Children with chronic illnesses--medical conditions that don't go away but must be managed every day--often have more stress than other young people do. They may have physical limitations that keep them from participating in sports and other activities. They may have to spend a lot of time in the hospital. They may face repeated surgeries and difficult treatments. They may have days when they just don't feel very well.
Adjusting to a chronic health condition--whether it's diabetes, asthma, epilepsy, arthritis or another illness--means a lot more than taking your medicine when you're supposed to. "Young People and Chronic Illness: True Stories, Help and Hope" by Kelly Huegel (Free Spirit Publishing, $14.95) tells the stories of 10 young people who are living with chronic illness. The book explains what their routines are like, and offers advice about how teachers, parents and friends can support chronically ill young people as they work to have normal, happy lives.
Doctors and nurses who work with chronically ill children say that it's very important to realize that these kids need to feel as normal as possible. They need to take as much control of their illnesses and their medical care as they can. They need to feel independent. And they need to participate in the things that other kids do.
It's not always easy. "Kids with chronic illness are forced to grow up faster than other kids their age," says Huegel, who was diagnosed at age 12 with Crohn's disease, an incurable digestive disorder. "They're faced with issues that most kids don't have to face until much later in life."
"Adjusting to life with chronic illness isn't easy," adds Huegel. "'But if you care enough about your body and yourself, you can accept your situation, find the courage inside you and make the most of your life. You didn't choose to have a chronic illness, but you can choose how you're going to deal with it."
Greg Price, a high school student in Falls Church, is one of the young people profiled in the book. Greg has hemophilia, a blood disorder, and has learned to give himself the frequent treatments he needs. "I don't think of myself as a sick person," Greg told Huegel. "To me hemophilia is more of an inconvenience. Other than that, I'm a pretty normal kid. Sure, I get frustrated once in a while. There are many times when I can't do what my friends are doing. When that happens, I concentrate on the things I can do. I may not be able to play football, but I can fence, swim or golf. There are alternatives.
In her book, Huegel outlines five steps for young people dealing with chronic illness:
1. Face your fears. Get as much information as you can about your condition. Educate yourself to increase your ability to take an active role in managing your illness. And be ready to answer questions that other kids ask, such as "Is it catching?" (Conditions such as asthma, lupus, Crohn's, diabetes and epilepsy are NOT contagious.)
2. Be good to yourself. You didn't do anything to make your illness happen. Give yourself a break and stop thinking negative thoughts.
3. Know your limits. You can find creative solutions to work around them to accomplish your goals and have fun.
4. Focus on what you CAN do. Get involved in activities that let you show off a little!
5. Express your feelings. Huegel writes. "You have a right to feel a mix of emotions." Tips for Parents
Chronically ill children at medical centers around the country--including the Children's National Medical Center here in Washington--have discovered that communicating by computer can relieve some of their feelings of loneliness and isolation. "Starbright World" is an online community for seriously ill children that helps them with the difficulties associated with hospitalization. The program includes e-mail, games, chat rooms and a "find a friend" service that links two children together who have similar illnesses. At this time, Starbright World is available in hospitals nationwide; and the foundation is actively working to make it available to homes. For more information, call 1-800-315-2580 or visit http://www.starbright.org/ For You to Do
Author Kelly Huegel advises young people with a chronic illness to keep a journal. "You'll be surprised at how much better you'll feel after writing your thoughts down on paper," she says. Keeping a journal is a great way for anyone to express their feelings, explore their creativity and keep a record of the changes that happen as they grow up. Try it! Any old notebook will do, but it can be inspiring to use a special, attractive book designed for the purpose. Check stationery stores or bookstores for journals. Or make one yourself by decorating the cover of an ordinary spiral-bound notebook. Try to write every day, even if it's only a few sentences or notes. Your journal can become a trusted friend.