Parents and Chronic Illness

Enlisting the Right Support Team

When Bruce Feiler, of New York City, learned that he had a seven-inch cancerous tumor in his leg, he immediately thought of his twin daughters, who were 3 at the time. "If I die, will they wonder who I was? Will they yearn for my voice? I thought about the things I'd miss -- the boyfriends I might not be able to scowl at, the art projects I wouldn't get to hang on the wall," he says.

Soon after, the idea came to him to ask some of his favorite men to form a group called the Council of Dads to help look after his daughters. One was designated to teach the girls the joys of travel as they grew up, for example, another to teach them all about nature. "Not only did it reassure me that my daughters might know what I might have taught them, but it gave me a wonderful chance to talk to these men and tell them what they meant to me, and ask for help," says Feiler, 45, who has been cancer-free since 2008 and recently chronicled his experience in The Council of Dads: My Daughters, My Illness, and the Men Who Could Be Me. He recommends other families consider a similar approach, even if they aren't facing a life-threatening illness. "It helps families re-create a sense of extended family, and builds a bridge between relatives and friends, right when you need it most."

For many parents, disease-specific support groups can be very beneficial and are often the only outlet where they can discuss their condition freely. Roll, for example, says an MS group was extremely helpful in the early days, providing perspective and even a dose of gratitude. "My injections cost $2,000 a month," she says. "I met women in the group who couldn't afford medication, and I realized that we're so lucky to have an insurance plan that covers it."

It's also vital to talk about your feelings with a mental-health provider who has expertise in helping people with chronic illnesses, since depression -- a recurring illness itself -- is one of the most common complications of chronic disease. Experts believe that as many as 35 percent of those who are chronically ill develop depression too. Diagnosing and treating that depression can be tricky, since so often the symptoms, like fatigue and changes in appetite, are similar to problems of the first illness, or even to the side effects of the drugs used to treat them.

Finding ways to fend off those dark days is important. Jamie Young, 40, was diagnosed with lung cancer when her only child, Ryan, was 2. Young, who lives in Walls, Mississippi, says that most of the time she is upbeat and optimistic. But about a week before each of her twice-yearly checkups, she feels a cloud of fear descending upon her. Even Ryan, now 7, notices it. "I call it scan-xiety. When I was diagnosed five and a half years ago, I learned I had a 15 percent chance of surviving past five years. And right before an appointment, it's hard not to think about a recurrence, and let that worry bring you down," Young explains. "I'm now considered to be in full remission, but due to the extent of the disease when I was first diagnosed, I can never be completely cured."

Rana Kahl, 43, a breast-cancer survivor and mom to Aiden, 7, and Ethan, 3, feels guilty about what her illness has meant for her husband. "Yes, I was the one who had to suck it up and go through all the treatments, but poor Kevin had to stand by and watch. I worried about leaving him a single parent," says Kahl, who lives in Manassas, Virginia. But she explains the impact the situation has had on their marriage: "We learned what unconditional love really is, in its truest form. We had to figure out how to navigate our new normal -- and we still do, each and every day."

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