Tuesday, January 15, 2008

Surviving the Rollercoaster of Teen Rebellion in CF

Teenagers and young adults rebel. It’s what they do. Pushing the limits and testing boundaries is part of the process of developing self-identity. Watching your “baby” seemingly disregard a more than a decade’s worth of instruction and wisdom is, no doubt, a frustrating and frightening time for parents. That feeling is compounded ten-fold when your teen has cystic fibrosis, and the rebellion manifests itself as non-compliance or outright refusal to participate in the daily rigors of caring for his or her health.

Some adult cystic fibrosis patients confess that they rebelled in the following ways during their adolescence:

- “forgetting” to take enzymes with meals

- Hiding multivitamins and other medications in the houseplants

- Throwing away their sack lunches at school because they were embarrassed to have to eat so much

-turning on the nebulizer/compressor so it would make noise and fool parents into thinking a treatment was being done

-lying to the CF doctor about taking medications

-engaged in reckless behavior because they believed they wouldn’t live to be an adult

Here are some suggestions and considerations for parents whose teens are in the throes of out-and-out rebellion against cystic fibrosis:

Remember that rebellion is normal. Even if only for a moment or two, be glad that this phase of your son or daughter’s life is normal and typical teen behavior.

Rebellion can serve as a path to greater self-awareness for your teen. Allow him or her to make mistakes and suffer the natural consequences. As s/he pushes against the limitations of cystic fibrosis, s/he will learn what happens when the body is deprived of what it needs to function well with CF. This in turn, will help your teenager to be better prepared to identify what is “normal” and healthy, and what is not. Think of it as a training exercise for the day when your teen will be off on his own and will have to make his own decisions about when to call the doctor.

Do keep a watchful eye on your young adult, but resist the urge to argue over compliance issues. Develop a discipline system that works best for your family, and implement it as you see fit. For younger teens, you may want to use a reward system. Teach them that failure to do the required things such as medications and treatments, means a loss of privileges of the more amusing and enjoyable aspects of life, such as having friends over, going out to a movie, etc.

Rarely does this rebellion become life-threatening. If your teen is in relatively stable condition with respect to lung health, a short season of rebellion is not likely to trigger an acute or dramatic downfall. Although it’s inevitable to remain completely unscathed when refusing to take medications or properly care for one’s body, many cystic fibrosis patients, now in their adult years, are none the worse for wear despite their turbulent teenage years.

Don’t argue with your teen in an attempt to get him or her to understand that failure to comply with treatments now could mean he or she will die younger. Although you as a parent can see the potential long-term benefits of compliance, that line of thinking simply doesn’t penetrate the thick skulls of young adults. Whether you consider your teen to be very mature for his or her age, or very smart about CF doesn’t matter. They will be in a state of somewhat ignorant bliss of the complications of CF until they are adults and have to manage every facet of their health regime themselves.

Make the most of opportunities to talk to your son or daughter about the frustrations of cystic fibrosis, but don’t dwell on every negative aspect of it. Remind him or her that it’s okay to need help with the emotional side of things, and ask if he or she would be interested in talking to a professional or non-family member (such as a clergy member) about what is going on. If he or she is not interested, don’t force the issue.

If your teen’s rebellion takes on a truly unhealthy form--such as experimentation with illegal recreational drugs and alcohol abuse—or begins to change into depression or self-mutilation, take action. Coping with cystic fibrosis is difficult enough without these added challenges.

Teens with cystic fibrosis will rebel just as their peers will. How long this turbulent phase and wild ride will last depends on the individual. The role of parents during this time is to help steer their adolescents safely through this period with as little heartache as possible. Parents, you are not alone in this frustrating battle, and neither are your kids.

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