I realized something recently about my ostomy. It’s actually something I’ve dealt with pretty much ever since I first got my ostomy, but I didn’t really understand what it meant until last week.
So I get very self-conscious when my ostomy bag shows underneath my clothing. And honestly, it doesn’t happen that often, but I definitely have a few outfits where it does not hide very well beneath or I have times when the bag gets a little full and it puffs up. Now I realize that you may be thinking that this is not a particularly weird way to feel and is most likely anyone’s normal reaction when they have an ostomy. But let’s remember now… I pretty much tell everybody in the world that I have an ostomy.
I mean I blog about it, I put updates on Facebook/Twitter/Google+, it’s listed in my LinkedIn profile, I go to Crohn’s and/or ostomy related events as often as I can, and I talk about it pretty openly with just about anybody… so why am I so worried if someone can see that I have an ostomy? Let’s be honest, they probably already know that.
But I got that really self-conscious feeling the other day when I was wearing this shirt that did not hide my bag very well and I had to stop myself and ask that very question. That’s when it hit me: I’m not really worried about people knowing I have an ostomy. I’m worried that people will see it. But there’s more to it than that.
Probably my biggest goal/hurdle as an ostomy advocate is showing people that having an ostomy is not something to be scared of. It’s not something that is going to ruin your life or even change it as much as you might think. Prior to my surgery, I thought I was going to live my life in oversized, unfitted clothing. But I was wrong. I’ve said it before, but I have not thrown out one piece of clothing since I got my ostomy. I may have changed the way I wear things slightly, but there is nothing that I wore beforehand that I can’t wear now.
I want people who do not understand what having an ostomy means to realize that if someone wants to keep an ostomy hidden, then they can keep their ostomy hidden! It does not have to be on display. It is not something that everyone will notice and point out. But when I am walking around in a shirt that doesn’t hide it particularly well, I feel that it’s contradicting everything I have said. If people can see mine and then I try to explain that ostomies are easily kept private, they may come back with the fact that they’ve been able to see mine before. And that kind of concerns me.
Maybe I’m being silly. I probably am, but I do feel that pressure of being a representative of those living with an ostomy to those who may not even know what one is. I know I really shouldn’t worry about it so much, especially when I’ve realized a couple more things… First of all, it’s never usually as bad or as noticeable as you think. And secondly, most people are too wrapped up in their own worlds to even notice. (I don’t mean that to sound so cynical, just honest.) And on top of all of that, this is an easy fix. I will still wear that same shirt again, but I’ll do it a little differently next time. I feel like that’s another blog post for another day.