Coping with Serious Illness: Sandra Haber, Ph.D., Answers Your Questions
Dr. Haber is a psychologist in private practice in New York City, an associate clinical professor of psychology at the Derner Institute at Adelphi University and a fellow of the American Psychological Association. She has edited Breast Cancer: A Psychological Treatment Manual (Springer) and co-authored Prostate Cancer: A Guide for Women and the Men They Love (Dell).
Q. How important is it to be in good health both physically and mentally?
A. When people are ill, it's important to deal with the illness on the physical, emotional and spiritual level. If you treat just the body, you short-change yourself. The way you handle the entire experience is critical for achieving wellness.
We don't know exactly how it (the mind/body connection) works. We know there is a connection. We have biochemical evidence of that. It may not be causative as much as an influencing relationship. For example, we know that the sun doesn't cause a flower to grow, other conditions are essential, but we do know that the sun influences the growth of the flower.
As a psychologist, we can not promise extended life, but if the mind is in good shape, the quality of life is better. That part is absolutely certain and in fact, in some cases life may be longer.
Q. It seems as though there's pressure on people to have a "positive attitude" in order to cope with their illness. What is your take on that?
A. If someone was diagnosed with cancer and had only positive attitude, I would be worried. The public seems to be under pressure to have a good attitude. There's a huge movement in popular culture to have that and it really does a patient a disservice. It's difficult, if not nearly impossible to maintain a positive attitude during a life-threatening illness. What we mean by a "positive attitude" psychologically is that there is a desire to fight the illness, a means of coping with the illness. Feeling sadness, anxiety and depression with the illness are the normal reactions. Positive attitude is not really accurate -- a fighting attitude is more accurate.
Q. What are some areas where psychology can help those patients diagnosed with a serious illness?
A. There are six areas where psychology can help: finding the best fit in the choice of medical interventions, forming a support group to help the patient with the tangible and intangible tasks of illness, dealing with the needs of the secondary patients such as family and friends, reducing the side effects of medical treatments (like chemotherapy), managing pain, and helping patients cope with the "aftercancer experience."
Q. Why is it so important for patients who are diagnosed with a chronic illness to deal with their feelings at an early stage?
A. People often come to see me after reading in a book that tells them that if they're upset about cancer, that emotion will kill them. That's not accurate. Being upset about having cancer is perfectly normal and reasonable.
Patients need to feel a sense of mourning, loss and fear -- all of that is reasonable. The goal is to let them experience it and move through it then they can emerge stronger and are more likely to manage their negative emotions. If they feel they have to cover up every negative emotion, they can't get beyond those feelings.
When we confront our own mortality, each person is different. Most of us don't deal with it until we, or someone we know, has a chronic illness. But those who are forced to face their mortality often experience many benefits. For example, they often choose more carefully how to spend their time or they may achieve a greater joy with the life they do have. It's important for people with cancer to know that in general, this illness is not a death sentence. Many patients with cancer will go into remission. It's often helpful for patients to talk to survivors of the illness so they can meet people who have gone through the process and have come out as survivors.
Q. What is the first reaction most of your patients have when they have been diagnosed with a serious illness such as cancer?
A. The first reaction with cancer is a fear for loss of life. 'Cancer equals death' is the first thing people go through. Am I going to die? After that issues begin to differ for each person on what happens next. What treatment do I undertake? How do I make a choice? Will it be effective? What else can I do to conquer my illness?
Q. What type of confusion are patients faced with?
A. I had one young breast cancer patient who came to me after seeing seven surgeons ... four of them recommended a lumpectomy the other three said mastectomy. She was stunned by the lack of agreement. A lot of women come in and after they get over the shock of, 'I have cancer,' having to decide what to do about it. Surprisingly in medicine, there can frequently be little consensus. In many cases, the first step is helping the patient decide what to do. We can ask the patient to imagine: If you had a mastectomy, what would that be like? What does that mean to you? For some women, it means safety from cancer; for others it means disfigurement. Imagine five years later your cancer recurs; what would that experience be like?
If you had a lumpectomy and then had a recurrence, would you feel that you should have chosen the mastectomy? For many women, they believe that if you have the breast removed, you don't have cancer. Depending on how a woman responds can reveal the best treatment choice for her.
Another example is prostate cancer. You can have a PSA test, which enables a physician to make an early diagnosis. But after diagnosis, the course of treatment for prostate cancer is often unclear. Some physicians believe that you absolutely have to have the prostate removed. But side effects to surgery include urinary problems and impotence. Some physicians recommend radiation, but this too has side effects as do the other treatment choices of hormone therapy or watchful waiting. The patient is initially confronted with a barrage of possibilities. How in the heck do you decide? The patient has to become the scientist. That's really the initial portion of most diagnoses. This even extends to chemotherapy. If recommended, what does that really mean? Will it really benefit you? Can you tolerate the side effects? There are a host of problems and alternatives out there that the psychologist can help the patient explore.
Q. There are many options available to cancer patients as to what treatment they should have. How can talking with a mental health professional best prepare them for making that choice?
A. Overall, talking to a psychologist is an empowering process. Sometimes patients have to fight for what they want. Sometimes they need to push a bit. Most patients are uncomfortable pushing and asking questions because they're not the expert and it feels disrespectful.
Also, psychology is helpful for coping with the side effects of treatment. Some people give up chemotherapy, even though it may threaten their life, because they can't deal with the side effects. One of my patients has a self-hypnosis tape that she takes to chemotherapy. She listens to the tape and it helps her get through it.
Too often, a patient's psychological needs throughout the treatment regime are not taken into account. Making an educated choice with the patient means weighing both their psychological needs and their medical needs.
Q. We all realize that the patient with the illness is hit hardest. But what about those who live around them -- family, friends, loved ones? How are they affected?
A. Cancer is a family illness. Psychology deals with both the primary and secondary patients -- the aging parents, the children, the spouse, the friends who are involved with that patient's treatments. The stress on a partner is enormous -- they're taking over the other person's role, the financial burden, the burden of children, while simultaneously containing their own feelings. The stress on the caretaker cannot be understated. Children in the family are very often ensconced in secrecy with parents mistakenly assuming that the illness is hidden from them. Children usually know something is wrong. Who is there to help the children? They're told to be quiet and very rarely are told what is happening. That's very scary for a child.
And the aging parents are also affected. Their child is dying. They may be in their 70s and their child may be 40, but it's still their child. Who do they turn to? What do they say? They have to go somewhere else to be upset. There are many, many people affected when someone is seriously ill.
Q. Some believe that after that last therapy treatment, the illness is gone. Isn't it true that the battle is really just beginning?
A. A lot of the population thinks that after that last chemo treatment that everything's behind you. It's not behind you. The rest of the world wants the patient to go back to normal, but the survivor of a serious illness will never return to who they were. Rather they need to incorporate the experience into who they now are. There's a tremendous disparity. The rest of the world wants them to go back to normal. But they're still upset, anxious and worried. They've lost the protective umbrella of being under physician care. They're afraid they'll have a recurrence or they are left with bodily disfigurement. They're not back to themselves. They need to be reintegrated into the world. After-care is a very neglected area.
Q. Are there any positives that come out of dealing with a chronic illness?
A. I did a study and asked those psychologists who had cancer and had worn the patient and psychologist hat about their experiences. Most of them said they found positive growth. They were forced to deal with this cancer experience and re-prioritize their life. They had a better sense of who they were. It's a long and difficult process, but positive things can come out of it.
Q. How can psychology help people to manage their pain?
A. Pain management is another area where psychology can be incredibly helpful. Psychological interventions help people to identify and control their pain. Pain is a subjective phenomenon. Psychologists can give patients a language to talk about pain with help from a rating scale. Patients note when the pain is most intense and what they are doing. Maybe it's worse at four o'clock in the afternoon, maybe at night. Let's learn about it. Is it numbing or shooting pain? The psychologist can also suggest anti-depressants to help the experience of pain by raising the pain threshold. Also, some patients are afraid of pain medication like morphine because they fear becoming addicted. In fact, that's not an issue with pain medication. Addiction is a psychological need. Pain medication addresses a physical need. Often people are very embarrassed to tell a physician they're in pain and the treatment is not working. They want to be good patients and don't want the physician to feel like a failure. I help patients communicate with the physician to increase their assertiveness. We get them out of the role of the ideal patient who makes no trouble.
As psychologists, we can reduce patient suffering in still another way.
Hypnosis is effective for pain management and doesn't cause physical side effects. Pharmaceutical pain treatments cause serious side effects, i.e. GI problems, sleepiness, etc. Psychological interventions do not have these side effects. For those who cannot tolerate medication side effects, psychological interventions play a critical role.
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