I’m having an IBS flare up. That’s the nicest way to describe what’s happening to me. There are no polite, socially acceptable scripts for talking about bowel health. As a friend put it, “No one wants to know between navel and knees.”
This social silence seems reasonable at first blush. Toileting is both private and gross, and we don’t usually want to know or think about the toilet habits of others. Everyone poops, but it’s a secret.
But this silence causes two serious problems for people with IBS or other bowel disorders, like me. The first is that we don’t know what’s normal, so it can take us years to learn we are sick. In retrospect, I realize I must have had IBS for a whole decade before bleeding ulcers took me to the emergency room, where I got a referral to a gastrointestinal specialist.
Since many bowel disorders are progressive, meaning they get worse and cause more damage over time, delayed treatment means further, irreparable harm has been done. Remission is the goal of knowledgeable patients, but if you don’t even know something is wrong, you can’t begin to address it. Shame and secrecy keep people sicker longer.
Once we do know we’re sick, the second consequence of silence comes up. That would be stigma. Wearing adult diapers and having a toilet accident are about equally mocked and scorned in US culture, leaving people with poor bowel control or incontinence feeling excluded from everything, possibly unwilling to leave their home for fear of public indignity.
The stigma surrounding bowel disorders and toileting disabilities has been described as “loss of dignity” by disabled death advocates and some of the people they’ve lawfully killed. People are literally ending their lives because they’re ashamed to be incontinent. Shame doesn’t really get more devastating than that.
I’m fortunate to have several friends with similar conditions, and we’ve formed a private support group where no one complains “ew gross TMI” as we describe symptoms making us miserable. Because we can be more intimate with details, we can better track our own and each other’s health. We notice if someone’s had diarrhea for weeks or been nauseated for months.
If you have a bowel disorder, I strongly encourage you to find someone you can talk to frankly about what you experience. That may be a support group, or a therapist, or even just a private health log written in code for your own reference. Disability guilt, depression, and shame are all more likely to plague you if your health is some dark terrible secret, and it’s hard to monitor and improve your health if you’re too embarrassed to remember it. The world isn’t ready for casual public discussion of loose stools and painful gas. But you may need to be ready yourself.