Creating a CF Support System for Parents | My Cayston Community™

breck gamel

In our family, CF impacts almost everything. CF requires hours upon hours spent on treatments, taking pills, going to clinic visits, phone calls with the pharmacy, and managing medical bills. Our day starts with CF and ends with CF.

My son Bennett, who was born with CF, is almost ten years old. As much as we have normalized CF, we never escape the reality that it impacts everything we do.

One of the ways I’ve found to cope with the challenges CF brings is to build a support system of friends, families, and others to help us carry its weight. And of course, Bennett's CF doctor and care team are an important source of support for all medical issues and CF-related questions. Here are my tips for creating a thriving social support network.

Lean on the people you know:

• Share your story. People won’t know how to help if they don’t understand what it’s like to be in your shoes. For me, it is easier to talk about how overwhelmed I feel when people understand what my day-to-day life is like. We regularly educate our friends and family about CF, in person and through social media, so that they understand, even at a small level, the challenges Bennett and our family face.
• Be clear about what you need. This is really hard to do when you’re in crisis, so try to think about this when you aren’t stressed. Create an ongoing list; that way, when someone asks “how can I help,” you can hand them the list. Ideas for this list include: bringing a meal, caring for siblings, picking up groceries, mowing the lawn, etc.
• Communicate your needs often. People genuinely care and want to help but don’t always respond the first time. If someone has expressed interest in helping you and hasn’t responded to your first request, don’t be afraid to ask again.
• Articulate when you need encouragement, rather than advice or management. Sometimes people want to problem-solve for you when you really just need encouragement. Try to explain what emotional support you need from your support network.
• Take care of you, and be honest when you need to do that. Your support network may want you to support them at times. Be gentle with yourself and your ability to support others. A good support network will understand when you don’t have extra to give.
• Ask friends and family to just “check in,” even when you aren’t in crisis. As families of chronically ill children, we often just want to be seen and heard. Small words of encouragement can go very far.
• Remind your loved ones that CF is a marathon, not a sprint. There are times when things get rough, and a lot of people want to help our family at one time. Then, once everything calms down, they seem to forget about the support we might need just to get through our daily grind. Remind people that CF needs to be managed day in and day out. You need them, not just when your child is sick but also when your child is well.

Seek support from those you don’t know:

• Find experts in your community to help. I regularly see a psychotherapist who is a great resource for me. She can help me think through how to bring stress down to manageable levels when things get really hard. Bennett sees a play therapist, so he also has a place to process his feelings.
• Find others with CF online. Facebook and Instagram have big CF communities. Reach out when you’re feeling lonely. You’ll find you aren’t the only CF mom or dad up at night worrying about your child.
• Take a break from the CF community when you need to. There may be times when CF just becomes too much. This is when non-CF friends can be especially helpful.
• Find other families who are dealing with chronic diseases. They may be dealing with a different disease, but they will understand some aspects of disease management, especially the emotional toll it takes.
• Teach your child’s school community about CF. I like to go to Bennett’s class and help him teach his friends about CF. I find this ignites care and compassion, especially in children.

Teach others to pitch in to help provide care, too:

• Train others how to do what you do so you can have a break. I have found that when we manage the various aspects of this disease together, it helps make the load lighter. You can work with your family members, friends, babysitters, and even your child with CF to help minimize the burden. There are many things that can be delegated.
• Teach others how they can encourage you or your child. Small gifts of encouragement can really be meaningful (think: fun stickers, a flower, a pair of crazy socks, a handwritten note, your favorite candy, a silly toy). It doesn’t need to be big or expensive, just something that will result in a smile or a laugh.
• Ask friends and family to simply be present with you. It’s nice to have someone to sit with you when you’re giving your child his medicines, when you have to clean the masks and nebs, or when you’re just sitting in the hospital.

CF has impacted my family in a lot of negative ways, but I consider the support network we’ve made because of our journey with CF a huge blessing. It is my hope that all families with CF experience the rich blessings that come from creating an extended network of people who care.