Fitting In

I just got done attending the first BreatheCon, a virtual conference for adults with CF. It was quite
something to get to meet so many other people with CF and hear their stories!

I have to say that I didn't say too much in each session beyond introducing myself. As I listened to some of the other people talk, I felt that I shouldn't share my story too much. Yes I have CF and that gives me several things in common with them, but I don't feel comfortable trying to get someone that's in their 20s with a 30% lung function to commiserate with me about just now having to start a "typical" CF protocol.

Attending BreatheCon 2016

At one session the discussion came around to some of these new CF drugs (that I don't qualify for because of my mutations) and how they've kept people out of the hospital and off of IV antibiotics for a year. How can I possibly come in and say that I've only ever been hospitalized and on IV antibiotics once in my whole life without sounding like a smug asshole? So I didn't say anything and just nodded in appreciation of how great these new drugs are for cystic fibrosis.

CF is already very isolating, but when you don't fit the "mold" of a person with CF it can be even more so. I walk this weird line every day, I'm not healthy because I do have CF, but I'm not sick enough to really be a part of the CF community and I'm not sure how to deal with that and I've honestly struggled with it for my whole life. I was really hoping to meet some other people in the same situation, but either they weren't at the conference or I just didn't end up in any sessions with them.

So I'm left feeling a little disappointed, but at the same time a little inspired by some of these amazing people that deal with so much on a daily basis and take it all with such grace. I can only hope that when it does come time for me to go through some of this I can handle it half as well as they do.