Today is World IBD Day 2012: a day to spread awareness of Crohn’s and ulcerative colitis. It’s a perfect example of what I hope for this site to be someday. Even though there have been previous World IBD Days, this is the first one I have personally taken the time to recognize.
There are a number of reasons that I started this site. One was to be able to keep people updated. I’ve seen such an outpouring of support over the past weeks and I wanted to be able to let everyone know how I’m doing and this is the most efficient way to do that.
Secondly, I did it for myself. For years I never talked about my Crohn’s. I wouldn’t NOT talk about it. If someone asked me or if it came up in some way, I wouldn’t avoid it, but it wasn’t usually information that I would volunteer. Last July I posted “My name is Stephanie and I have Crohn’s Disease” on my other blog. It was the first time I really put it out there and it was a good feeling to finally talk about it. Since then, it’s become a form of catharsis for me to be able to share my feelings and experiences.
Another reason is because I find that since so few people want to talk about it, there are not many places to go to for help and reassurance. I hope that I can be a voice that shows you are not alone. I’ve been blessed over the past weeks to find others out there who are dealing with the same things that I am. I’ve spent years not really having anyone I can relate to. It has been very encouraging to find others who know what it’s like. I hope that I can provide that same encouragement to others who feel alone and as though no one understands.
And finally, it’s because I have found that very few understand this disease. Nearly every time I tell someone I have Crohn’s Disease, they tell me they know someone else who also does, but they don’t really know what it means. In the US alone, 1.4 million people live with IBD (Inflammatory Bowel Disease, which includes both Crohn’s Disease and ulcerative colitis). And nearly 1 million people in North America have ostomies, with another 70,000 having surgery each year. And the numbers are growing. And with that, it’s becoming more important that people understand IBD, because odds are you know someone who suffers from it. (Well, most of you know me, so you’ve already helped prove my point!)
I’m just getting started with my site, but someday I hope for it to be more than a blog. I hope it can be a platform for advocacy and change. I’m in the early stages of working on how to do that, but it has become a passion of mine over the past months and especially the last few weeks since I launched the site.
I pray that as we move forward with awareness and research, that those who live with these diseases will no longer feel the shame of the stigma that has too long been attached to IBD. And I hope that today on World IBD Day, you’ll think of those you know, and those you don’t, who suffer from IBD.
For more information on IBD and for some of the blogs that have been a great encouragement to me, check out the links under Crohn’s Resources.