When medical anxiety creeps in ahead of a CF clinic visit

It’s the night before another pulmonary clinic appointment with my cystic fibrosis (CF) care team, and my brain fights against sleep. It’s a phenomenon familiar to so many of us with chronic illness: medical anxiety.

Nothing is wrong; I haven’t been experiencing new symptoms. The last round of antibiotics seems to have successfully cleared out the acute sinus infection that popped up this summer.

For me, it’s a direct effect of the unpredictable nature of the clinic. More than once, I’ve walked into an appointment only to learn I wouldn’t be going home that day. Instead, I’d be sent on a trip to admitting, en route to a bed on the CF wing.

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On one occasion, it was because my blood sugar was unreasonably high. I was discharged three days later — my shortest hospital stay to date — with a new diagnosis: CF-related diabetes. Another time, my lungs had cultured Mycobacterium avium complex, which would require months of a rigorous antibiotic regimen.

Over the years, my brain has learned that the clinic environment can’t be trusted. Without anyone trying to condition it to do so, it’s connected appointments to the likelihood of picking up more traumatic experiences.

Coping with unpredictability

I worry most about my pulmonary function test (PFT) results. My body is weird; it doesn’t like to follow the “typical” clinical patterns. My PFTs, in particular, haven’t always been a reliable indicator of infection or declining health. Sometimes there’s a dip in my lung function that goes right back up at the next appointment.

Though a PFT is objectively noninvasive, it can still be a tiring and traumatizing test to do. So I’m sure a lack of sleep can contribute to an off measurement. Or maybe it’s my period, as some studies show that the menstrual cycle can affect PFT results. Unable to ever figure out a reliable pattern to these dips, I chalk them up to having an off day.

But the doctors don’t always hear me when I tell them a lower number doesn’t necessarily mean a low point in my health. I advocate for using the PFT as one point in a sea of data. Some doctors are better at listening than others, and my clinic operates on a rotating-doctor system — meaning that, instead of having a dedicated physician, I could be seeing any of the doctors on the team.

As a result, whether my advocacy lands depends on how much that day’s doctor is open to hearing about how my body doesn’t fit into the mold of a “typical” presentation.

Yes, doctors are experts on the illnesses they treat. But patients are the experts on our own bodies. We know what our baseline feels like, and we know how it feels when something is wrong. I can tell if an antibiotic is working by how it feels when it kicks in — the infection being shaken up in my lungs, knocked loose. It feels like a lung version of when the weather starts clearing up, the clouds parting to reveal bright, clean skies.

So anxiety pulls at my subconscious in the nights leading up to any clinic appointment. As I try to get back to sleep, I choose to imagine that it’ll all work out for the best. I repeat it like a mantra. I remind myself that, probably, nothing bad will happen tomorrow.

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.