8 Strategies for Mastering Illness
Illness can open the door to positive change.
Posted Feb 05, 2011
In After the Diagnosis we outline eight methods for coping with chronic illness. Here they are, together with brief descriptions of patients who, by adopting these approaches, found their way to creative solutions to the problem of being ill.
Be yourself. Hold onto who you are despite the diagnosis.
Sheila, who had a potentially fatal diagnosis, started writing about the medical adventures of her alter ego, "Lucy Rooney," for Harvard Medical students (including her fear that her ovaries would be fried by chemo). Several years later, and eight months into her "miracle" pregnancy, "Lucy" showed up as the final exam for the students. By recording her experiences in a journal, Sheila hung onto a sense of personhood even when she was being treated like a "case" by a parade of doctors more interested in her condition than in her life.
Know yourself. Find a balance between preoccupation and denial.
Beverly was hoping for bad news. She was sure she had "vasculitis"—she'd read all about it on the web—and she felt that no one was taking her seriously. Partly because her condition couldn't be firmly diagnosed, she became more and more preoccupied with her body, more and more in need of attention. In contrast, Bill, a retired firefighter, wasn't interested in the progression of his kidney disease-he wouldn't (or couldn't) stop overeating, drinking beer, smoking, and when it was time for dialysis, he said a firm no. John Farajian, a businessman with chronic kidney disease, found a middle way between Beverly's obsession and Bill's stonewalling. He paid close attention to diet and supplements, took antihypertensives, and exercised regularly, all in the interest of reclaiming a life apart from illness—a life that involved travel, the pursuit of hobbies, and precious time with his grandchildren. Between the extremes of "too sick" and "not sick," John found a way to be "just sick enough."
Transcend yourself. Go beyond the physical to find sources of meaning.
Bobby, who had malignant melanoma, was told by the National Cancer Institute that there was nothing more that could be done and he should go home to die. He went to a Korean healer who performed "moxabustion," burning sticks of incense on his skin; though he had infections from the burns, he went back to the healer for more treatment, explaining that he found peace in the ceremony. Some patients, like Bobby, seek alternative medicine because western medicine fails to provide meaning or comfort; others find solace in their religious faith, confident that their illness has a purpose and that God will see them through whatever trials they face.
Transform yourself. Find and express unexplored parts of yourself.
Frank, who used to be a world-class scuba diver, had to give up deep-sea diving because of his kidney disease; he traded in his oxygen tank for a metal detector, and started looking for buried treasure in the American southwest from the time of the conquistadors. Another example is Cassandra, an opera singer who lost her singing voice because of lung complications of her vasculitis. She became so interested in the details of her illness that she ultimately studied to become a doctor, exchanging one kind of self-expression for another. For these two patients, and many others I've met, when one door closes, another opens.
Forget yourself. Let go of obsession.
After receiving a kidney transplant, Joe had to have a series of facial surgeries for cancerous growths related to immunosuppression. Instead of becoming totally preoccupied with these frequent procedures, he shrugged them off. After the most recent surgery, he grew a mustache. "Makes me look younger," he said. Generally, when things get tough with his health, he heads out on his boat to go cod fishing. He's willing to "fuhgeddaboudit." Most patients find some activity that allows them to put the illness aside and just be. Or sometimes it's a special place that allows a space for forgetting. A patient with multiple myeloma told me about his easy chair, where he makes phone calls, listens to music, relaxes; in the easy chair, he doesn't feel sick.
Forgive yourself. Let go of remorse and guilt.
Michael, who had hepatitis C related to long-ago drug use, developed a rare disorder called cryoglobuleinemia, involving deposits of protein throughout his body—a condition that was probably also linked to his former cocaine addiction. He said repeatedly, as one thing after another went wrong, that it was "just his luck"—a way of forgiving himself for the errors of his youth, and accepting his illness. The fact is, many people who go straight don't develop later medical problems, or the problems respond more readily to treatment. "Luck," bad or good, is the name we give to what we can't control; and because we aren't in total control, self-forgiveness and acceptance become important means of living well, even while ill.
Grow. Let yourself change over time.
Many people with chronic conditions find it difficult to adapt to the changes required as a disease progresses. Lyla, who had diabetes and AIDS, and went AWOL from clinic when facing dialysis, felt ready to die. When she finally came into the office, I began by helping her take her own blood and showing her how to use her glucometer. The 'laying on of hands'—simple unmediated touch—seemed to make her feel more hopeful, and she agreed to give dialysis a chance. An attitude of hope and openness, on the part of both doctor and patient, can unlock the door to positive change.
Share. Allow yourself to depend on others.
Dependency has a bad name in our culture, and people with illness can be hugely reluctant to relinquish autonomy and acknowledge the need for help. But the giving and taking of care is a valuable aspect of family life, whether the one in need is a young child, a disabled spouse, or an aging parent. One daughter said to me, of her aging father, "Taking care of him is the most meaningful thing I could ever do. What's wrong with being close?"
These eight approaches are meant to help you find meaning and hope as you experience what illness signifies in your life. Though the eight "tips" are couched in the active voice, the idea is not to "Just Do It." Authentic growth depends not only on intention and effort but also on opening yourself to what has happened to you and letting experience change you. This more subtle process of transformation, paradoxically, can't come any other way: an illness that appeared to close off possibility becomes, in the end, an avenue for creativity and enrichment.