Fear and helplessness

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A diagnosis of leukemia strips parents of control over their child's daily life. Previously, parents established routines and rules which defined family life. Children woke up, washed and dressed, ate breakfast, perhaps attended day care or school, played with friends, and performed chores. Life was predictable. Suddenly, the family is thrust into a new world populated by an everchanging cast of characters (interns, residents, fellows, pediatric oncologists, IV teams, nurses, social workers) and containing a new language (medical terminology); a new world full of hospitalizations, procedures, and drugs.

Until adjustment begins, parents sometimes feel utterly helpless. Physicians they have never met are presenting treatment options for their child. Even if parents are comfortable in a hospital environment, feelings of helplessness may develop because there is simply not enough time in the day to care for a very sick child, deal with their own changing emotions, begin to educate themselves about the disease, notify friends and family, make job decisions, and restructure the family to deal with the crisis.

Parents also experience different levels of anxiety, including fear and panic. Many develop problems sleeping and feel overwhelmed by fears of what the future holds. Their world has turned inside out—they have gone from adults in control of their lives to helpless people who cannot protect their child.

Sometimes I would feel incredible waves of absolute terror wash over me. The kind of fear that causes your breathing to become difficult and your heart to beat faster. While I would be consciously aware of what was happening, there was nothing I could do to stop it. It's happened sometimes very late at night, when I'm lying in bed, staring off into the darkness. It's so intense that for a brief moment, I try to comfort myself by thinking that it can't be real, because it's just too horrible. During those moments, these thoughts only offer a second or two of comfort. Then I become aware of just how wide my eyes are opened in the darkness.

Many parents state that helplessness begins to disappear when a sense of reality returns. They begin to make decisions, study their options, learn about the disease, and grow comfortable with the hospital and staff. However, feelings of fear, panic, and anxiety periodically erupt for many parents at varying times throughout their child's treatment.

A friend who had lost her husband to cancer called soon after my daughter's diagnosis with acute lymphoblastic leukemia (ALL). I told her that I felt helpless, confused, overwhelmed, and teary. I cried, "When will I be my usual competent self again?" She assured me that the beginning was the worst, but to expect to be on an emotional roller coaster for the entire two years of treatment. She was right.

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