How I encourage autonomy and self-empathy in my CF child
My attitude toward the disease has had a big impact on my daughter

“I hate my treatments. I don’t want to have cystic fibrosis anymore.”
That statement came during a recent night with my daughter, Claire, who has the disease. I was trying to persuade her to complete her breathing treatment, but I was facing resistance. As parents of a child with cystic fibrosis (CF), we don’t have a lot of choice about such treatments. They’re a necessity.
But how do I express their importance to a just-turned-6-year-old?
Does our view of CF shape our children’s views?
I feel responsible for how Claire views her condition. In many moments, I tend to freeze up and worry if I’ll say the right thing.
For the first five years of Claire’s life, she seemed to follow her care routine without question. She’s learning every day how to articulate her feelings even more. Naturally, feelings about CF, a big part of her life, are going to come up.
On many days she says “CF is too hard,” “I don’t want to do treatment,” or similar statements. I struggle to balance validating her feelings with wanting to ensure she never feels her disease is more than she can handle.
For that reason, I spoke to our clinic’s social worker about how to talk about CF with our daughter. The social worker let me know that this behavior is typical of children who have chronic conditions at Claire’s age. They’re becoming more aware and noticing the disease’s impact on their lives.
I believe our family has always tried to shape Claire’s view of the disease in a manageable way. In doing so, however, I worry that we sometimes dismiss her hard feelings in order to soothe her. I attempt to stay balanced in our response to her feelings.
Approaching the must-dos with enthusiasm
I feel like this next piece of my experience might put some pressure on CF parents, but I’ve noticed that the way I outwardly approach things makes a difference. If I appear anxious or stressed about something, it transfers and translates to Claire. When I approach things with enthusiasm, I get way more buy-in. But it’s important to keep my enthusiasm genuine so that it doesn’t come across to her as unnatural or forced.
Recently, Claire started doing sinus rinses. The first night was filled with tears, screaming, and physical refusal. When she said she was done trying, I didn’t push it. I just told her we could try again the next night. The next night, when she said she didn’t want to try at all, I told her it was fine. It was hard for me to hold back trying to make her excited or force it on her.
Finally, on night three, she asked if she could try it, and I responded with a ton of enthusiasm. That feeling spread to her, and now she’s excited about doing sinus rinses! Yes, it took many tries, but each time I’d act so excited when she initiated wanting to try the treatment. I believe my mood and attitude affected hers.
Empathy for empowerment
Still, I try to keep empathy in mind as well. When Claire tells me she doesn’t want to do something, I try to put myself in her shoes, empathize, and be thoughtful in my response.
I aim to be as direct with her as possible and explain why we’re doing a particular treatment in ways she can understand. It also helps to connect the treatments to a larger “why.” She’s taking enzymes to make sure she can digest her food and convert it into energy — allowing her to play soccer! We do breathing treatments to keep her lungs healthy — so that she can ski in the mountains! I always give her a reason beyond “because you have to.”
I usually follow that with some form of validation, whether direct or indirect. “Yes, it sucks to have to take medicine with every meal. I hate when I have to remember my medicine at bedtime.” Or, “I realize it’s hard to sit and do treatment. Maybe we can pick something fun to do during it and make it go by superfast.” I feel like the validation piece is so crucial. I never want her to feel I’ve dismissed or invalidated her.
I’m learning every day as I go. As Claire gets older, the resistance and topics change. Each stage will bring new self-awareness. I find it a bit scary to witness, as her mother, but it’s also cool to see her growing into her own and taking ownership of her disease — even if it’s not positive every day.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
Claire
I'm so glad you're getting support from the social worker at your clinic! I am 45 and too often think "I don't want to do my treatments" or "CF is too hard." I can completely relate to Claire!