Having a physical illness affects us psychologically in two main ways. On one level it is an individual matter that can affect how we think, behave and feel, both emotionally and physically. On another level it affects our relationships with people around us, our patterns of support and our life roles.
A health problem does not have the same effects on everyone. There are factors that influence how people react to, cope with and adjust to becoming unwell. In this book we will support you in gaining an understanding of the psychological effects of living with acute or chronic medical conditions and show you ways in which to adapt and cope better with the challenges.
Hardly a week goes by without some mention in the media of promising advances and breakthroughs in the treatment of certain medical conditions. Medical science in our generation has developed in unprecedented ways. Many cancers are treatable and some are even curable. HIV disease, which 30 years ago was almost inevitably fatal, can now be managed as a chronic, lifelong condition on an outpatient basis, theoretically affording a normal lifespan if diagnosis is made early and the treatment is well tolerated. These and many other examples of exciting and welcome developments in healthcare, however, do not always convey any sense of the psychological impact of this type of condition on those who must live with the disease.
Also, as mentioned above, these conditions have an impact not only on the individual but also on that person’s family and other caregivers, and therefore the true psychological impact of chronic or acute health conditions ripples out far beyond just the one person.
Some medical advances arrive too late to benefit those who are already living with a particular health condition. For others the advances may be of limited benefit because of the costs of healthcare, the side effects of treatment, additional medical problems that may have developed as a consequence of the original condition and, in some circumstances, rationing in healthcare. Also, the fact that some of these advances are a result of laboratory studies but have not yet been proven in real-life situations means that, for practical purposes, the treatment may not yet be available to all patients.
Any medical condition can impose significant physical, emotional and practical challenges, but those which are regarded as acute (sudden onset) or chronic (long-developing) can be some of the hardest to bear. A diagnosis of a serious medical condition can wreak havoc in our lives and affect all aspects of our functioning and daily living. Work, recreation, relationships, routines, habits – and of course how we feel in ourselves – are all likely to be affected. As well as being life-changing, diagnosis of a medical problem can, in some cases, also signify that life itself is threatened.
Of course, every person’s situation is unique, but in our professional experience the psychological effects of illness or chronic health con-ditions can be as hard to bear as the physical effects. This is not an overstatement – it rather reflects the results of several scientific studies of coping with illness, as well as our own clinical experience of working with people who have a broad spectrum of medical conditions. Most medical conditions in the acute and chronic categories also have a negative impact on self-confidence, mood, identity, capability, sleep and capacity for sexual intimacy or even functioning. These are just a few of the possible psychological effects which we discuss in this book.
Different health issues affect people in both obvious and unexpected ways. Exactly what effects they have will depend on your age and stage of life, your gender and your role in the family, past and current patterns of relationships within your family, the nature of your medical condition and how it affects you, your relationship with professionals such as doctors, nurses and other caregivers, and your ideas about and experiences of coping with being unwell, as well as personal circumstances such as your finances and home set-up.
Physical reactions to health problems cannot always be separated from psychological reactions. Certain conditions, or indeed the effects of the treatment of these conditions, can have profound and even scarring psychological consequences. The medical condition itself may, for example, cause you to be constantly tired, unable to sleep in spite of deep fatigue, in pain or suffering from itching, visual or auditory changes or discomfort, stomach problems such as constipation or diarrhoea with all the attendant embarrassment, inconvenience and restrictions, or difficulties with speech, attention span and everyday comprehension. These and many other effects may stem directly from your medical condition or from the treatment for that condition, and can on their own weigh you down psychologically.
We recognize that the challenges of illness can sometimes leave you feeling confused and overwhelmed. Your self-confidence may plummet and you may be emotionally upset. Each of these reactions can in turn affect your ability to cope. These challenges and physical symptoms may also affect relationship patterns with loved ones, with friends and indeed with professional caregivers. We have written this book with you and your experiences in mind. It is designed to help you cope better with your circumstances.
Our starting point is first to help you to develop an understanding of how acute or chronic illness can affect people. We highlight some specific and commonly occurring physical and emotional symptoms. Further on in the book we will focus on anxiety and depression, as these are arguably the two most commonly presenting psychological difficulties that people describe.
The book also addresses how to improve the support around you in the form of family and friends, and we extend this to dealing with your communication and relationship with professional caregivers as well.
We cannot hope, of course, to provide solutions to every problem you might encounter. However, with our extensive clinical and research experience we will share with you ways in which you can better understand and cope with some of the psychological effects of chronic and acute illness.
In the face of uncertainty about the course of your condition, for example, you might predominantly experience low mood and feelings of hopelessness, or perhaps struggle with worry and anxiety. In this book you will be encouraged to reflect on identifying your own unique presenting problems and responses to illness and to draw on the techniques and skills described in this book which are most relevant to you personally.
A message of hope
This book offers an empowering self-help approach derived from extensive current and evidence-based practice. It focuses on practical solutions to managing health conditions and coping with the experience of being unwell.
The book also focuses on living better with – and getting on top of – the emotionally challenging aspects of living with illness. We aim to convey a message of hope that, even when confronted with life-challenging situations and serious health difficulties, it is possible to approach your unique situation with greater confidence if you have appropriate knowledge, help and accessible social and professional support. This can alter the impact that your condition has on you, physically and emotionally, as well as on your relationships. We believe that better support improves health outcomes and we aim to arm you with strategies and techniques to improve your own coping.
So many of our clients with serious health conditions, chronic and acute, and those who work with our colleagues in countless clinical centres worldwide, report feeling that their illness has removed control from many aspects of their lives. Obviously this is a seriously unwelcome change for most people. However, by developing a clear and deep understanding of your psychological reactions, you can help yourself to regain a sense of control and take greater charge of your own care, your treatment, your coping and your emotions.
The course, treatment and medical outcome of your condition are not things you will always be able to control. You may find yourself relying on the input and intervention of medical specialists and other professionals. However, coping with a serious medical condition is as much about managing the psychological aspects as the practicalities, and of course it is the psychological factors which you can more directly influence through how you choose to live with your situation.
While it is necessary to trust in medical professionals to monitor, advise, assess and treat you, your psychological response is something you can work on yourself – and indeed is something that ultimately only you can do. Managing your thoughts and feelings can improve your mental health, and positive psychological responses have been clearly demonstrated to improve health outcomes, so this is something valuable that you can contribute to the successful management of your health condition.
Managing and improving your psychological response and wellbeing can be started on your own, in the context of family relationships and with the support of qualified professionals such as psychologists and counsellors. This book addresses how, in all these contexts, you can better understand and take charge of the way you cope psychologically.
Taking greater charge of your feelings and the management of your condition can be as simple as gaining the confidence to question your doctor about your treatment or possible side effects from some prescribed medications. It can also be as complex and sensitive as asking about the possible course of your condition, the likely outcome and, if the condition is untreatable, what may lie ahead for you and how best you can prepare for this. Taking charge of your health in this way can help you to regain a sense of control and mastery, rebuild your confidence and improve your wellbeing. It can also in some cases help you to overcome specific symptoms such as sleep or eating difficulties if, for example, these are linked to stress and worry.
We aim to provide a practical and helpful handbook for people adapting to the emotional challenges of living with acute or chronic health conditions. Where possible we also point you towards other sources that can help.
This book draws primarily from cognitive behavioural therapy and mindfulness-based approaches. These are two of the most prominent and modern psychological approaches, particularly in the NHS and in time-limited therapy. We will now briefly outline these approaches.
Cognitive behavioural therapy
Cognitive behavioural therapy (CBT) is a modern, practical and evidence-based model. It has been shown to be effective when working with many psychological conditions and experiences, including adjusting to being unwell. The approach is upfront and practical, just as it is when we meet people face to face in counselling sessions. The model suggests that in any given situation there are four aspects dictating how you experience that situation.
- Thoughts This is your mental activity, which is sometimes referred to as ‘cognition’. What is going on in your mind? What are you focusing on? Where is your attention? It involves any images or stories your mind is telling you about the situation and includes memories, fantasies, worries, ideas, judgements, problem-solving and so on.
- Feelings This is your emotional experience. Usually we can name our feelings using one word, such as ‘happy’, ‘sad’, ‘angry’, ‘jealous’, ‘frightened’.
- Behaviour This relates to what you are actually doing. If people were watching you, what would they see you doing? For example, are you looking up symptoms on the internet, calling friends for reassurance, lying in bed, going for a walk …?
- Body This relates to how you are feeling physically. What is your physiological experience? Are you in pain? Are you hot or cold? Tired or agitated?
All these aspects are interconnected and all affect each other. For this reason you can develop patterns and cycles that can be self-perpetuating. Some of these patterns can be very unhelpful and can add considerably to any suffering that you are already experiencing, but the good news is that if you change one aspect of the cycle then the whole cycle changes. When you start to understand the cycles and where you tend to get stuck, you can plan how to change them and develop new and more helpful and adaptive patterns that reduce your overall experience of distress. Figure 1.1
illustrates the interactions between our thoughts, feelings, behaviour and body. We will draw on this diagram throughout the book to explain examples of common unhelpful patterns.
Figure 1.1 Interactions between our thoughts, feelings, behaviour and body
In the last 20 years psychologists and other researchers and practitioners have been developing programmes in which people are taught mindfulness skills. These skills, which can be used to help cope with pain and suffering, help us respond differently to internal and external experiences, and there is evidence to show that they are effective.1 Researchers have studied the efficacy of mindfulness skills in the management of chronic pain and the suffering and stress of illness. Indeed, they report that mindfulness meditation can be as effective as painkillers and can enhance nature’s healing powers within the body. Mindfulness has also been shown to reduce significantly anxiety, depression, insomnia, irritability and fatigue that can come from chronic pain and illness.2
What is mindfulness?
Mindfulness is the opposite of ‘automatic pilot mode’. Do you ever notice that you can be walking down a street but your mind feels a million miles away? You might be thinking about your appointment with your doctor tomorrow or an argument you had with your partner last night. Wherever your mind is, it is certainly not in the present moment. Many of us live most of our lives like this, with our attention focused on either the future or the past. And in the meantime we miss what is happening right now. Mindfulness is about being in the ‘here and now’. Rather than ‘doing’ all the time, it is about ‘being’. It is about letting go of our struggle with what has been or will be and accepting what is happening in this moment. It offers a helpful way of letting go of unhelpful patterns of thinking, feeling and behaving and has been shown to improve psychological wellbeing and...