What life with CF is like, and why it defines who I am

Sometimes I don’t know where cystic fibrosis (CF) begins and I end.

I’ve lived with the ups and downs CF has brought since I was diagnosed just three months after I was born. I recently celebrated my 32nd birthday. I used to hate my birthday. I don’t anymore, though, as it’s a time for me to reflect on who I used to be and where I want to go.

The past year has been the toughest I’ve had in a long time, as I was in and out of the hospital every three months. Now I’m trying to figure out if CF defines who I am. It’s a true battle of nature versus nurture, and sometimes I’m not sure who’s winning.

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There’s a common phrase in the CF community that states, “Having CF does not define who I am.” Yet I’d argue that it does define a large part of who I am, how I think, what I do, and how I view the world.

They’re not scarlet letters, so to speak, that I wear with shame, and it’s certainly not my fault I was born with “faulty” genetics. But to deny that CF defines me at all is, in my opinion, irresponsible. Whether I’m carrying around supplemental oxygen tanks, experiencing the infamous CF cough, or taking medication to digest food, the effects of my CF are frequently noticeable to the public.

That might generate sympathy from others, or in some befuddling cases, derision from those who discriminate against people with disabilities. But what isn’t noticeable is the intense pain that can come along with the disease. Yet we’re expected to persevere and fight just to get through the day. Added to that are the side effects of the various medications we have to take.

Additionally, I’m sure that everyone with CF has a story about the first time they had to confront their own mortality or explain to others why we’re different from them.

I’d argue that CF has made me a better person than I might’ve otherwise been. It’s helped me understand the gray areas in life and the different perspectives people have. It’s helped me understand what it’s like when society doesn’t treat everyone equally. And it’s taught me that life is fleeting and can change on a dime.

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.