Why IBS Can Be So Hard to Talk About and Treat
Last updated: April 2023
Recently I attended a meeting with my fellow IBS advocates. I hadn’t written a new article for a long while, and talked about why I wasn’t motivated. I discussed my concerns about the lack of studies and new treatments, how I can get motivated to write more about my IBS journey, and engage better with our readers. My team members said I should write an article about that, so here it is.
Scratching our heads over IBS
One overarching "problem" I pointed out was that not a lot is known about IBS, and during the 10 years since I started writing about it, few drugs have been developed to treat it. Few new studies have been done, let alone those that contain illuminating, hopeful musings about the future of IBS treatments. It remains a head-scratcher of a medical condition. Heck, even an itchy scalp is known to have several possible causes and treatments, and head-scratching alone can be enough to keep those itchies away! Wouldn’t it be great if scratching our heads over IBS wasn’t just done out of frustration but actually relieved the symptoms?
In the 21st century, we know so much about way more things than we knew in the 20th century. But not a whole lot more about IBS. We are almost as clueless about it now as we ever were, and that is nothing to brag about. So, what’s the problem? Why is this the head-scratcher that it is?
"Is it IBS or IBD?"
Some people think we have inflammatory bowel disease (IBD) when we say we have IBS. Inflammatory bowel diseases include ulcerative colitis, celiac, and Crohn’s. They are autoimmune disorders that cause organ inflammation, damage the intestines over time, and can cause an early death.
But irritable bowel syndrome (IBS) sounds almost like a joke disease. Although it causes no damage, it is excruciatingly uncomfortable and can keep me from venturing out until another day when my bowel is quieter. While IBS might not be capable of killing me or causing permanent damage, its unpredictable nature can play into my fears of having an accident and humiliating me in public. Not a fate worse than death, of course. But it can feel darn close.
Some symptoms of IBS sound like punchlines or have names that are funny words, such as hemorrhoid. Doesn’t it bring an involuntary upward curl to your lip? Poop is not so grown-up a word as hemorrhoid, and even mature adults can’t help smiling at the sound of it. As kids, we were shamed for saying crude words like fart, crap, and sh*t. As adults, we might think it’s silly to be uptight, but saying long-forbidden words is not easy and takes some practice!
IBS stigma is still real
Would it amuse you to know that when we have meetings, we still sometimes hem-haw and sit in brief but uncomfortable silences, flipping through our mental Rolodexes for synonyms that can keep us from using the best words, such as poop, sh*t, fart, and crap, in their function as both verbs and nouns? Why do we put ourselves through this? Still trying to save face, even in the face of acceptance from colleagues and fellow IBS sufferers? Afraid that our trusted deity is keeping score, ready to trounce us, or worse, for spewing words like doody?
Maybe, but this much is clear: There’s some baggage attached to describing bodily functions. However, I’m happy to point out that a number of us—and when I say us, that includes you—bravely use crude words to describe IBS. And the more we do that, the more comfortable we will feel reading forbidden words over time. This is one compelling motivation to de-sensitize ourselves to strong language. Doing so can free us to allow the truth to settle in. And as we all know, the truth can set you free.
There is so much more to this than I’ve covered here. Please do chime in with your thoughts, I would love to hear from you! It takes a village to sort out this, um, shite. Ach, I still have a long way to go!
Do you have trouble trying to balance your diet with multiple illnesses?
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