Guest Voice: Learning to manage anxiety alongside cystic fibrosis
Living with CF requires vigilance, but anxiety turns that into obsession
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Cystic fibrosis (CF) can manifest in countless ways, and no two experiences look exactly the same. For me, one of the most disruptive symptoms isn’t something that shows up on a pulmonary function test. It’s anxiety.
I’ve had respiratory infections and enough IV antibiotics for a lifetime. I understand what it means to be physically sick. But anxiety is different. It doesn’t wait for my cough to worsen or my stomach to protest. It sneaks in on good days, when everything is technically stable, and lingers anyway. It feels like even when my body cooperates, anxiety is waiting in the wings to sabotage the show.
As a teenager, I was adamant that I wasn’t anxious. I told myself my body was having an accurate, proportional response to negative stimuli. Of course, my chest felt tight before a pulmonary function test. Of course, I couldn’t sleep the night before a clinic visit, and it was completely rational to worry about a potential hospital admission weeks before a routine appointment. Right?
Research supports what many of us with CF are feeling. A meta-analysis found that 24.91% of people with CF experience anxiety. I could dissect the methodology and limitations, but the headline tells me enough: Anxiety is common in our community.
For me, anxiety usually manifests as overthinking and an inability to stop worrying rather than full panic attacks. I excel when I can identify patterns and plan ahead. I will tear apart and reconstruct any piece of data I can find to extract deeper meaning.
“Maybe if I review every decision I made in the two weeks before my last hospital admission, I’ll find the exact sequence that led me there. Maybe I can prevent it next time.” I would say this as if there wasn’t a complex system of bacteria, immune cells, and inflammation in my lungs contributing far more than that missed day of swim practice ever could.
Living with CF already requires vigilance. Anxiety turns vigilance into obsession. It convinces me that if I just try hard enough, think deeply enough, and prepare thoroughly enough, I can eliminate uncertainty. But chronic illness does not negotiate with perfectionism.
Finding ways to manage my anxiety
I am now preparing for graduation from pharmacy school, and while I have learned to manage the panic aspects of my anxiety, I have started to see how the uncontrolled worry has bled beyond CF into other parts of my life. I finish job interviews and find myself dissecting my posture, facial expressions, word choice, outfit, and a hundred small details that are well beyond my ability to change afterward.
I rely on the same habit I built with CF: If I can just analyze the data closely enough, I can find an answer. Never mind that I haven’t heard anything back yet, good or bad. My anxiety has already decided we are preparing for the worst possible outcome, because that is what I trained my brain to do when I was old enough to actively participate in my CF care. If I can anticipate the worst, I can’t be blindsided.
I don’t have an easy answer for anxiety. I wish I had a simple solution that could quiet it overnight. What I can say, to you and to myself, is that sometimes the things we go through in life teach us habits that once felt protective but no longer serve us. Overthinking and worrying about what is beyond our control are not signs of intelligence or preparedness. It is simply exhausting.
Talk to your healthcare team about your anxiety. Be honest about how it affects you. Anxiety may not be as visible as a CF exacerbation, but it can shape your quality of life just as profoundly. We deserve not only to live, but to enjoy living. And no amount of worry today will make the future clearer tomorrow.
Anxiety is common in CF. That does not mean we have to accept it as inevitable. With the right support and interventions, it can be managed, just like any other symptom.
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Calum McNicol
What a brilliant article! Thank you so much for sharing - it so eloquently expresses my own relationship with CF and other health-related anxieties.