It being IBD Awareness Week and all, I thought I’d share a great UC website as well as an email from its owner. This morning, Adam from IHaveUC.com sent the message below to all of the folks (including me) on his listserve. In it, he encourages those of us with UC to tell others what it’s “really all about.” The more we educate and get people talking, the closer we are to finding a cure. So, even though it’s not the most glamorous topic to blog about, I, too, will continue to tell others what UC is really all about. Thanks for the email, Adam.
ALRIGHT, SO HERE’S THE DEAL, last night I was over at a friends house for dinner (my wife was out with her girlfriends at some Czech meetup group deal in Mountain View) and I had a pretty crazy realization.
Even though I thought these friend knew all about my colitis, and all of the symptoms that go along with it, I was wrong. I must have left some things out.
We were all sitting down at dinner, and somehow the topic of the iHaveUC website came up. My buddy’s wife started asking me about a few things…one thing led to another and I was reading off somebody’s story with an iPad over dinner.(that’s what you’d expect from me right:) Like most of the stories on the website, they start with an introduction, then a section about symptoms.
I started reading “This went on for 2 years, on and off the Prednisolone to stop the bleeding, toilet 20 or more times a day, taking Imodium just to go to work”, and then I read out a bit more, but since we were eating dinner and looking at iPAD’s, something told me it wasn’t the time to get into the story much longer.
There was total silence.
Then, after a few seconds, my buddy’s wife asked if I also had bleeding when I was real sick several years ago. “UH, Heck Yeah”, I told her. “I was bleeding like crazy for weeks and weeks, of course I was bleeding.”
It’s one thing to be talking about my “old symptoms” now. Of course it’s easy to tell friends and family that things were awful and really bad “back in the day when I was severe”. It’s easy now to talk about it. But what if I was still severe with nasty UC? Would it still be easy to talk about?
The answer might be “NO”, but at the same time, it can also be a “YES”. That’s up to the UC’er.
One thing is for certain. This disease is not something that the average person learns about. Average people who don’t have UC don’t go reading up on google, or youtube, or the iHaveUC site about this funny thing called ulcerative colitis. Outsiders to UC just don’t do that for shits and giggles, at least I hope not right!
So guess what, I’m happy to report to you that getting the real deal message across is our job. That’s right, the UC’ers of the world have some more work to do. We need to let others know what its REALLY ALL ABOUT.
Once you explain the bloody details that active ulcerative colitis can often mean blood flying out of your poop hole and into the toilet for weeks and months on end, that type of thing sticks into people’s brains. And especially if you follow up with telling whoever you’re talking to WHAT YOU THINK, and WHY YOU THINK this is all happening.
If you explain the dirty details about active UC symptoms early on, I can promise that when you’re sitting down to dinner several years later, symptom free and feeling great, the person you explained UC to before won’t be asking you “Did you have bleeding like that other UC person…?”
Just like everything else with this disease, the choice is always UP TO YOU. You can tell people the real deal about UC, or you can hide the reality. I think its better to educate the whole story. And you know what, you’re friends are interested in the details…more than you’d think.