I have no idea when my IBS symptoms began. Was it the daily projectile vomiting as an infant? The pediatrician said, “Don’t worry. It’s normal for her.” Was it insisting I visit every bathroom of every place I went during early childhood? Every. Single. Bathroom. Maybe that was just childhood curiosity. Was it cancelling plans with friends in secondary school so I could be near the toilet? Maybe that was due to 5+ years of antibiotics to fight acne. We just thought those things were normal. Normal for me.
“Normal for me” continued into my mid 30s, when I was plagued much more frequently with symptoms I could no longer consider acceptable. It’s not normal to be at a friend’s house for a couple hours and visit their bathroom seven times. It’s not normal to stop at three gas stations to use the facilities during a 30-minute car ride. It’s neither normal nor socially acceptable to soil yourself in public, and I won’t recount how many times I have. And normal people don’t have to fast to get through the day without a stomach problem.
There were more pressing issues to focus on, though, like a cancer diagnosis and pelvic floor damage that led to an ongoing struggle with bowel incontinence. After getting a sacral nerve stimulator implanted to help with that, I learned I might have IBS. It took a few years and batteries of uncomfortable, expensive, and humiliating tests before I got the diagnosis. Even now, each GI has a different opinion: IBS-D, CIC, IBS-M. And while I’ve tried various expensive medications and other treatments, not one GI has mentioned diet.
What I have learned is that it isn’t normal to be woken by pain, to have sweating, chills, and nausea, to have headaches and no energy, or to make repeated trips to the toilet (as many as 23) one day, and maybe zero trips the next couple days. If quality of life is impacted, it’s important enough to say, “This is not okay. I need help.” Help won’t come quickly or easily, and it may not work consistently, but we can listen to our bodies and decide what’s normal for us and what is not okay.