From the time that you learn that you have an illness that is expected to take your life some day, the rhythm of your life changes. When you face a serious illness, you also face the challenges and worries that go along with it. You, and those who care for you, may wonder how you will cope with your life as it changes in so many ways.
One place to start, and, from there, to cope, is to look at your particular situation: What is the nature of the disease? How old are you, and what are your relationships with others? How have you dealt with illness in the past? What do you know of dying? Have you cared for someone else who was sick, or lost someone you loved? Your experiences are likely to shape your experience at the end of life.
Knowing that your life is threatened raises lots of concerns and questions about the future. You are not alone in desperately wanting answers to questions such as:
You may feel very troubled, worried, and afraid. Worse, you may not know how to express your concerns, what to do, or what to say. The uncertainty and the distress can be just as troubling as other symptoms of your illness. In fact, your emotional state can profoundly affect how you feel physically.
Consider these patients: Norma had lived with congestive heart failure for several years, and although she was weary of her illness, her primary concern was for her elderly husband, who suffered from advanced Parkinson's disease. "I worry about what will happen to him when I'm gone. The children are close by, but they have their own lives, so I have to hang on as long as possible."
Janie, a 28-year old suffering from advanced breast cancer, worried constantly about her 6-year-old daughter. "This has all happened so fast, and I don't think Lisa understands what's going on. She gets so upset when I can't do things with her. There doesn't seem to be anything that I can do."
A young corporate executive, Tom struggled with his declining physical ability, the result of an aggressive lung tumor. "I once managed hundreds of people and everything ran efficiently. I was never sick and now I need help with everything. This can't be happening to me."
Much of the suffering that comes with life-threatening illness arises from overwhelming feelings of loss. These feelings can be complicated by the ambivalence that so commonly directs the ebb and flow of emotions in the course of a long illness. Norma longs to be free of her restricted life but is afraid for her spouse. Janie admits that sometimes death seems preferable to the terrible pain she has at times, and yet she cannot bear to think of her child as motherless. Tom can't imagine a time of "not being." Your life may be a series of ups and downs. When you feel well, you may feel that a mistake has been made and that life will continue uninterrupted. Then, as if on cue, some change occurs, reminding you of your illness.
As dismal as your situation may seem at times, there is reason to be hopeful. Knowing that changes will occur and that anxiety and ambivalence will sometimes disrupt your life can also free you to make choices about how you will respond. You may not be able to change the outcome of your illness, but you can decide how you want to react to the emotional and spiritual pain, the anger, the frustration, the losses — the emotional roller-coaster ride you may sometimes experience.
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