I used to be in the crowd that says, “CF may be a part of me, but it doesn’t define me!”
I was young. I was naïve. I was failing to realize what I was actually dealing with.
The moment something influences decisions, that something is a defining quality. Some people use the word identity.
Each morning I wake up I decide to take my medications and do my treatments. Living with cystic fibrosis dictates that decision and influences that same hour each morning.
In other ways, my hatred for the Chicago Bears is influenced by my love for the Green Bay Packers. That’s a defining characteristic of mine. Being a boyfriend to my girlfriend influences my decision to stay off Tinder. That’s part of my identity.
I’m not sure why for so many years I would say, “CF doesn’t define me!” It’s a common thing across our community… lots of people say it.
The blood I occasionally cough up is fairly defining of who I am.
Maybe it was the desire to be an inspiring individual? After all, those of us who are chronically ill are immediately deemed inspiring and courageous. Parts of our identities?
There are other pieces of my life directly related to CF that are defining. The g-tube is the big one. There’s a damn tube in my stomach. If that’s not contributing to my personality in a big way, then I don’t know what is. Put simply, I look at food much differently today than I did 10 years ago.
Fundamentally, CF is engrained in my body. It’s not going away, even if it’s one day cured. It will forever be part of my DNA.
Aside from the physical side of the condition, CF is manifests itself throughout different places in my life. The disease influences things like travel and social plans, working opportunities, habits, hobbies and routines.
Working is the obvious one, but aside form that CF doesn’t just take a back seat.
Generally speaking I’m not going out drinking with my friends on a regular basis. My health is at the point where a BIG night out, more times than not, leads to pulmonary exacerbation (PE) – case and point my trip to Boston this past Fall for the BC-Notre Dame football game.
To the same point, traveling is also influenced. I’m not going to sign myself up for a trip that is bound to impact my overall health – unless it falls somewhere within my personal priorities to overlook some risk. A trip to Thailand – many hours from a CF clinic I’d trust – is not anywhere on my list of priorities. I will not be going to Thailand because of my CF.
As much as we seemingly don’t want to admit CF impacts our livelihood, it does. It really does.
It causes us to push harder than healthy people, it makes us rely on our ability to look at challenges as simple obstacles, it requires us to make mature decisions at young age, it feeds our desire for freedom, and it certainly shapes the way we look at other people.
Yes, CF is a defining aspect of my life, and it always will be – whether my life continues to grow more and more challenging, or if it suddenly gets a lot easier. Living each day with CF defines who I am, on the inside and the out. There’s no running away from it…. we have to accept it.
