From the reading of this book, then, a shared journey between
me and the many other ill persons started, that has deepened over
xii
xii Preface for this edition
the years, both through isolated meetings and my continuing work
of psychological support, dedicated in particular to those who have
just been diagnosed with multiple sclerosis. A sharing that has
permitted me to further explore the experience of illness and to
verify the validity of what is proposed in this book, where specific
attention is paid to the search for meaning, identity and the cap-
acity to pursue significant objectives, along with one’s illness.
As for chronic disease, the years we are living through are full of
lights and shadows. On one hand, great advances in medicine and
the increase in technical and specialist knowledge open up exciting
prospects, which unfortunately do not always translate into a global
cure for a patient as a person, who is in need of help to live daily
life in the fullest way. On the other hand, the increase of chronic
disease and demographic changes pose a demand for treatment
which society is finding more and more difficult to respond to, con-
sequently entrusting more and more tasks to individuals themselves
and their families. In this context, families experience a condition
of bewilderment and solitude, if not abandonment, further aggra-
vating the fatigue of living every day for the rest of one’s life with
illness: a loss for all of society.
Talking about chronic disease is imperative now more than ever
and this edition responds to this need. In addition to a revision and an
update of the bibliographical references, there is a new part (VI) on
the in-depth analysis of some particularly relevant topics today: the
moment of diagnosis and the following times; the contradictions
and urgent need for psychological support that helps to mobilize
personal resources immediately in the best way possible; the course
of the disease over the years of one’s life cycle, posing different
tasks, with varying levels of difficulty for the ill person; the specific
problems of young people still living with the family and facing
the transition to adult age, separating from parents; the problems
that the disease poses to the children themselves, as children, when
the parents are affected; the use of the Internet and virtual tools,
so widespread today, considering their advantages and risks. The
result is a text I hope is useful for the person living with chronic
illness, and those near and dear –family and friends, also for those
who work every day in health care to guarantee sick people a better
life, and for anyone, in the community and in society, who wants
to better understand a reality that, as citizens, affects us closely and
requires everyone’s collaboration.
xii
Why this book
I wrote this book for myself, because nothing as much as writing
clarifies one’s thoughts, feelings and emotions. I have written this
book for others, because I trust that my reflections may be useful
to others too.
I owe this decision to an unknown young woman we met in
September 2000 in the corridors of the hospital that houses the
specialist center where I am being treated. I was waiting to speak to
the doctor that day and I was happy. Because even this can happen
when you are chronically ill: to be happy with the news, which
for most people would sound like a sentence, that from now on
you will have to give yourself an injection every day. To me that
news seemed like a liberation: in front of me a new hope opened
up and I was happy. I was coming out of three months of suffering
in which I had tried a cure, the one commonly prescribed for my
illness, which had proved fruitless for me: I hardly walked anymore
and every little effort of daily life was beyond my ability. A few days
earlier I received the phone call I had been anxiously awaiting. It
filled me with joy as I heard the words informing me that I could
stop the therapy and start a new and different one! A spot was
available for “compassionate use” of a very expensive drug, at that
time not yet on sale in Italy. The term “compassionate” made one
think more of the sense of superiority towards a lower being than
of genuine empathic participation; I later complained to the spe-
cialist, but he, with the wisdom gained over many years of work,
pointed out to me realistically that unfortunately there is nothing
one can do regarding the bureaucracy, and that was this termin-
ology that allowed the hospital to dispense the drug for free, which,
in the end, was the most important thing.
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xiv Why this book
Even offensive terminology didn’t bother me that day. I could
stop the cure that had reduced me to being at death’s door and
begin another which was understood to have fewer side effects.
Today I know better but then all my hopes were focused on that
new drug. As I came out of the examining room, my hand carrying
a large package filled with packs of the new drug to take home,
I settled in a chair in the corridor waiting for the doctor. A young
woman, also sitting waiting, spoke to me. As I have learned later,
there is often a great need on the part of the sick to speak with
unknown companions of misfortune who meet in the corridors and
rooms of hospitals.
She asked me if I too, like her, had to abandon the usual
treatment to start the daily injection; for her, however, not even the
latter had worked and now she was following another treatment,
very dangerous and with uncertain results, but necessary because
her illness presented itself in a very aggressive form. She told me
about her little girl, how her tiredness prevented her from playing
with her daughter, her tremendous effort in facing everyday life,
her depression that was often confused with tiredness, a vicious
circle in which one sufferance increased another. As I listened to
her and answered her with words of help, I realized that there were
two people inside of me: on one side, I was the psychologist who
listened to a woman in difficulty and answered professionally to her
troubles, on the other, I was a sick person who lived every day in my
skin, albeit in a different way, yet the same experience. The patient
helped the psychologist to understand better and to intervene more
effectively, while the psychologist helped the patient to understand
better and to communicate appropriately with another person who
was so familiar. All of this stunned me by making my head spin dif-
ferently from my frequent dizziness. I understood at that moment
that the double condition of sick and expert in psychology made
me a privileged person, who had special resources to draw on in
dealing with my disease and understanding its events; I also under-
stood that I could not keep those reflections to myself, but that
I should find a way to communicate them to others. Since the word,
especially the written word, was rightly defined as the microcosm
of consciousness, writing and sharing this in writing would have
helped me and others at the same time to be more aware of our
thoughts, feelings, emotions.
A long time has passed and many things have happened since that
September. Disease is also this: making plans and not being able to
xv
Why this book xv
carry them out in the desired time and ways. Because of the falls, of
the suffering, of the tiredness, but also because of the arduous path
that must be done to accept to speak of oneself and one’s illness
with sincerity and yet with sufficient detachment. Writing this book
has been difficult. It would have been much easier to write a psych-
ology book –as I have done many times in my life –on chronic
disease and how to deal with it. I felt that I didn’t have to do this,
but to try to merge theoretical knowledge with personal experi-
ence, science and testimony, and not just for a matter of honesty. It
seemed to me that only this fusion allowed us to truly examine the
disease in its infinite aspects, which only the patient can know, and
at the same time to go beyond one’s own personal and unrepeat-
able experience. I have always found it unwise and self-centered to
simply talk about oneself and one’s experiences, as if our story were
the only reference and the only yardstick to be shown to others. It
is a very fashionable habit today, and not only in TV talk shows.
The readers shall judge if the strenuous attempt to which
I committed myself is successful and of some use to them. Whoever
she or he is, healthy or ill, they too are tied here by a thousand
threads, as Etty Hillesum’s phrase recalls which inspired the Italian
title of the book. Sometimes these threads can be the strings that
limit the path and suffocate development, but they may also be
strong strings that are long and allow us to climb and grow. It is in
this rich interweaving of threads that bind us to others, to culture
and nature where everyone’s life unfolds.
In the book I will always speak of “illness” as inclusive of one’s
gender. This choice is not only motivated by the need to offer an
easy read, which would be impossible with the continuous use of
the two forms (he, she), but also arises from the awareness that,
although nothing more than being male or female structures indi-
vidual identity, there is within disease the prevalence of the person
in themselves, which goes beyond masculinity and femininity.
It is true that in the Western world it is possible to trace, stat-
istically, more frequently the ways among men and even more fre-
quently among women how each react in the face of the disease;
it is also true that the disease can pose specific problems related to
male and female identity, beginning with motherhood or father-
hood. However, in an articulated society like ours, these differences
are intertwined with age, culture, education, wealth, affections, psy-
chological attitudes, cognitive abilities, values, religious beliefs, in a
list that could go on. Each person draws on the complex weaving of
newgenprepdf
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xvi Why this book
these elements in developing one’s own way of dealing with the dis-
ease; their experience, which changes over time, especially in the long
span of time as is that of chronic disease, is unique and unrepeat-
able and cannot be locked in the cages of sexual gender. Although it
is often said that women are stronger, and that they react better to
situations of illness, because they are more accustomed to dealing
with physical suffering and dealing with body transformations, I do
not think that “women” exist as a category, opposite to that of
“men”. Instead, we are concrete people, men and women, male and
female, each with their own disease and their own ways of dealing
with it and, sometimes, of succumbing to it. I therefore consider the
word “sick,” as well as its synonyms, of a neutral gender: everyone
can attribute to them the sexual gender they prefer.
This text is divided into five parts, plus a sixth part added
to the new edition. The first introduces the theoretical principles
of developmental and health psychology which are relevant
for dealing with the topic of chronic disease, with particular
attention to the actions of the sick individual and their role as
the protagonist in their own development and adaptation. The
second part deals with the main issues related to being the agent
of one’s own development in the concreteness of everyday life
marked by illness: focusing on how a life marked by illness is
being addressed –giving meaning to one’s life, rebuilding one’s
identity, being effective in one’s own actions and facing the con-
tinuous presence of stress. In the third part, we examine some
specific aspects of a particular psychological relevance, both emo-
tionally and cognitively, in living the disease, such as the guilt
of the patient, pain and tiredness, depression and loss, but also
optimism and some thought forms such as magic and narrative.
In the fourth, we consider the relationship of care, with par-
ticular attention to trust and empathy, and the problems related
to therapy, its adherence and the use of alternative therapies.
In the fifth part we examine some problems of the patient’s life
relationships: in their relationships with others, especially in their
family and at work, through to their final moments.
Note: All the quotes that appear at the beginning of each part are
from Etty Hillesum’s diary.
