One of the things I see in the CF community is the desire to label or define themselves by their disease. This bother me. I see lots of Facebook pages with “CF (kid’s name)” or “So and So’s CF Journey” or “CF Mom”, or CaringBridge pages with the same sort of titles.

If my parents–or anyone else–ever did this to me, we’d be having words.

Why on earth do people choose to define themselves by their disease? Does it make them feel better? I guess some people think it brings awareness, but to me it’s the opposite. What brings awareness is when you live your life in the best way possible, without constantly doing a I HAVE THIS WRONG WITH ME drumbeat. To me, having a “CF Name” page is just about as sensical as having “I have blue eyes” name page. So what. Who cares? Why do people let this define them?

I am, obviously, not a CF parent. But if my parents did this, I’d be having a talk with them. It drives me crazy to see and hear these things, like the only thing worth knowing about these people is that their genes are off.

Also, I’m not a hero, OK? I have done absolutely nothing incredibly brave in my life. I’ve lived the life I’ve had and that’s it. That doesn’t make me anymore heroic than the person reading this.

I’m writing a book about my experiences, and I’m in the process of sending our proposals to agents. I want awareness, obviously. I want a cure. But I don’t think the way to do that is to trumpet THIS IS WHAT IS WRONG WITH ME. I think it’s to tell my story about how I tried my absolute best to live a great life, and this is what happened on the way; that you don’t have to have this victim mentality. I want more people to be organ donors. I want people to live healthy lives. But I would never call myself a CF anything, or a Cyster, or whatever. That drives me nuts.

A survivor? Yeah, you can call me that, given that I’ve got more lives than the average cat. But let’s stop defining people because of a disease, and start defining them based on other things, things that are much more valuable.




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