It's all in my head.

Some IBS patients have the unfortunate experience of being told that their disease is "all in their heads."

Before I get irate, let me guess why this explanation would occur to medical professionals.

The origins and treatment of IBS are unclear, so it's a scary disease for a doctor to deal with. The "all in your head" conclusion is a convenient one. Heck, there isn't even a real test for IBS; you get diagnosed with IBS after tests have ruled out everything else. The Unknown is terrifying to a person who is supposed to know a lot.

However, when faced with the statement "It's all in your head" (and I have been!), my response is:

-Um, I don't think so. Please read the research. Thanks.

-I really don't think so. Twenty-five million people are inventing the same symptoms for themselves? That arise from many of the same trigger foods and drinks? Hm.

-If by some chance it is all in my head, I really don't care! Please fix it anyway! Please tell me by what mental pathway I am creating this hell for myself and what I can do about it. The physical symptoms are still the same no matter where they come from.

The world is not flat. Just because we haven't acquired enough knowledge on a subject does not mean we should make up stories to explain it.

Write your representative now in 5 minutes or less! It's private.

An INCREDIBLY important bill is now on the desks of our representatives in Congress. The bill, HR 2239: Functional GI and Motility Disorders Research Enhancement Act, would:

-increase funding for functional GI disorders at the National Institutes of Health (NIH)
-expand public awareness of these diseases through health campaigns, etc.
-tell the FDA to accelerate treatments and drugs as soon as the science is viable
(if you want to read the text of the bill, go to http://www.opencongress.org/bill/112-h2239/text)

WOW!!!!

Here's what you do:
1) go to http://www.congress.org/register to set up an account (just email address, password, and ZIP)
2) wait 1 minute for an email to appear in your inbox
3) click on the link in that email and sign in
4) see your representatives listed on the left side of the page, click on "write this official"
5) write him or her an email using the easy form!

This process is PRIVATE. Your information will not be displayed anywhere on the web, and you won't get mail unless you choose to sign up for it. You can sign the letter with just a first name, or whatever you want.

Feel free to write your own letter, or copy and paste mine:


Dear [Name of Representative],

Thank you for your tireless efforts in Congress on behalf of me and my
fellow constituents!

Please support HR 2239: Functional GI and Motility Disorders Research
Enhancement Act. I have IBS, a debilitating disorder which interferes with my career and social life on a daily basis. I am only 30 years old, and while my mind is vibrant and longs to make a real contribution in this world, my body struggles constantly. *[personalize this last sentence or just leave it out]*

Of course I am not alone. Millions of Americans suffer from IBS, which costs our country BILLIONS of dollars in sick days and health care. Yet this disease and many other GI disorders are underfunded.

You are our voice. Please support the Functional GI and Motility Disorders Research Enhancement Act.

Sincerely,


[Your name]


Easy as pie! Happy Fourth of July!!


Thanks very much to IBS Impact for bringing this to my attention. Visit http://www.ibsimpact.com/.

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.