Controlling anxiety is a key part of managing my health with CF

It's tough to distinguish between temporary symptoms and more serious ones

William Ryan avatar

by William Ryan |

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At 31, I still love basketball, and I’ve been a New York Knicks fan for 25 years.

For the first 21 years of my fandom, the franchise was a model of instability and getting in its own way. I try to approach my health in the exact opposite manner, which is to say that I do so with similar determination and stability that the Knicks have had for the last four years.

As an adult with cystic fibrosis (CF), I find that maintaining stability with my health is often more of a mental battle than a physical one. Overcoming the anxiety and fear that come with living with this disease isn’t easy.

In January, I was hospitalized with pneumonia for a week for the second time in three months. Having pneumonia isn’t new to me, as I’ve battled it at least once a year for the past three years. However, because it reared its ugly head again so quickly, I’ve been on high alert for any sudden changes in my body.

Whether it’s coughing more one day than on the previous day or monitoring my stomach when it’s misbehaving (I had a sepsis infection in my digestive system in 2019), I’m viscerally aware of what’s going on with my health.

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Understanding the nuances

Deep down, I know the cough is due to my allergies acting up, and my stomach is probably reacting to something I ate.

Since I was a child, my life has been all about maintaining my health and trying to get better, while doing my best to avoid getting worse.

I wish it were easier for me to tell people about the daily stressors that CF causes me, but my loved ones already worry enough about me in addition to handling issues in their own lives. I don’t want to burden them by opening up about my thoughts about what’s happening with my body as I get older.

Along with adopting a healthy lifestyle, I hope to participate in future clinical trials that may benefit people like me, the 10% of us who have rare, nonsense gene mutations and don’t qualify for treatment with CFTR modulators. I want to be part of something that helps not only me, but also others like me. To participate in many of these studies, I must maintain a certain baseline of health, so I often obsessively monitor my weight and my cough.

I know that if excessive coughing one day extends to multiple days, it probably means I need an antibiotic to fight off a lung infection. But to participate in one of these studies, I’m told I must be off antibiotics for a month ahead of time. It can be a fine line between coughing from allergies and from a lung infection, so I must ensure that I’m reacting properly to the situation without letting anxiety get the best of me.

At the end of the day, it’s about understanding that a few extra coughs or a gassier stomach may be temporary. It’s not the end of the world, and I’ll be OK. I must take life on one day at a time and remember that today’s issues doesn’t guarantee that tomorrow’s will be the same.

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.


Helen Palmiero avatar

Helen Palmiero

Wow, Will!... a fine line indeed! EVERY aspect of your CF must be monitored constantly, even types of coughs - so much! Please don't ever think you're burdening us. We all love you and we care & will do anything we can to help. You've taught me many new things in this latest column of yours, yet again. Love, Helen

Dannie Reynolds avatar

Dannie Reynolds

It’s a lot to do daily. As a CF patient we have to adjust things to be able to do treatments. Seems you’re doing it well! Congratulations!!


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