There are plenty of things about parenting with CF for which I wasn’t prepared. The mind-numbing exhaustion, for one. My daughter licking the hospital floor during one of my admissions, for another. I did try to stop her! But among the most difficult and unexpected parts of parenting has been dealing with my six-year-old daughter’s anxiety — especially when it’s so often triggered by my cystic fibrosis.

My daughter started showing signs of being anxiously tuned in to my health startlingly young. From the time she was four or five months old, when I got sick, she’d quickly become fractious and fussy, not wanting to be held by anyone but me. As she grew into a spirited, high-needs toddler, her anxiety manifested most often as aggression toward me: hitting, yelling, and biting. While many of my CF mom friends gushed about how their young children were sweet and thoughtful, bringing them blankets when they were sick and helping to sort their pills, my daughter at age three was spending my whole treatment time on my lap, screaming at me to stop and trying to pull my nebulizer out of my mouth by force.

Thankfully, at six at a half, my daughter is much more understanding of the need for me to rest, do breathing treatments, and have occasional IVs. But even now, her anxiety plays a big role in our lives together. She frequently struggles with intense separation anxiety, worried that any time we’re apart — whether that’s during the school day, while my husband and I have a date night, or simply when I put her to bed in the evening — my health might suddenly decline and I might have to go to the emergency room. When I’m coughing more because of an exacerbation, she watches me suspiciously, drilling me with questions about why my cough is worse.

While my daughter’s anxiety is definitely more than a normal amount — she has a diagnosed anxiety disorder — some level of anxiety is very common in children whose parents have CF. Being confronted by the daily realities of CF can cause a lot of different symptoms of anxiety in a child: panic attacks (which often look like large-scale tantrums in toddlers and babies); spiraling worries; obsessive-compulsive behaviors like excessive handwashing, aggression, or acting out at home or school; disturbed sleep; physical signs like stomach aches; and separation anxiety that goes well beyond a normal level. Even if your child doesn’t have an anxiety disorder, a major event in your life such as a hospitalization, exacerbation, transplant, or other health emergency can lead to a lot of anxiety in your child.

In this article, I wanted to share a few strategies that my husband and I have found helpful in parenting our daughter, as well as ideas gathered from talking to other conversations with CF parents.

1. Be honest and age appropriate. Anxiety is often exacerbated by fear of the unknown, and kids are usually much more perceptive than we give them credit for! Answering your child’s questions in an honest, but age-appropriate, way can help alleviate anxiety. I often joke that my approach to talking to my daughter about CF is a lot like my approach to talking to her about sex: I try to answer every question she asks me honestly, without deflecting, but also without elaborating or adding additional information for which she hasn’t asked. Practically speaking, this means that when she was three and asked me if CF was ever going to go away, I told her honestly that it was not — but I didn’t volunteer more information than that, like the fact that CF has a shortened life expectancy.

2. Involve them in your healthcare. My daughter frequently sees me doing treatments and sometimes even helps me load nebulizers or turn on my vest. When I’m on IVs, she loves to help flush my line. She’s even been my assistant when I’ve flushed my port before, handing me syringes when I needed them! I’ve taken her with me to clinic visits since she was little, and even pulled her out of school to come with me one month when she was feeling especially anxious about my health and I thought that reassurance from my CF team would help.
My daughter also has a “doctor kit” with medical equipment she finds fascinating — old nose clips from CF clinics, paper masks, empty syringes, an old nebulizer, and a disposable stethoscope. Sometimes when she’s struggling with my health, she’ll pull the doctor kit out a lot and pretend she’s giving her stuffed animals PFT tests and nebulizer treatments.

3. Allow them space and support for their emotions. It’s normal for a kid to experience heightened emotions when they’re trying to process something difficult. Sometimes this looks like tears or worries; other times, it looks like aggression or “acting out.” Give them space to feel whatever they’re feeling, and make sure they know that it’s okay to be sad, angry, upset, or fearful because of CF. Sometimes, when my daughter is really spiraling, I talk to her about how I also often feel mad, sad, or afraid because of CF and the effects it has on my life. I don’t allow my daughter to hurt me or others when she’s upset, but I try to be present and ready to talk, snuggle, or play with her when she needs me. We love to read books together, and I’ve found that seeking out children’s books about dealing with emotions serves as a useful tool in working through and talking about her feelings when they’re overwhelming her. Other ideas that can help a child process their emotions are therapeutic coloring (have them color a picture that represents how they’re feeling and tell you about it) or role playing with dolls or stuffed animals.

4. Make time for connection. My daughter’s anxiety levels are noticeably lower if I try to make at least a few minutes here and there to connect with her in whatever way she wants — playing dolls, reading books, or watching her do tricks on our backyard swing. When I’m sick, these moments of connection can become much harder, but I’ve found that in those moments it’s even more important for me to find ways to connect to her, even if that just means snuggling on the couch while we watch a movie.

5. Learn coping techniques together. Because my daughter’s anxiety plays such a big role in our lives, we’ve spent several years learning calming strategies to use when she’s having a panic attack or meltdown. The internet is full of resources for teaching kids deep breathing strategies and simple meditation or visualization! A key for us has been practicing these techniques when my daughter is not feeling anxious, so that she’s ready to deploy them when she is anxious. We have also really liked the What To Do When You series from Magination Press, which are workbooks focused on helping teach kids cognitive behavioral therapy strategies for anxiety. Our favorites are What To Do When You Worry Too Much by Dawn Huebner and What To Do When You Don’t Want To Be Apart by Kristen Lavallee and Silvia Schneider.

6. Try to preserve your child’s routine as much as possible. For many anxious kids, routine is king. My daughter does much better if she knows what to expect, both in the immediate and the more distant future. Of course, preserving her routine is way harder when I get sick, and we often have to make adjustments, like someone else picking her up from school. We try to talk about any changes with her before they happen, so that she’s prepared. Now that she can read, she especially loves organizational tools like calendars, to-do lists, schedules, and maps, and sometimes when she’s feeling anxious a good to-do list or schedule of what to expect that day can be enough to calm her down!
7. Involve the other adults in your child’s life. Make sure that other important adults in your kid’s life know what’s going on, whether that’s school teachers, family friends, grandparents, or aunts and uncles. I try to keep my daughter’s school teacher in the loop about what’s happening both with my health and with my daughter’s anxiety, so that she knows when my daughter might need a little extra intervention. I also share what things have helped us at home, so that she can employ the same strategies in the classroom.

8. Enlist professional help. Having a parent with CF is a pretty big deal and, for many kids, enlisting a therapist can help. For younger children, therapists can use techniques like play therapy, parent-child interaction therapy, sand therapy, and other methodologies to help kids cope with their feelings. Techniques like cognitive behavioral therapy can help equip older children with the tools they need to handle anxiety-provoking situations. A trusted therapist can also talk a child through difficult things they may be dealing with, putting issues like exacerbations, hospital stays, and transplantation into better perspective.

Whether a child has an anxiety disorder or not, it’s completely normal for children of CF parents to experience at least occasional anxiety. I hope these tips will better equip you and your child to get through the ups and downs of your cystic fibrosis together! s

Cindy is 31 with CF. She lives just outside Portland, Oregon, with her husband and spitfire of a daughter (who never makes CF care easy!). She is the author of Where the Watermelons Grow and the forthcoming Beginners Welcome, both with HarperCollins Children’s Books.