There’s a certain language exchanged comfortably among the IBD community - we understand words like ‘ESR’ and ‘biologics’ and ‘PICCs’, words that invariably bounce over the heads of many others. And in some ways, I’ve found it becomes an adoptive personality, a mask if you will, that is put on me around others at times.
This may explain it better: at a recent family friend’s function, I was introduced to a man who’s a GI. So of course we must have a lot in common, right? There’s only so much I can say about my life before hints start to rain down about my IBD. I tell him I want to be a pediatric psychologist for chronically ill children. He smiles and notes that it’s very specific, why he asks. Sigh - here it comes.
Just because I have IBD doesn’t mean I am IBD. There may not be an ‘i’ in team, but there’s certainly one in our disease. The depth of my life can shrink away in replace of the basic facts: 20 year old female, 8 year history of Crohn’s, permanent ileostomy. But those are only a handful of facts about me - do you see the kid next door who had lice two years ago being summed up as only that?
The blame is scattered and not easily absolved. In part it’s society, not understanding that I’m a person behind my illness, it part it’s the fact that I’m always in hospitals and that a large part of my life is about my disease, and in part, it’s about me. I have chosen to be involved with the CCFC and YAC, I choose to contribute to this blog and bare my life to a willing reader.
I would sincerely hope - and if this is inaccurate, please someone tell me - that someone reading this blog says, “Okay, this girl goes to school away from home, has long-term career goals, does yoga and tries to run, and is a little obsessed with Grey’s Anatomy - and has Crohn’s and an ostomy.” I do have IBD, but I’m a million gazillion other things - just as like you.
Sometimes I wonder what my life would have been like without IBD. And this is what I’ve come up with - I think I’d still be determined and gutsy (only with more actual guts...), but I’d be on a different path. My life isn’t more or less meaningful for having IBD, that choice is up to me and what I decide to do with my life.
I wouldn’t trade anything for the community of gutsy people. You are inspiring and supportive and you empower me with your spirit. But you are still you, you are still amazing on your own, and you should never have to compromise who you want to be for who you think IBD makes you.
Because remember, anyone can have IBD - but nobody else is you.