Moira McCarthy will never forget the night her 13-year-old daughter, Lauren, came to her with blood sugar readings so high she had to be rushed to the ICU. After being a model of diabetes self-management for seven years, Lauren had grown tired of the constant finger pricks and concern about her numbers, so she stopped taking her insulin altogether. Although she recovered from her “medication vacation,” Lauren’s rebellion was a shock to her family, who only then understood her frustration. “Between the headaches and nausea, Lauren felt horrible off her insulin,” says Moira. “But she loved being free from the medical routine.” And she’snot alone in that struggle.
Nearly one in three teens have some kind of chronic health condition. As a parent, when your child is diagnosed with a chronic disease, you’re immediately consumed with how to control it: prescription drugs, testing, monitoring. As for the kids, they’re often consumed with hiding it—particularly once they hit high school, since all they want is to maintain a normal teenage life.
Luckily you and your child can find a happy—and safe—medium. “Parents have more influence than they realize in how teens feel about their illness,” says Laurie Tsilianidis, MD, a pediatric endocrinologist with hospital. To help your child overcome embarrassment and build confidence, follow these five disease management mantras.
1. Prevent privacy concerns.
If your kid’s condition puts a spotlight on them—perhaps they have to pop a pill on schedule, regularly check their insulin or frequent the bathroom—they may be silently distressed. “All these actions are unwelcome reminders,” explains Frank Sileo, PhD, executive director of the . “They say, ‘I have something wrong with me’ or ‘I’m different.’ ” Tell your kid that what seems conspicuous to them often isn’t noticed by others. Also devise some situation-specific strategies. If your daughter is invited to a sleepover, ask her doctor if she can take any prescriptions earlier than usual, or fudge the truth and explain to the host that she’s on antibiotics so she feels less self-conscious.
2. Stop problem solving.
Don’t immediately go into fix-it mode whenever your kid mentions how some aspect of their illness impacted their day. All your teen may want to hear is “Your day sounds like it was tough, and it must have been hard dealing with all that.” Sometimes your kid needs a solution, but other times they just want a sounding board and some emotional support. Playing up their strengths and good qualities helps too. “Kids benefit greatly from being reminded that their illness doesn’t define them,” explains Jill Emanuele, PhD, senior director of the at the in New York City.
3. Beat disease fatigue.
It’s troubling but true: Teens get tired of their illness—and that’s when serious problems can arise. A kid with depression may blow off a therapy appointment, an asthmatic may stop carrying their inhaler and a diabetic may skip their insulin. Avoid apathy by shifting your tone. “For example, if too-high or too-low readings make kids with diabetes feel like they’ve done something wrong, they may get lax about monitoring their blood sugar numbers,” says Tsilianidis. Instead, respond to insulin readings matter-of-factly to lessen the emotional upset that comes with less-than-ideal results. Treat numbers like neutral—as opposed to good or bad—data, she says. If something’s off, simply view it as a sign that it’s time to make an adjustment.
4. Do some rebranding.
Adolescents may adopt negative descriptions they hear about their illness, thinking of themselves as weird, flawed or even weak. “Tap into the upside of an ailment,” suggests Edward Hallowell, MD, a psychiatrist and co-author of . Classmates or teachers might call the restless behavior of kids with attention deficit hyperactivity disorder (ADHD) unfocused or disruptive, for example. Show your child the benefit of that extra energy by helping them find an activity or hobby to channel it into. Or point out that perhaps having a chronic illness makes them more empathetic, a healthier eater or simply better in tune with their body. Whatever the pluses, emphasize those over potential minuses.
5. Build their skills.
You know what sucks all the fun out of a room? When your kid has to sneak away from a party to take a pill. Or they have to quiz a waiter on the ingredients in a dish when eating out with friends. Yes, food allergies, for example, can be life threatening. But recognizing that your child’s feelings about food go beyond safety can prevent a tragedy. “Teach them to navigate a situation, not just a food,” says Lynda Mitchell, MA, founder of the division of the . “Parents need to talk about smart behaviors and ways to adapt—not just the illness itself.” Maybe your teen could keep a short “safe foods” list on hand for when they eat out. Help them brainstorm ways to carry their epinephrine auto-injector without being obvious. Encourage them to have a couple of trusted friends who know what to do in an emergency. And remind them—perhaps more than once—that what feels awkward will start to become routine. “Eventually,” says Tsilianidis, “everyone adjusts to the new normal.”
Coping Strategies from Moms and Dads of Children Who Have Chronic Illnesses
Choose your words wisely.
→ “Avoid undermining what your kid is going through by saying ‘Don’t think about it and you’ll be fine.’ When my daughter’s overwhelmed, I tell her to just focus on getting through today—or even the next hour.” —Paula, Concord, NC, mom of a teen with anxiety
Use your imagination.
→ ”Many teens start taking risks with their routine because they want to fit in. Have ‘What are you going to do if . . .’ conversations with your kid.” —Beth, Madison, WI, mom of a teen with severe food allergies
Switch your thinking.
→ “When Lauren wanted to go to college 500 miles away, I was initially against it. Then I considered what I’d do if my child didn’t have diabetes. The disease has changed so much of her life. Why would I let it take more?” —Moira, Plymouth, MA, mom of a daughter with diabetes
Watch for worry.
→ “I vastly underestimated the anxiety kids have with chronic illness. Now I realize it’s a universal theme. When you have a chronic illness, you are constantly concerned about when the next shoe will drop. Parents should be on the lookout for signs and symptoms of anxiety.” —Paul, Wilmette, IL, dad of a teen with severe food allergies
Prepare to pass the baton.
→ “The biggest mistake we make in managing chronic conditions is thinking we should know what we need to do and that we should do it ourselves. This sets us up for failure. Empower your kids to understand their challenges so they can learn to self-manage.” —Elaine, Atlanta, GA, mom of a teen with ADHD
Photos, from top: Maskot/Getty, Jim Bastardo/Getty, Guerrilla/Getty.