How I Beat Burnout as a Cystic Fibrosis Parent and Caregiver
Extreme exhaustion is common and valid when parenting a child with CF
As the clock strikes 10 p.m., my daughter Claire’s used nebulizer cups are sitting by the sink, ready for their nightly sterilization routine. All I want to do after a long day of working and taking care of two small children is go to bed, but as a cystic fibrosis (CF) mother, I have duties to complete before I can rest. It’s moments like these when I have to push myself to get it all done.
Parents today are balancing more than ever. As Psychology Today notes, parental stress is at an all-time high, due in part to the lingering effects of the COVID-19 pandemic.
As CF parents, our caregiver responsibilities take parenting to another level. We have to keep up with daily breathing treatments and administer medications. We schedule and attend doctor appointments, call insurance providers, and pay medical bills. The duties that accompany having a child with CF are overwhelming, even for the most organized people.
It’s almost inevitable that every CF caregiver will reach a breaking point. Burnout is something we all experience but rarely talk about. It happens when a caregiver has become physically, emotionally, and mentally exhausted from the stress and burden of caring for their loved one.
Acknowledging the heavy load
At times, I find myself in this position. According to a study published in 2022 in Pediatric Pulmonology, mothers of children with cystic fibrosis often experience a state of extreme emotional exhaustion. This can lead to depression, burnout, caregiver burden, and even negative attitudes toward their children with CF.
I never want my daughter to feel like a burden. I actually hate to use that word in association with the care I provide for her. But the fact is, managing CF care is burdensome in nature.
I once heard that even though a caregiver may carry their load well, it doesn’t mean that the load isn’t heavy. CF caregiving is heavy every day, especially for parents of pediatric patients. Some days are heavier than others. Every CF caregiver will burn out at some point, or even quite often. It’s normal and valid in our situation.
I used to try to ignore the signs of my own burnout. I would find myself in a state of complete physical exhaustion, usually ending up sick myself. But after four years as a CF parent, I can tell when I’m starting to get overwhelmed and need a break. Sometimes that looks like a getaway, but most of the time it’s not that glamorous. Simple things, such as texting another CF mom to vent or treating myself to takeout, help me work through those feelings of exhaustion. Other times, I directly ask for help.
I used to be ashamed to admit that I needed help with my caregiving duties, but it’s imperative that all caregivers acknowledge these feelings without guilt or shame. This exhaustion is not our fault. We are carrying a heavy load, and we can address it by finding healthy ways to take breaks or asking others to help us carry it. It doesn’t make us any less of a parent. If anything, it makes us better in the end.
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.
My daughter is now an adult and totally taking care of herself! She is such a wonderful woman! All the care giving when she was dependent on her family was very time consuming and many times tough, but it is so... worth it! She learned that the treatments and medications are a necessity part of staying healthy. Keep up the good work and be proud that you are teaching your child good and healthy habits. Love to you and your family!!