WEGO Health recently held the latest in our series of Health Activist Roundtable sessions and focused on IBS (Irritable Bowel Syndrome) in recognition of IBS Awareness Month. We brought together several Health Activist leaders from the online IBS and IBD communities and asked for their thoughts on the IBS community, the myths associated with their community, and what they thought other Health Activists needed to know.
Here’s what we heard:
There’s a misconception that doctors know the causes of both IBD/IBS or that our community will help patients be diagnosed. That lends itself to thinking that something might work as a cure for everyone. In reality, we don’t know what exactly causes it and it’s a long process to diagnosis, especially because IBS & IBD are so close.
– Jeffrey from http://www.ibsgroup.org and @IBSGroup
When they’re first diagnosed, a lot of patients are looking for what they should and should not eat and looking for food as a cure. There’s a misconception that diet alone can cure your disease. It’s an incurable disease.
– Sara from http://agirlwithguts.tumblr.com and @Sara_Ringer
A lot of people think that it’s just about poop or embarrassing bathroom stories. It can affect your joints and cause fatigue and pain and it really affects the rest of your body. It takes a toll on you because of the effect it has on your entire body.
– Jackie from http://bloodpooptears.com and @jackiezimm
It’s not a one size fits all diseases. Every person that has it is affected differently. No matter if they’re on the same medication or have had the same surgery, everyone with it is affected differently. So there’s a misconception that if one person has success with a diet, you will too.
– Jenni from http://jennisguts.blogspot.com and @JennisGuts
For the full report on what we heard from IBS and IBD Health Activists, download our IBS/IBD One Pager now.