“I am not my cystic fibrosis”

Project Description:

I was diagnosed with Cystic Fibrosis at age 5. For CF patients, this is late to be diagnosed. In a way, this was a good sign, meaning my symptoms were not “as severe.” However, that did not change the statistics for me, including the average life expectancy, which at the time was early 20s. Since then, my life has been a game of numbers and statistics: life expectancy, lung function, oxygen levels. I try, at all costs to not think about these too often, but the idea is almost always at the back of my mind.

I am confident in myself, and know that I am much better off than most CF patients and I try to always share that positivity with others who ask. I need to learn to confide in others when CF is getting me down. It is, and always has been, hard for me to show that vulnerability to others, but I am trying.

There are also aspects of my life with CF that have taught me a lot about myself, and have caused me to have a better understanding of my priorities in life. But that does not mean it does not make every day any easier. I almost never talk about this aspect of the disease because I do not want to get the pity and looks I get when I do. I always get the response of “but you’re so healthy” or “the age is always increasing,” but that does not erase my reality. I am a person with CF, but that is not all of me. I am confident, smart, artistic, and athletic and that is what I want people to see, not the stereotypes of my disease. I had a friend who was taught in high school that people with cystic fibrosis cannot play sports, and I was appalled. I don’t want people to believe those stereotypes; I want them to see me as a person.

Even with all the strength I feel in myself, CF will always be my weakness. Even with new treatments and drugs, the average life expectancy does continue to increase. This year, that average is 37. I can only hope that number starts to more rapidly increase, but until then, I am aging faster than that number is increasing and I do not think that will ever stop being my biggest insecurity.