Guest Voice: Learning to embrace the label of ‘cystic fibrosis patient’
I'm no longer hiding from how my chronic illness has shaped me
One of my biggest regrets is letting others define my cystic fibrosis (CF) and letting those become bad words for myself.
We use labels to simplify and categorize ourselves. Some labels I reach for faster than others, such as oldest daughter, pharmacy student, healthcare worker, dog lover, and nature enthusiast. It takes a minute before CF even comes up. And yet, my experience with the disease has shaped my life more than many other labels. Before I was a doctor of pharmacy candidate, I was a CF patient, and I will remain one until a cure is found.
“Chronically ill” can feel like a dirty phrase. It brings to mind hospital beds, sickness, mortality, and, the most dreaded, loss of control. Avoiding that label felt like reclaiming control over my own story. As a healthcare student, I feared being seen as less capable, more fragile, too emotional, or, worst of all, unfit for my chosen field.
For the first few years of pharmacy school, I danced around CF. Sometimes I was honest, but I always gave a manicured version of the story. I was never really that sick; I just had a fragile stomach, it was never that bad. Half a dozen small lies to dodge the scarlet letter of being chronically ill.
The illusion came crashing down around me faster than I wanted to admit. I lost two family members during school and withdrew into my grief. I went to class, worked, and went home. I told myself I was functional, but the missed CF medications and pile of dirty dishes said otherwise.
When someone attributed my change in demeanor to medication side effects, I realized they were drawing conclusions based on a label I had tried to dodge for so long.
No matter how fast I tried to run, chronic illness caught up to me.
CF is not a dirty secret
Allison Given is no longer ashamed of the label of a CF patient because that experience has helped her become a better healthcare provider. (Photo by Allison Given)
That moment forced me to reflect on everything. Why did I try so hard to avoid my CF when I couldn’t escape it anyway? I was always going to be chronically ill and, in the eyes of some, lesser for it. But CF taught me strength, discipline, and resilience. It made me an advocate for myself and others. It made me a better healthcare worker.
CF didn’t care if I was tired before school; I still had to do my nebulizer treatments and respiratory therapy. The same discipline carried into my studies and work. It didn’t matter if I was tired after a long week of classes; the patients under my care needed my best effort, and I knew how to give it. Leadership came naturally to me after a lifetime of watching trailblazers in the CF community. I knew how to chase a vision of a better world because I watched others with CF do the same.
As I finish the last year of my doctorate and prepare to add pharmacist to my list of labels, I’ve also learned to embrace another one: CF patient. CF has been foundational to how I understand myself, healthcare, and the world around me. It gives me a perspective I wouldn’t trade for anything.
To anyone starting out in your career and feeling the urge to hide your CF, I hope you don’t. It’s not a dirty secret. It is part of you, and even if it’s not ideal, it has shaped you in powerful ways. You’ve been through so much and continue to move forward, and there is nothing about that to be ashamed of.
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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.
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