STORY BY

Gay McFarland

Martha picked up the phone receiver. Put it down. Picked it up again. With nervous resolve, she dialed her long-time friend Jan's number quickly. "When it began to ring, I panicked and almost hung up," she admits.

Jan had just been diagnosed with metastasized breast cancer. The cancer that all had thought was vanquished forever after the mastectomy, chemotherapy and radiation, was now coursing its way through Jan's bones. Martha was fearful of saying the wrong thing and anxious with even the idea of chronic or terminal illness. For Martha, Jan had ceased to be Jan-the-friend and had morphed into Jan-the-disease. "When I heard her familiar drawl though, I relaxed and realized how ridiculous that was. Jan was still Jan-not Cancer."

Big lesson. Big difference, Martha says.

It's also a big problem for a culture that is phobic about what it perceives as flawed or "damaged goods."  "Our society worships Superman/Woman, beauty, youth, high energy, thinness, PMA (Positive Mental Attitude) and glowing health," says Hui-Ming Chang, M.D., M.P.H., associate vice president for International Programs at The University of Texas Health Science Center at Houston. "Using that as a frame of reference, of course those situations that are thought of as negative-such as illnesses-would be unacceptable."

The ways in which we relate to our friends and loved ones should not change because their lives have changed, says Jane Mahoney, D.S.N., assistant professor of nursing for Target Populations at the UT School of Nursing. "But clearly, if we see them as abnormal or 'different,' then the ways in which we respond to them will be affected."

Re-Learning how to care

In the early 20th century, says Mahoney, the biggest health problem was combating infection. "Now, we are faced with a different healthcare picture. We have effective medications and so much technology that people get chronic illnesses as a result of not dying."

And that's not all that's changed.

As families, we share space differently as well. "Until 40 or 50 years ago, generations of a family lived together. That was the norm. By living in such a way, we learned how 'to be' with each other in life's transitions," Mahoney says. We took life cycle events, both good and bad, in our stride as natural bends in the road. Even death occurred at home, as did the preparation of the body for burial.

"We lost that in the last two generations. And the loss makes a difference in the ways in which we communicate," she says, particularly with those who are dealing with disease.

Modern American culture, though well-meaning, can be its own biggest obstacle to dealing compassionately with disease. We are so busy trying to do for someone else, that we no longer know how to be with someone who hurts. "We don't know how to tolerate other people's pain. Part of the human condition is having the capacity to be still with a suffering person. That takes a special tuning-in to what a person is saying and what she really means," Mahoney notes. "One person tolerating another person's pain and suffering is a gift to both."

We even are socialized to give pat responses: How are you? I am fine. And you?

"But there are times when people need more than that-or at least something different. We need desperately to pay attention to people's nonverbal cues and to situate ourselves so that the person with the illness is the important person," Mahoney says.

There are no official guidelines to teach us how to talk with those with disease, says Chang. But we must remember, "We are all mortal and thus, we will all die, so we can and must learn to communicate with those who are ill. Few of us have yet gone down the path of having a life-threatening illness so it is hard for us to know at first what is right to say and do."

The key to helping loved ones through illness is to accept their experiences as unique and as an opportunity to learn from them. " We can never fully understand another person's experience but we can try. And when we come to understand it better, we know what to do," Mahoney says.

Last Updated: 3-25-2005

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