An extraordinary silence

Why exactly are we, as IBS sufferers, silent? Why do we withdraw from people instead of sharing our burden with them? Why are we especially reluctant to confide in the most special people in our lives? Why do we put off going to see our doctor about this problem? Why do we use pseudonyms on IBS blogs and online community forums?!

Let me start out by examining what we could gain from breaking our silence. A few monumental achievements, both personal and global, come to mind:

1. We could GREATLY reduce our anxiety by knowing that people whom we trust support us.
2. We could identify fellow sufferers among our friends and relatives and experience the empathy we sorely need and deserve.
3. We could help and inspire others who are suffering silently to come forward, bringing relief and hope to others as well as ourselves.
4. By identifying ourselves in large numbers, we could eradicate the stigma of IBS.
5. As a large, concerned group of sufferers, we could get more research funding to find a cure.

I'm probably not telling you something new here. This is mostly common sense.

So what's the problem??? Why don't we speak up and get stuff DONE?

The problem with speaking up about IBS is the stigma referred to in #4. This cannot be underestimated. In a recent paper in the Quality of Life Research journal, scientists found that 27% of IBS sufferers "reported moderate to high levels of perceived stigma" (http://www.ncbi.nlm.nih.gov/pubmed/21424542?dopt=Abstract). That's a lot of stigma, and I'm sure that the percentage is much higher in the real world, when we include all the IBS patients that don't come forward to participate in scientific studies!!

As I see it, this stigma originates from 2 important sources.

The first source is the perceived correlation between IBS and mental disorders. IBS sufferers are known to experience anxiety and depression, among other psychological symptoms. Science has shown that OF COURSE there's a link between IBS and mental health because 80% of serotonin, a neurotransmitter critical to psychological well-being, is located in the gut! So obviously it's not our fault, or "all in our head," but the correlation between IBS and mental disorders is still there, and very real.

The issue here is that mental disorders by themselves carry a HUGE amount of stigma in today's society. Consider that up until recently, people with mental health problems were treated as outcasts and were housed in crude institutions. Now there are sophisticated psychotherapies, drugs, and treatment centers, but the stigma is still deeply felt. Just one week ago, there was an article in the New York Times about a famous psychotherapist who just recently "came out" as suffering from a mental disorder herself. She finally admitted to this at the age of 68, having been diagnosed at the age of 17! So the connection between the highly-stigmatized world of mental disorders and IBS makes it very difficult to wear "I have IBS" on your sleeve.

The other big problem, of course, is bowel movements. Poop. Is there ANY other bodily function that we would want to hide more than that?! Society is not a friend to poop. Poop is a source of humor for adolescent boys, but otherwise its discussion is not acceptable. You may have even seen someone peeing on the side of the road or at a urinal, but pooping is something that happens in locked closets. It's smelly, gross, hideous, un-ladylike, etc, etc.

SO. Given that we, as IBS sufferers, are presented with two enormous blocks of stigma attached to our disease (and probably more that I haven't thought of), how do we free ourselves from them?

How do we admit that our need for help has overcome our embarrassment? How do we get strong enough to say "Screw it!" and take action against this disease?

Because we really, really must.