In the media worldwide, we know cystic fibrosis (CF) as a fatal lung disease where patients are bound to hospital beds and oxygen masks. While this is true, it doesn’t represent the CF community as a whole. Due to the complexity and many unknowns about this disease, it is difficult to put all of us into a single, organized box. There are other symptoms and long-term effects that are not brought up as much as their respiratory counterparts. Being born with CF, struggling with liver issues, pancreatic insufficiencies, GERD and constant stomach problems, most of my pain was managed outside of enzymes and the few other CF medications. 

Growing up, I got asked a lot of questions, specifically about why I never wore an oxygen mask or coughed to a degree outside of the norm. The truth is, it’s hard to explain because it’s not visible from my appearance of being so healthy. How do you explain to someone that yes, you can cough sometimes more than the average person; however, your manifestation of cystic fibrosis is one not commonly discussed and therefore not well-known. Every single person who lives with CF will not have the same health as another; some deal with my issues, others with CFRD and/or musculoskeletal difficulties.  

Explaining that my disease presented differently than what the public associates with it commonly felt harder than living with it. The off-hand comments and misconceptions showed me how detrimental stereotypes can be. When people only see one version of cystic fibrosis, those whose symptoms fall outside that narrative are often misunderstood or overlooked. My experience is just one example. There is no single way to live with cystic fibrosis. 

My experience inspired me to advocate. By speaking at events and sharing my experience, I hope to challenge misconceptions surrounding invisible chronic illnesses and encourage conversations that better represent the unique perspectives of the CF community. Through my advocacy, I have helped raise more than $100,000 for cystic fibrosis research, including over $15,000 through my own fundraising efforts. My goal is to help create a future where every person with cystic fibrosis feels understood and represented – not just those who fit the stereotype. 

By: Madison Gore