Coping with Chronic Illness

Theories, Issues and Lived Experiences

Silvia Bonino

• Publisher: Routledge
• Year: 2020
• Print ISBN: 9780367421533
• eBook ISBN: 9781000289107
• Topic: Psychology
• Subtopic: Diseases & Allergies
• Index: Psychology

This valuable book combines psychological theories of health with the lived experience of coping with chronic health conditions, focusing on the "ill person" as an actor of their own development. It draws on perspectives from developmental and health psychology alongside the author's personal experience of chronic illness.

Bonino considers all aspects of living with illness, from issues that impact on everyday functioning such as pain and fatigue, to the rebuilding of identity through meaningful new goals and effective actions, and the development of therapeutic relationships. Psychological theories are interweaved with descriptions of lived encounters to center the experience of the person living alongside illness and provide insightful points of reference that everyone could try to use when facing the challenges of chronic disease in the course of their daily lives.

Coping with Chronic Illness is important reading for those living with chronic health conditions, as well as for healthcare professionals looking to gain awareness of the psychological issues caused by living with illness. It is also of interest for postgraduate students of health psychology.

Part I

It is a rather despotic attitude each time you want to remake the world instead of enjoying it the way it is.

Perhaps it is the most difficult thing …: to know how to forgive oneself for one’s faults and mistakes. Above all, to know what it means to generously accept them.

Chapter 1

Healthy and ill

Equal and different

A disease is defined as chronic when it is not curable but does not have an immediate mortal outcome; it can therefore last a very long time, mostly with the tendency to worsen, alternating periods of greater well-being and relapses. Chronic disease is characterized differently than acute disease, given its often gradual and subtle start, the plurality of causes, uncertainty and difficulty of diagnosis – especially in the initial stages – and lack of comprehensive care.

The growth of this type of disease in Western countries continues to increase, but in recent years it is also increasing in the countries of the world that have a low or medium income (LMICS), following the definition of the Organization for Economic Co-operation and Development (OECD). In addition to the most known chronic diseases (such as diabetes, asthma and lung diseases, heart disease, Parkinson’s disease, the numerous autoimmune diseases including multiple sclerosis), others have been added which in the past were rapidly fatal, such as some types of cancer and leukemia, which are now chronic thanks to therapies. At the same time, the life expectancy of many chronic diseases has also increased, so that the sick, both at a young age and during maturity, can live many years in a particular condition, which is living but not in full health. All this creates many limitations in daily living and poses difficult problems often ignored, or not well understood and addressed, both by the patient themselves and by those who are close to them, including health services.

The experience of the chronically ill patient may seem very far from that of healthy people and therefore appear foreign. On the contrary, it is not, and not only because, as has been said, it tends to become more frequent and it can therefore happen to anyone to have a chronically ill patient among their friends or family. The experience of chronic disease has a lot to say to everyone, even to those who are not sick, because it imposes a reflection on the meaning we give to life and our actions in the world, on our way of life, on how we consider difficulties and failures, on how we look to the future. With its daily presence, chronic disease forces us to reflect on life, on its imperfections, on the conditions in which we are called to realize ourselves, on natural and environmental constraints, including social relations. This reflection should not be only for the chronically ill, so they do not succumb to the chronic illness on the psychological and social level, and consequently also physical, given the close ties of these different levels: it is very useful for all of us, because it involves the central issues of our presence in the world. The chronically ill patient can then be considered a particular witness, who through their suffering and daily difficulties provides evidence of the many individual and social contradictions in daily life, as well as the essential issues that we often avoid asking ourselves, when it is healthier to face them directly. For this reason, thinking about living with chronic disease means an active reflection on life that affects everyone, healthy and ill, young and old, able and disabled.

The first question to ask to start reflecting on chronic disease is apparently simple: how can disease and health be defined? The famous definition of the World Health Organization (WHO), which dates back to 1948, states: “Health is a state of complete physical, mental and social well-being and not the pure absence of disease or infirmity.” This definition has been very much accepted and is often cited, given the authoritativeness of its source. Certainly, it had merit, in the years when health was considered in physical terms, putting an emphasis on the totality of the person proposing a broader concept of health, attentive to the well-being of the whole individual (unity of physical, psychological and social). Despite this, definition can be highly criticized for many reasons. The first is, it is so comprehensive that it escapes any translation in operational terms. In other words, how do you decide who is or is not healthy based on this definition? How many and which indicators should be used? These questions cannot find concrete answers; the consequence of this formula remains abstract and devoid of any practical value.

This definition is even more contestable because it proposes a completely unrealistic goal: no one can achieve a condition of complete physical, mental and social well-being in a stable and lasting way. If this is the definition of health, nobody can be said to be healthy, but for a few and fleeting moments of one’s existence. Not even a young person, in full force and biological potential, in an optimal social and economic condition, can live a stable condition of complete well-being. Here is the most serious error of the definition of the WHO: to propose a model of perfect health, of total well-being, which ignores the limit, the defect, the imperfections, the inevitable deficiencies present in each person. Even if it was not the intention of the proponents, the myth of an unattainable perfection is thus cultivated, which inspires harmful tendencies in our society: just think of the obsessive search for beauty and the healthy utopias, on which many profit. We forget that the limits, the constraints and the insufficiencies are the normal conditions in which the existence of each one is realized, however healthy, since human life by definition is imperfect and deadly.

The utopia of physical perfection and complete well-being is based on an egocentric and omnipotent way of reasoning, characteristic of childhood, an age in which desire is confused with reality, awareness of human limits and recognition of our concrete potential are lacking. It is precisely within these constraints, major or minor according to each person, that each of us is living. The chronically ill person, whose limitations can be very great, is precisely the person who every day of his life testifies to the finiteness of the human condition.

The evidence of limits, however, exposes the patient to the risk of refusal: one can, in fact, be scared, because we remember vividly there is a condition of limitation that belongs to everyone, but with which nobody willingly confronts. Moreover, in many cases the chronically ill person is the testimony of the possibility of living even with strong physical conditions, sometimes with real disabilities, indeed demonstrating how to draw from opportunities for realization, albeit with moments of significant difficulty and imbalance. This finding can be for many a positive incentive not to get caught up in everyday difficulties that are less serious, but to transform them into opportunities for personal growth. However, for some people it can be embarrassing, as it reminds them that others, in much more difficult conditions than they may have, manage to realize themselves significantly. Furthermore, it must not be forgotten that toward those who are the victim of an illness, as more generally with a misfortune, there is a defensive tendency not to consider what has happened to them as casual. The idea of randomness appears in fact too distressing, since accepting the case means contemplating the possibility that what happened to another person could also happen to each of us. Against this worrying prospect, a defensive mechanism is mobilized which makes the victim feel responsible, or at least co-responsible, for their misfortunes, for example due to wrong behavior or wrong choices. For this reason, the attitude toward the patient is often ambivalent, and sometimes blame prevails over empathic sharing and participation in one’s suffering. But this is an argument to which we will return.

Chapter 2

Beyond the myth of perfect health

The criticism of the definition of health given by the WHO has led to a new definition of health, more realistic and dynamic, in which there is no dichotomous distinction between health and disease. In this new concept, health is placed along a continuum that goes from a maximum of well-being to a maximum of suffering: each of us in the course of his life moves cyclically along this continuum, oscillating more or less between shorter and longer periods of time between each. If in acute disease this shift is large but temporary, in chronic disease it is long-lasting. Therefore, there may be different degrees of vitality and efficiency on the various physiological systems, as well as varying levels of psychic and social functioning. In this way we overcome the childish and omnipotent vision of perfect health in human beings without limits.

This conception is the result of a long process of reflection in health psychology, to which the Israeli scholar Aaron Antonovsky has made a decisive contribution. Antonovsky is known for his research on survivors in Nazi concentration camps – he defined this model as “salutogenesis.” The salutogenic approach is not based on the traditional pathogenic approach – characteristic of most contemporary medicine – focusing on what makes people sick, but on what allows them to maintain or recover health, despite the biological limits and environmental risk factors. In the case of chronic disease, by definition non-curable and indeed tending to worsening, a salutogenic conception considers above all what allows people to better live their lives to the fullest, despite the limits set by the conditions of the disease.

The sick person and the healthy person are therefore not substantially different: in living both have to deal with limits and opportunities, even if they are at varying weight. How can we understand, in the light of research and psychological reflection, the affirmation that each of us has the task of living? It is clear that it is not simply a matter of vegetating or surviving, but of developing oneself in the best possible way, starting from the set of possibilities and weights that biology, personal history and the present hold for us. Developmental psychology studies show that throughout the entire human life cycle that psychological betterment is possible, therefore not limited to one’s early years, adolescence or youth, as often thought. Neurophysiological studies have also confirmed this possibility of development, based on the characteristics of the human brain, in particular on its plasticity, which allows new synaptic connections to be made and new brain areas to be activated. Above all are the situations of change that constitute the greatest challenges to development throughout the life course: changes that can be normative, or common to many people – such as the birth of a child or retirement – or not expected, not common and surely unusual, such as a lottery win or an illness.

But why is everyone called to do their best within the constraints and possibilities they have? There is an intrinsic reason, linked to human nature, to its characteristics of individuality at the same time biological, psychological and social, and this reason lies in the search for a better adaptation to the surrounding world. When we speak of adaptation, we do not refer to the passive adaptation to situations, as is often understood in common language, but to the active search for an optimal relationship with reality, as biology and psychology teach us. All living organisms try to establish an adaptative relationship with the environment in which they live, that is, a balance between the organism’s action on the environment and the reverse action, so as to guarantee the maximum degree of survival to self and to one’s own species. Intelligence is nothing but the higher form of biological adaptation; it has reached its maximum development in the human being, gifted with thought. For the human being it is not only a matter of guaranteeing physical survival for himself and the species, but of establishing an optimal relationship through which one can live at best on a psychological and social level, and be able to achieve the maximum well-being possible.

The development of individual potential throughout the life cycle is therefore a function of an adaptive relationship with reality. And since the human person is intrinsically social, optimal psychological development does not take place outside social relationships (as in the family and in friendships) and social participation (for example through work). Individual development is therefore not, as is sometimes believed, necessarily in conflict with social development: developing oneself at the individual level also means establishing better social relationships.

What does development ultimately mean? The answer that psychology has given for some time, starting from the notion of development in biology, is clear: psychological development is a change that achieves a better adaptation, that is, a relationship between the person and the environment characterized by an equilibrium increasingly plastic and flexible and at the same time stable. In other words, there is development when there is not only a change in the person, in one’s way of considering and facing reality, but when this change can be defined as “incremental,” because it grasps greater complexity, coherence, substance and stability within the person and their relations with their environment (as happens, for example, in a child with the development of language).

In the relationship between the person and the environment, as in all dynamic systems, a process of self-organization is possible which, starting from simpler structures, allows the emergence of a more complex structure, with a higher organizational level. In this way, a more balanced relationship with the environment can be implemented, capable of dealing with any imbalances (for example, when treating a disease with a drug) and even to prevent them (like when vaccinating); at the same time there can be an optimal realization of a person. In reality, the balance between a person and his/her life environment is never perfect or static: the environment continually introduces elements of imbalance and the person can change. In both cases it is necessary to find a new adaptation. At the lower levels of psychic development, small changes in the environment are enough to alter the adaptation achieved. In a mature person, conversely, there is greater flexibility to cope, without personal imbalance even with significant changes in one’s environment; for this reason, it is said that balance is more flexible and at the same time more stable.

Illness is a dramatic example of a new and unfavorable situation that disrupts life and unbalances all adaptations previously made. In order for a new adaptation to take place, development must take place, despite the greater limitations imposed by a disease. Otherwise, there will be an impoverishment of the person and a regression to more primitive behavioral modalities, with consequent physical, psychological and social discomfort. Disease introduces new and unknown situations, and forces us to abandon habitual and established behaviors; only a flexible way of dealing with these dramatic changes allows you to maintain your psychological stability, the continuity of social relationships and better physical well-being. Taking a closer look, the condition of illness is nothing but one of many challenges – full of obstacles and yet at the same time an opportunity for development, all of which present themselves in the process of one’s existence. This is an enormous challenge, because it exists over time; but not for this reason is it impossible to deal with.

Chapter 3

Protagonist of one’s own development

When it comes to development, it is often believed that it depends mainly on biological factors (such as a good physical constitution) or on environmental factors (such as a rich and stimulating context). It is forgotten that, from the early developmental stages, the individual plays a fundamental role in their own development through the action they exert on their surrounding reality. This differs from that of any other animal due to the specific thinking capacity of the human mind. In millions of years of evolution, the development of living beings, starting from simpler and less organized forms, has reached the human being; in it, intelligence, which as we have seen constitutes the superior form of biological adaptation also present in animals, does not just manipulate reality and respond to stimuli that affect the senses.

The human being is able to go beyond reality: we are capable of thinking, that is, of building symbols (such as those of dreams, imagination, art) and conventional signs (such as those of language and mathematics), on which we can mentally work. Through thought, the person can reflect on the world but above all on ourself, on our actions, on our condition, on our goals: in other words, we can play an active role in our own development. This role becomes more complex beginning in adolescence, in conjunction with cognitive developments specific of this age, in which formal thinking ability is gained, that is, to reason by hypothesis, to make deductions starting from theoretical premises, to perform logical operations without any reference to concrete data.

There is a broad consensus among developmental psychologists in believing that, especially starting from adolescence, an individual can be an actor of their own development. The actions of an individual are capable of directing development because they have a positive or negative effect on an individual themself, be it on a biological and psychic level, and within their environmental context. In other words, every human being through thought and action exerts a continuous influence both on their own body and on their psyche, as well as on the surrounding physical and social world. On a biological level our actions (for example, deciding to learn a foreign language or to play a musical instrument) influence the structure of our brain itself, and their effects affect others and the environment in a lasting way, even beyond the individual’s life itself (for example, by passing this learning on to someone else). Even apparently trivial decisions, such as traveling, can have significant effects on a person, who can derive new physical well-being and new intellectual and social knowledge, consequently modifying their relationship with life.

Development therefore is not on...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Preface for this edition
• Why this book
• Part I
• Part II
• Part III
• Part IV
• Part V
• Part VI
• Bibliography
• Index