Managing Chronic Illness
Joyce Stack of Fairless Hills, Penn., was anxious about her two children as they approached their teen years. Not just about driving, sex, drugs or any of the other well-publicized issues of teens. Instead, she worried that they might stop for pizza on the spur of the moment and forget to take their insulin.
"When any kid hits their teen years life becomes a whole different ball game," says Stack. "You don't have the control any longer, and you can't just stand there making sure they're taking their insulin. It ratchets up the stakes because it's not like you're just trusting them with the car keys."
Every phase of parenthood has its own stresses, but the teenage years are new territory for both children and parents. Add a chronic illness to the mix, and it ups the worry level quite a bit.
Although Dr. Elizabeth McQuaid doesn't like the term "immortal" when used with teens, because she thinks they know better than that, she does say that adolescence is a period where teens are testing limits and don't have an enhanced sense of their own mortality.
Dr. McQuaid is an assistant professor in the department of psychiatry at Brown Medical School. The subject of her research is family approaches to chronic illness management. One of her recent studies, which tracked inhaler use in 58 children ages 10 to 16 with asthma, found that children took only about 40 percent of the medicine prescribed for their condition.
"Around the teen years, kids start spending more time away from home as they get more involved in outside activities," says Dr. McQuaid. "Someone who needs to be monitoring blood sugar throughout the day suddenly has school all day, then soccer practice and then goes to a friend's house and may just forget all about monitoring. Although this is the age that most children become more responsible for their own medicine, it has also been established that this is the time when they are least likely to follow strategies of preventive management."
The biggest issue is forgetfulness, but research shows that that's a problem with adults as well as teenagers. Add natural forgetfulness on top of everything that gets added to a child's life in the teenage years, and taking medication isn't always at the top of their list.
There are other factors involved, as well. Sometimes, as Dr. McQuaid found through her research with young asthmatics and their parents, the parent doesn't even have a clear idea of what a child needs to do for their health and therefore can't pass it on to the child.
Embarrassment or a fear of being seen as "different" may also be a factor. My daughter, Wende, has severe asthma, and when she began to have problems recently, that kept her from several softball practices. She refused to tell her coach the real reason for her absences. She merely told him she'd been sick. When I asked her why, she explained that if coaches find out you have something wrong, no matter how good of a player you are, they immediately discount you, figuring that you may let them down in the future and you automatically become a back-up player. Whether that's always true or not is doubtful, but since she's played softball for many years, I can't argue with her experiences.
Unfortunately, there have been times when Wende has dealt with her asthma by ignoring it, particularly when she's busy with other activities. The problem with that, as Dr. McQuaid points out, can be immediately apparent or can have cumulative effects.
"Part of being a teen is testing limits and realizing they don't have to do everything their parents say, so they may take the attitude of 'So what if my blood sugar is high?'" says Dr. McQuaid. "Then there are consequences. The diabetic can have an acute event, but you can have cumulative effects, like walking around with your airways always inflamed and always having to try to struggle through the day with the effects of that lack of oxygen and not even realize that's why you feel so bad."
Nudging, Not Nagging
Stack says she kept her sanity – and kept her kids healthy – by always dealing with them in a very straightforward manner when it came to their diabetes.
"The best way to deal with kids is to not keep any information from them," she says. "Let them know what's going on, and allow them to make their own choices. The key is to be open with them about their illness from the time they're very small, including new treatments and other new information. Teens never think anything's going to happen to them, but they need to understand that when you have a chronic illness you have a little more on your plate. Then, all you can do is hope everything you've taught them gets through."
Dr. McQuaid says that her research has showed her pretty conclusively that parents can never back down on their involvement in the health management issues of a teen with a chronic disease. Rather, the parent needs to adapt their style to the changing attitudes of the child as he or she goes through adolescence.
"One thing we hear constantly from kids who are just learning disease management is that they appreciate being prompted by parents, but they don't like being nagged," says Dr. McQuaid. "It's a funny paradox, but there are ways to help your kids by prompting them, without turning it into a battle."
She suggests leaving the medications, such as the inhaler or glucose monitor, in a prominent place so it's difficult to forget to use. Another trick is to coordinate medications with another habit, such as teeth brushing so that one automatically becomes identified with the other.
Sometimes parents will get multiple subscriptions for a blood glucose monitor or inhaler and keep one at home and one in the car or child's backpack. That way, if the child does forget, the chances are a trip back home to get the item won't be necessary. If embarrassment or self-consciousness is a factor, arrange for a meeting with your child and the school nurse and help to map out strategies for privacy when the child has to monitor blood sugar or use other medical devices.
As with every issue that involves teens, you have to pick your moments. If a child is already in a surly mood, that's probably not the best time to talk about disease management. Rather, keep the lines of communication open, and talk about it when the child is in a good mood, so it doesn't become an argument.
Ultimately, it comes down to what every issue with teenagers comes down to: Do your best and hope they carry your teachings and advice out into their bigger world. Whether the issue is sex, drugs, drinking, safe driving or managing a chronic illness, all a parent can do is give as much support as the child will accept, then hold their breath and hope for the best.