Posted 6/23/2010 10:33 AM (GMT -6)
It's a good article, but I'm wondering about the 7% figure for IBS in the US, which is a lot lower than the 10-15% or even 20% that other reputable sources use. 10-15% is in H Res 1309. Obviously, they are all estimates and no one can say exactly, but I wonder if that was a misprint or if UNC or Web MD is using a different standard or study.
I've not had IBS as long as Shawn, but I do talk about it both within and outside the IBS community and try to do a lot of awareness and advocacy on my own time and at my own expense. I see it as essential in my case, because even though my diagnosis was almost immediate and correct, I have never had "textbook" symptoms and concerns that respond adequately to existing treatments. Also, I have had the advocacy background for almost my entire adult life.
In my experience, many people are concerned, and do want to be helpful, but once I got beyond the stage when giving me name of their gastro or integrative medicine specialist, or an article on diet or probiotics or whatever, stopped being new information I could use, they didn't know what to do anymore. They know that I've made connections in the IBS community, that I have access to a lot more detailed information than the general public before it makes it to the general media and they assume I've heard of things before. And usually they are right.
Like many of us IBSers, many non-IBSers wish there were simple, linear answers too. They see us uncomfortable and it's "Oh, would you like to sit down? Can I get you some water? Just relax. Should I call 911? And unfortunately, none of that helps in the long run, at least for me. So the non-IBSer at some point shuts off and can only deal with listening to the IBSer talk about IBS so much at any given time. I've learned I can talk about it, but usually not to the same set of people all the time, and some of them tend to forget that even if I'm not talking about it, I'm still dealing with it.
I've asked non-IBSers to do concrete things too, like forward IBS or H. Res 1309 information to their own contacts. A few of them do, but a lot of them haven't made the leap yet to thinking it has anything to do with them or anyone else they know besides me. Most of it is well meaning, "Oh, I'm sorry you're not well. I hope you find something to help you. I admire your perseverance, etc." but that's as far as it goes. And many of these same people will leap up unasked to help a person or family dealing with a different diagnosis and talk about what a "good attitude" that person has because that person is not sounding loud alarm bells about the unmet needs of IBSers, as I am.
I think any major change in public perception is going to have to come from more IBSers being willing to step forward publicly, from professionals in the FGID community being more attuned to the needs of those of us who don't neatly fit the usual assumptions in terms of symptoms, psychosocial history or concerns, etc. On the one hand, I see the IBS community doing a lot to try to get IBSers out of the closet, properly diagnosed, accurate information about treatment options, etc. All that is good. But on the other hand, there's this other reality of those of us who are fully educated as to what's out there right now and have been there and done that, but it simply isn't enough. And given so little media attention, funding, etc, it's hard to get out both messages out. To people who do not understand IBS, those two ideas are very contradictory, which doesn't help matters either. I hope H. Res. starts to change things. I really do.