Building a Cystic Fibrosis (CF) Support System

Living with CF, we become experts in our care. We must learn to manage the physical, psychological, and social challenges of living each day with a chronic disease. The support system I rely on is essential in helping me cope with all of this. They provide the encouragement and support I need when things are difficult and also create accountability to help me avoid cutting corners when things are going well.

My Story

As an adult, I’ve made a conscious choice to view CF with a positive mindset. But, this was not the case when I was a child or teenager. To me, CF was something that interrupted planned activities and opportunities to hang out with friends. Doing therapy and treatments was a burden.

Thankfully, I developed a group of friends who encouraged and supported me, in spite of myself. When all I wanted to do was prioritize my social life over CF, they would insist that I get my treatments done. I remember when they’d come to my house to pick me up, they would ask if I had done my treatments and offer to hang out and play video games if I still needed some time to finish them. For a kid who never wanted to keep his friends waiting because of his CF, this was a really powerful way to help keep me on track.

In college, my friends would often encourage me to stick to my treatment routine by walking back to the dorm with me in between classes. I would do my treatments, and they would take a quick power nap. They were happy to give me the time I needed, a few times a day, so that I could stick to my CF routine.

As I’ve gotten older, my friends have even helped me problem-solve how to stay accountable for doing my treatments. I recall one trip I took in particular. A friend asked me, “How come I didn’t see you do your CAYSTON today? Did you go to the bathroom to do it?” I replied that the ALTERA^® base was too big to carry in my pocket, so I couldn’t bring it with me. She then offered to carry it in her purse for me, which not only made it more convenient for me, but also helped me feel more accountable for making sure I actually took my treatment!

Trusting others enough to talk about my CF was not always easy. Through activities such as sailing and skiing that required trust and communication, I established relationships that felt safe enough to open up about my disease and treatment. Once I felt more comfortable, others felt the freedom to ask me questions about CF, and these conversations occurred more naturally. This taught me that friends want to help. Whether that help comes from exercising with me or being a sounding board when I struggle through bouts of depression or anxiety, the support they provide is invaluable and often the thing I didn’t recognize I needed.

Whether that help comes from exercising with me or being a sounding board when I struggle through bouts of depression or anxiety, the support they provide is invaluable and often the thing I didn’t recognize I needed.

My Tips for Building a CF Support System

Through the years, I’ve learned some important lessons about building a support system I can rely on that I want to share with you:

• Allow friends and family to help, even with the small stuff. Don’t let pride get in your way. Even if you think you can do it yourself, allowing others to do even small things to help gives them a sense of purpose and importance and shows that you love and trust them.
• Exercise is a great source of “bonding.” Going for a walk, run, or bike ride, or to an exercise class can be a great opportunity to bond with people you care about. In addition to the health benefits, it’s a great time to talk and share. It also often provides a great opportunity for them to ask questions about how you’re doing and for you to open up about how you’re feeling.
• Let others see you do your treatments, especially a roommate, boyfriend, or girlfriend. It’s easy to keep many aspects of CF hidden. Sharing the realities of your treatment routine will help others understand what you contend with day in and day out. Take pride in the amount of work you do to stay healthy. In my experience, helping others to understand what you need to do to help maintain your regimen creates respect, not pity.
• Accept CF as part of your life. Exercise, eating well, following doctor’s orders, and having fun are all contributing factors to a good life, with or without CF. So, too, are friends and family! The more open you can be with your friends and family about how CF is affecting you, the more support they can provide in both good times and bad.
• Surround yourself with people who inspire you. Be selective about those you choose to spend your time with. Build relationships with people you admire and who motivate and support you. There will be those you come across who may feel pity for you or choose to leave you out. Remember, your time and energy are valuable. Only share yourself with those who deserve it.

I choose to invest in building relationships that make my life better and happier. There are aspects of my life that are not always fun. Creating a support system of family, friends, and healthcare providers that I trust and can talk openly with has been critically important for me as I manage CF. Over and over again, I have found that this team of people enhances the happy and joyful times in my life and helps lighten the load during the difficult times.