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Coping with Cancer: 10 Steps Towards Emotional Well-Being
Andrew Kneier, PhD, Isadora R. Rosenbaum, MA, and Ernest H. Rosenbaum, MD
Coping refers to the attitudes and behaviors that you use to maintain your emotional well-being and to adjust to the stresses caused by cancer. Different people cope in different ways, and some ways of coping are more successful in promoting a person's emotional well-being and psychological adjustment than others. Currently, you might be coping with treatments and their side effects. Perhaps you are also coping with a recurrence of your cancer or with pain and disability. Your life has been disrupted and perhaps altered by your illness, and you are dealing with the effect on your loved ones of all that is happening to you.
When someone had cancer 50 years ago, there was little discussion of how he or she was coping. The person just dealt with it. In the last 25 years, however, as cancer becomes a chronic rather than terminal illness, the notion that patients are coping with their illness has received an enormous amount of attention by health care professionals. Even the federal government got involved and, in 1980, the National Cancer Institute published Coping with Cancer. In the 1990s, over 2,500 articles on some aspect of coping with cancer have appeared in medical and mental health journals.
We attempt to summarize the vast amount of research on coping with cancer by highlighting 10 coping strategies that we believe may help you. We have also drawn upon the experience of the many patients we have cared for over the years.
Coping strategies reflect the process of coping and the ways of meeting goals and challenges. When you are dealing with cancer, you face many goals and challenges. Some of these are medical and physical, some are emotional, and others are interpersonal and spiritual. In one way or another, they all have to do with the quality of your life, which has been threatened and disrupted by cancer. You have adopted some strategies for pursuing your goals and meeting personal challenges that promote your recovery and enable you to remain emotionally intact. You are able to carry on, perhaps deepened and changed by your cancer experience. This is what coping is all about.
These coping strategies are not applicable to all patients. This is because the method of coping that works best for one person may not work so well for another. What works for you depends on your personality, your current life situation and how you have coped in the past. Moreover, the goals and challenges you are facing are personal to you, and many of these are dictated by the nature of your illness and the medical treatments.
Furthermore, coping with cancer is a process that goes on over a period of months or even years, and patients use different strategies at different times, depending on stage of their illness. It is nonetheless true some strategies, in general, work better than others. More often than not, these strategies are associated with an optimal degree of psychological adjustment.
The positive coping strategies we discuss below can promote your emotional well-being when dealing with cancer, and thereby enable you to feel more energetic and resilient. These effects may also enhance your immune system's response against cancer cells. The coping strategies suggested here are for all patients, whether you are newly diagnosed, undergoing medical treatment or dealing with the many stages of cancer, including terminal cancer.
1. Facing the Reality of Your Illness
Patients respond in different ways to their diagnosis, the initial medical work-up, subsequent test results and the implications of all that is happening to them. Many patients respond by confronting the full reality of their illness. They ask pointed and brave questions about the seriousness of their condition and the pros and cons of the various treatment options. They read up on these matters on their own. They react as if they are strongly motivated to know what they are facing. This way of coping has been found to promote their psychological adjustment.
Other patients react as if the realities confronting them are too much to deal with and they therefore retreat into a state of denial. It sometimes seems that a patient in denial is saying, in effect, I can't cope with all this. Yet the denial is a way of coping. It protects the person from being overwhelmed. But it can also prevent a person from coming to terms with their illness and getting on with other constructive ways of coping. It is therefore associated with a poorer psychological adjustment.
Denial is often a positive coping strategy because it enables the patient to gradually face the reality of his or her illness, in a piecemeal manner, without feeling overwhelmed, and feeling more supported by loved ones. In our experience, patients seldom remain in denial; it fades away over time, as indeed it should, at least for the good of overall adjustment.
As you read this, you might ask yourself how much you really know about your cancer and your individual case. Are there any relevant questions that you haven't ask? Have you avoided learning more about your illness by not reading about it? You might want to become more proactive in seeking information; the evidence indicates that this will help you.
2. Maintaining Hope and Optimism
After facing the reality of your illness, it would be good to feel optimistic about the future course of events. Not surprisingly, patients who are hopeful and optimistic show a better adjustment to their illness than patients who are pessimistic. It is important, however, that your optimism be realistic; otherwise it represents denial or wishful thinking. In most cases, there is a solid and realistic basis for a certain degree of hope and optimism.
Most patients tell themselves to be positive, but for many, this is easier said than done. There are several reasons for this, some of which may apply to you. Being optimistic means that you may feel lucky. However, you were unlucky enough to get cancer and may now feel that you are an unlucky person. You would not expect, therefore, that you would now enjoy the good fortune of a long remission or cure. You might feel just the opposite: that good luck is unlikely for you.
Optimism can also seem presumptuous: after all, other patients with your diagnosis have not done well, and you might think, What right do I have to expect to recover? Your optimism could also make you feel that you were not worrying enough about your cancer--that is, that you were not giving cancer its due, that you were acting too boldly or confidently in the face of it, and that you were therefore asking for trouble, as if the cancer might come back to teach you a lesson. Finally, if your prognosis is more favorable than for other patients with your type of cancer, you may feel that it is not right to enjoy this good fortune or to take advantage of it (that is, by being optimistic and going on with your life in a positive and constructive manner). Despite these obstacles, you should try to feel as hopeful and optimistic as the medical realities of your case allow. This leads to our next point.
3. Proportion and Balance
Your emotional response should not only be one of optimism and hope. It is also appropriate and helpful for you to be upset and worried, at least to a certain degree. In most cases, the medical situation provides a basis for hope and a basis for worry. The statistics indicate a certain chance of survival, but also a certain chance of dying of cancer. Of course, the chance of survival and the risk of dying vary greatly from case to case. Ideally, your emotional response would take both aspects into account: you would experience a degree of hope that was proportional to the positive survival chances that applied to you, but you would also experience a degree of worry that was proportional to the mortality rate in similar cases. That is, you would not feel overly worried, upset, or preoccupied, but neither would you feel overly cheerful, complacent or optimistic.
Alternatively, the nature and intensity of your positive emotions should be tempered by, or take into account, the possibility of death. If you are ignoring this possibility, then your optimism involves a denial or minimization of this threat; in the long run, this will not help you. It is better to acknowledge this threat and to work through the negative emotions that stem from it. In short, it is best if your positive and negative emotions balanced each other out such that you would be neither overreacting nor underreacting to the medical realities facing you.
A number of studies have found that patients who maintain this kind of mixed emotional response--well-proportioned to the realities of their illness and well-balanced--enjoy a better psychological adjustment than patients who feel too pessimistic or too optimistic. They feel that they are coping well with the uncertainty inherent in their medical condition, neither dwelling on nor denying their legitimate fears, and yet keeping their sights set on getting better. Again, all this is easier said than done.
4. Expressing Your Emotions
People differ in the way they communicate their feelings, and in our society, women are generally better at this than men. Take stock of how well you express what you are feeling about your illness. If you feel that you are not doing well in this regard, we encourage you to do better. Many studies have shown that patients who express their emotions and concerns enjoy a better psychological adjustment than people who tend to suppress their feelings or keep quite about them.
Emotional expression is usually helpful because it gives you an outlet for your feelings, a means of working through them, and an opportunity to obtain better emotional support. It can be an enormous help just to know that your feelings are understood by others and seen as valid, but this requires open communication on your part. If you tend to keep your feelings to yourself, it is probably because you have learned to do so. (You were not born with this tendency.) Your earlier experience may have taught you that sharing your feelings led to negative consequences. Perhaps your emotions were not validated by others, or you were criticized for expressing them (Children are to be seen but not heard, Big boys don't cry and so on). You may have felt that your emotional needs were an imposition on others, and that your role was to take care of the feelings and needs of others rather than expressing your own. It is not uncommon for cancer patients to hide their true feelings as a way of protecting their loved ones.
Some people do not express their emotions because they are not very adept at even paying attention to what they are feeling. They seldom stop and check in with themselves and try to identify the feelings and concerns that are weighing upon them. In this process, we learn that our emotions are important and valid and thus worthy of attention and expression.
As you probably know, cancer patients are consistently encouraged to keep a positive attitude. This can make you feel that there is something wrong or dangerous about your negative emotions (fear, sorrow, anger). Research suggests just the opposite: experiencing and expressing such emotions is psychologically and immunologically healthy.
Finally, timing is important. The period after your diagnosis, when you are learning about your illness and undergoing the initial work-up and treatments, may not be the right time for you to be taking stock of all your emotions. Your plate is already very full. You may need to put your emotions aside for a while as you attend to everything else. Moreover, it will benefit you most to express your emotions with the right people and when their support is available to you.
5. Reaching Out for Support
The amount of support available to cancer patients varies across the country, and patients themselves differ in how much they tend to reach out and take advantage of the support. Those patients who have at least a few loved ones available for close emotional support and who call upon their support show a better psychological adjustment to cancer than patients who are largely alone or tend to go it alone in coping with their illness.
Reaching out for support often means just expressing your feelings and concerns to others--which, as we saw, can be a challenge for many patients. It can also mean that you ask your loved ones for the type of support you need most, and this requires that you first ask yourself what that support might consist of. You will probably identify ways that people can help you that have not occurred to them.
For example, family members and friends often assume that they should provide encouragement and stress the positive (this is sometimes called the cheerleading role). Patients generally appreciate the positive intent behind this, yet it can put a damper on patients sharing their fears or sorrows. Often, patients would rather hear that others understand how they feel, regard these emotions as valid and will stick with them regardless of what happens. You might need to tell people that. On a more concrete level, you might ask others to accompany you during a medical appointment, pick up the kids after school, look up information for you (the Internet is a wonderful resource for this) or prepare a nutritious meal for your family.
If you find that you are not reaching out for the support that is available, reflect on the reasons for your stoicism. You may be minimizing your own needs for support, perhaps because you pride yourself on being independent and self-sufficient. It may seem to you that others would be bothered by your need for support or help and resent your imposing on them. More often than not, this is an assumption based on earlier experience. Perhaps you have found in the past that it is best to rely on yourself. While you should continue to draw upon your own internal resources, you should also realize that other people can and want to assist you in meeting the challenges of your illness, and you should give them a try.
Obtaining support often means joining a support group, and research has shown that such groups help patients to cope with and adjust to their illness. Support group members find that they have a great deal to offer each other in the way of mutual support and encouragement, discussion of common problems and ways of coping, and sharing of medical information. Groups also offer a safe and supportive haven for confronting one's fears. The American Cancer Society (http://www.cancer.org) office or hospitals specializing in cancer treatments in your community will know of support groups that you could join.
6. Adopting a Participatory Stance
How much initiative do you take to actively participate in getting well? Some patients tackle their cancer head on. They have a strong fighting spirit, and they find ways of putting it into action. They go out of their way to learn about their illness and the options for treatment. They pursue the best treatments available and also consider alternative or holistic approaches. If you are like this, you would strongly agree with the statement A lot depends on what I do and how I take part. Research has shown that patients who respond in this manner have less emotional distress than patients who respond in a more passive manner or try to avoid their situation.
Patients who adopt a participatory stance believe they can make a difference, and they put this belief into action. They therefore feel less helpless and vulnerable. This is a main reason why their emotional state is better. This belief in yourself as an active and effective agent is called self-efficacy, and research has consistently documented its positive emotional effects.
Patients who are coping in this way usually ask their doctors about treatment options and alternative therapies that their doctors had not mentioned. Instead of only following what their doctors say, they come up with ideas of their own. Also, they usually embrace some ways of promoting their physical well-being that go beyond the normal recommendations. These include dietary changes, increased exercise, stress reduction, vitamins, herbs, yoga, acupuncture, meditation, prayer, guided imagery and others. These patients often pursue new, experimental therapies that may offer additional hope. In all these ways, the patient is actively participating in an effort to recover fully or (if that is not realistic) to maintain the best physical health possible.
In contrast to those who feel they have an active role to play, some patients adopt a resigned, fatalistic attitude. One reason for this attitude is that it lets the patient off the hook for any extra effort that could make a difference. We have heard patients say, What will be will be. The research on coping has consistently shown that this attitude is linked to a poorer psychological adjustment to one's illness.
7. Finding a Positive Meaning
While the diagnosis and treatment of cancer is an awful experience in many respects, it can also be a challenge and even an opportunity for positive change. In response to their illness, many patients step back and take stock of who they are and how they have been living. They reflect on their ultimate values and priorities, and often identify changes that are warranted (and perhaps overdue) in their lifestyle and personal relationships. This is often called the enlightenment or gift that comes with cancer, or the wake-up call aspect of cancer. Patients who embrace this aspect of their cancer experience have been found to be especially well adjusted and better able to deal with the many trials and disruptions caused by their illness.
It is often noted that growing old forces us to pay attention to what is important in life. The same can be said of a diagnosis of a life-threatening illness. What is important to a person often stems from their spiritual or religious beliefs. Even if you are not inclined toward spirituality, you probably have a basic philosophy of life and your life journey that highlights for you the importance of certain goals and values. These are important because of what they mean to your personal integrity and fulfillment.
To what degree does your lifestyle demonstrate these goals and values? This is a question for all of us, but it can become especially compelling if you are dealing with cancer. For many, illness inspires them to pay more attention to what matters most. This could mean spending more time with family and close friends, making a greater contribution to the causes you believe in, showing more appreciation for all that you have and are, bringing forth aspects of your personality that have been suppressed, taking better care of your physical and emotional needs and seeking to be more honest and true to yourself. In all these ways and in many more, your illness can become an impetus for positive change.
Sometimes the idea that there is a message or lesson in one's cancer implies that the person needed to get cancer and perhaps even got it for that reason. This kind of self-blame is completely unwarranted, and it fosters feelings of guilt and depression. A more psychologically healthy response was voiced by one of our patients when she said: "It's too bad that it took cancer to make me see things a bit more clearly, but you know, some positive things have come out of it for me."
8. Spirituality, Faith and Prayer
Most people in our society have some fundamental spiritual beliefs, and these beliefs can be called upon for help in dealing with cancer. Patients who do so benefit in a variety of ways: they have a greater sense of peace, an inner strength and an ability to cope, and show an improved psychological adjustment and quality of life. These benefits derive especially from the perspective offered by your religious faith or spirituality and from the power of prayer and religious ritual.
All of us, whether we have cancer or not, are challenged at some point with the question of how to respond to our vulnerability to disease, suffering and death. For some, these realities lead to a kind of existential despair. Others embrace a perspective that goes beyond these realities, or that penetrates more deeply into them, to find meaning and value that transcends their individual existence or plight. This is the perspective offered, in one form or another, by the world's religious and spiritual traditions.
This perspective can help with the Why me? question. It is difficult to reconcile how an almighty, loving and just God could allow cancer to happen to a good person. Patients often believe that the illness is a punishment. In our culture, we often assume that what happens to a person is somehow linked to what the person deserves.
The emotional turmoil and doubt that stem from these issues can be soothed by themes of consolation and forgiveness that permeate the world's major religions. In the Judeo-Christian tradition, it is emphasized that God is with us in our suffering, providing the grace we need to endure rather than doling out suffering to those who deserve it.
Through prayer and liturgy, patients are able to connect to the core of their faith and to their religious community and derive the solace and fortitude they need to cope with their illness. Prayer can also have healing effects--most certainly in healing one's soul, but perhaps also in healing the body.
9. Maintaining Self-esteem
There are many ways that the experience of cancer can harm a person's self-esteem. One of these is the stigma of having cancer--that is, that it can imply something bad about the person who has it. In addition, many of the sources of your self-esteem can be threatened by cancer and the effects of medical treatments: your appearance, your physical abilities and activity level, personal attributes (such as being healthy and independent) and your role and identity within your family or in your work life. One of our breast cancer patients lamented: "I used to take pride in how I looked, and in being a good mother and working, helping to support the family. Now look at me."
These threats to your self-esteem pose a danger and an opportunity. The danger is depression and, with that, the weakening of the will to live and the resilience you need. The opportunity lies in finding additional sources of self-esteem within yourself. For example, you might take pride in the way you are coping with your illness. You might have a new appreciation for how much you are loved--not because of what you do or how you look but because of who you are. Perhaps it has been difficult for you to depend on others because your independence has been overly important; you might now take pride in your ability to express your needs and ask for help. Perhaps your spirituality has been deepened by your cancer experience, and this can also help to renew your self-esteem. The overall emotional well-being of patients is enhanced when they discover or develop new sources for positive self-regard.
You can also protect your self-esteem by maintaining your normal activities and roles as much as possible. Your illness does not suddenly define you as a cancer patient, as if that is your new identity. Patients who continue to do the things that are important to them, to the extent possible, enjoy a better psychological adjustment than those who too quickly abandon these roles and activities or expect too little of themselves because they have cancer. One study specifically noted that patients need to deal with the cancer but also to keep it in its place.
10. Coming to Terms with Mortality
It may seem that a major challenge when dealing with cancer is to fight against the possibility of death rather than work on coming to terms with it. Certainly the philosophy and technology of modern medicine are preoccupied with this fight. The practitioners of alternative therapies also stress their healing potential. From all quarters, cancer patients hear that they must maintain hope, keep a positive attitude and try not to give up. It seems that everything revolves around getting better. And yet many patients die of cancer, and even those who do not are living with the possibility that they might. Very little support is offered to patients coming to terms with this possibility and reaching some sense of peace about it, and not feeling that it is a failure and outrage to die.
We are not saying that you should accept the possibility of dying, and therefore not rail against it and do all you can to prevent it. Nor are we suggesting that if your cancer progresses, and death seems inevitable, that you should accept it then. Facing death is profoundly personal, and inherently difficult: our survival instinct runs counter to it. The loss of life and everything that entails seems unbearable, and for most of us dying is almost too dreadful to think about. But it is possible to come to terms with death. And patients who do, enjoy the peace that acceptance brings.
The majority of newly diagnosed patients have a favorable prognosis. You might think that it would be better to confront death when the time comes. But even now, you are facing the possibility of dying of cancer and striving to prevent or delay it. This fight for your life is bound to be filled with fear, desperation and inner anguish if you are not also striving, in your own way, to come to terms with this possibility. This does not mean that you dwell on it; it means that you deal with it and then go on. It is always wise to review your personal and financial affairs. Having done so, you will be all the better at living in the fullness of life, one day at a time, rather than in the dread of what could possibly happen.
The work of coming to terms with death can draw on our religious, spiritual or philosophical beliefs about what is important in life, and why. These beliefs can provide meaning and purpose to life, and therefore consolation when facing death. Many people have been able to feel, and to know, that their life has been about something important and of lasting value. This is one of the major ways that our religion or spirituality can help us.
We have found that most of our patients are struggling with these issues and longing for a sense of peace, but they are forced to do so quietly because they have so little support for this important inner work. Many patients abandon this effort, and come to feel hopeless about it. We encourage you to go forward, through reflection and reading in the religious or spiritual traditions that appeal to you. One book that many patients have found helpful is The Tibetan Book of Living and Dying by Sogyal Rinpoche.
The Benefit for Patients
The coping strategies we have discussed are not right for everyone, but there is good evidence that they are generally helpful to patients who are dealing with cancer. The bottom line is that they help patients feel better and stronger. Patients feel better because they are facing their illness squarely and working through its emotional impacts, and yet also keeping a perspective on it so that it does not define them or take over their life. Through all the trials and challenges that cancer can bring, they are keeping their wits about them and are able to carry on. They feel stronger because they have support, from other people and from within themselves. They have taken stock of their most cherished reasons for living, which strengthens and sustains them in their fight against cancer. And yet they also feel that their survival is not the only important objective; the quality of their lives and relationships, the values they live by and their spirituality also deserve attention and effort. They have the peace of knowing that their death from cancer, if it comes to that, will not obliterate the meaning, value and joy that their life has given to them and their loved ones.
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