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Finding independence

As a teenager living with cystic fibrosis (CF), your teen is on the edge of adulthood. It’s the period of time when they’re yearning for independence, but may not yet have the skills to do everything all on their own. Finding a balance between being there for them and taking a step back is key to helping you support your teen as he or she takes on a bigger role in his or her treatment.

Balancing school

and treatments

With high school comes more demands on your teen's time. And if he or she participates in extracurricular activities, scheduling can be even more challenging. One way to help make treatments a priority is to schedule strategically. Creating and sticking to these routines can help keep the focus on day-to-day teenage life, while helping to make sure your teen stays on top of their treatment. Here are a few ways to plan CF treatments around school activities:

  • Work with your teen’s school to have a late start, like a first period study hall. If possible, this will allow your teen to go to school later, so they will have time for their morning treatment routine
  • If your teen is on a sports team, put together a plan for sticking to treatments on game days. Your teen's coach or school nurse may help
  • Try to combine treatments that require staying still for long periods of time with activities like computer or cellphone time, homework, or playing games

Remember to review your teen’s treatment schedule with his or her healthcare provider before making any changes.

Caring for yourself

Finding time for you

Finding the time to take care of yourself is easier said than done. But doing so can help you be the best you can be for your teen. It can be something as simple as taking a walk, reading a book, or catching up with a friend. Even if it’s just for a few minutes, try to do something that will help you unwind and feel refreshed.

Giving

your teen space

Teenagers want to assert their independence, so help them along. Encourage your teen to start taking control of their treatments. Everyone is different, so try to build an appropriate plan for your teen that will meet both of your needs. Here are a few ideas:

  • Have your teen schedule his or her doctor appointments
  • Encourage your teen to write down any questions or concerns they may have for their doctor. You can even do this together in the waiting room before the appointment
  • At doctor appointments, let your teen speak with the doctor alone to bring up any concerns on their own
  • Consider giving your teen another task to complete on a regular basis. This may be a good way for them to show that he or she is ready to take on more responsibility

Transitioning Treatment To An Adult Center

If your teen is an older teen, he or she will eventually need to transition from pediatric to adult care. For some, having to get to know a new team can seem like an intimidating experience. This guide is intended to help make the transition easier by going over:

  • What you can do to help them to prepare
  • Researching medical services in the area before you go
  • What your teen can do to prepare

Telling

friends about CF

CF is personal. Support your teen’s decision on whether or not they want to tell others about having CF. Let your teen know that if he or she does decide to tell close friends, they can become valuable sources of support. Below are a few tips for you to share with your teen to guide their discussion:

  • Start by letting your friends know that you're sharing this information because you care about and trust them
  • Encourage them to ask questions, if you feel comfortable
  • Explain some of your treatments
  • Remind them that, even though you have CF, you're the same friend they've always known

Caring for yourself

For caregivers at work

It’s your choice whether or not you tell coworkers or employers about your child’s CF. But, if you do, you may want to keep your employer updated as your responsibilities for caring for a teen with CF change. Don't forget that the Family and Medical Leave Act (FMLA) provides employees with job-protected and unpaid leave for specific medical and family reasons.

Check out the Resource Library

For the downloadable resources found on this page and others in Navigating Life With CF, visit the Resource Library. There you'll find information for caregivers and people living with CF that you may find helpful.