Dealing with Life-Limiting Illness *

David A. Gershaw, Ph.D.

When we are young, we think we are immortal. As we grow older, we realize that this is a fantasy. When we have a life-limiting illness, our mortality becomes very clear. When we have such a menace to our existence, what can we do?

After two decades of research, Dr. David Spiegel, Professor of Psychiatry at the Stanford University School of Medicine, and his associates have come up with four principles to help us deal with the impending threat of death. Although their data have come from women with advancing breast cancer, the lessons they have learned can be applied to any life-limiting disease.

Face the danger squarely. Rather than avoiding the thought of dying, acknowledge the threat. It will seem terrifying at first, and you will go through gut-wrenching emotions of fear, sadness and anger. However, even this cloud of emotions will have a silver lining. Once you have faced the illness and gone through the associated emotions, you can find ways to deal with it. You can learn how to get medical treatment and still carry on with your life.

Hiding from the terrifying knowledge like not getting tests done that will determine if you actually have the disease usually means that this fear will almost be constantly haunting you. As frightening as it might seem, it is better to face your problem, so you can do something about it. Those who put off facing their problems often find that helpful options which could have worked if they had acted earlier are no longer possible.

Seek out others who have a similar problem. There are support groups of people who have similar problems from cancer to AIDS to help them face their problems together. When suffering from a serious illness, people feel isolated and removed from everyday life. Family and friends not knowing how to respond often avoid those who are ill.

The illness which may exclude you from the ebb and flow of daily life assures your admission into a support group of people with similar problems. In such a group, others will really understand your situation, share methods of coping and care about you. In turn, the tragedy of your illness allows you to help others in the same situation.

Treat the illness seriously, but don't let it overwhelm you. After you have confronted your illness and received support, you can gain a new outlook on life. Any serious threat to life causes us to clarify our priorities. We can sort out the important from the trivial to make the most of the time we have. (As an example, a coed of mine was devastated by a low grade on a psychology exam, until breast cancer entered her life.) We can learn to drop unwanted social obligations and concentrate on the people and projects that really matter to us.

Accept what you cannot change, but take control of your life whenever you can. A serious illness helps you to clarify what you want in your relationships and how to get it. This may involve readjusting relationships with your family and friends and with your physician as well. You might want to work together with your physician to assume greater responsibility for your treatment. In Spiegel's support group for breast cancer patients, they learned self-hypnosis, which reduced the side effects of chemotherapy pain, nausea and vomiting. Even the simple relaxation and concentration methods they used cut pain in half. In comparison to similar women outside of the support group, support group members experienced less anxiety, fear and depression. They had not only found a way to face the inevitable they were able to live better.

In support groups,
people adjust to their disease better,
and they live longer.

After over a decade, Spiegel was surprised by the survival time for members of his group. Unfortunately, almost all of the women in his group and the control group of women (who received routine medical care) had died. However, those in the support group lived an average of 18 months longer. It seems that having a support group not only helps people adjust to their disease, the psychological and emotional support may slow its progress.

In several other recent studies, psychological interventions with lymphoma (cancer of the white blood cells) and malignant melanoma (a skin cancer) increased survival time. By facing the illness directly and using a support group, those who are seriously ill can help themselves to live better and longer.

In Yuma, if you have been diagnosed with any life-limiting illness, support can be found by calling Hospice of Yuma (HOY) at 343-2222. They not only have volunteers, but they also have a staff of professionals who will come to your home to provide help. It is not accidental that the acronym for this organization is "HOY" the Spanish word for "today." It is a reminder to each of us ill or not to make the most of our life by appreciating what we have and living each day to its fullest.

* Adapted from David Spiegel's article, "Ways to cope with life-threatening illness," The Menninger Letter, June, 1994, page 4. More information on this topic can be found in Dr. Spiegel's book, Living Beyond Limits, Times Books: New York, 1993.

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