Twenty Years of “But You Look Fine”
What living with IBS actually feels like — from school assemblies to fainting on a train platform.
Every test I’ve ever taken says I’m fine.
Gastroscopy: normal. Blood tests: normal. Allergy tests: normal. I’ve had so many blood tests that I half expected to become anemic from the blood draws alone. Every time, the results came back the same, and every time I left the clinic thinking, Then why do I feel like this?
It took me several hospitals before a gastroenterologist at a large hospital finally gave it a name: irritable bowel syndrome.
IBS won’t kill you. Doctors say that a lot, and it’s true. But I want to say the second half of that sentence out loud, because nobody else seems to:
It won’t kill you. It just makes everything hard.
It started at school
I’ve been prone to constipation for as long as I can remember. When I try to think of a time during my school years when my stomach was actually fine, I can’t come up with one.
The toilets at my public school were dark and dirty, and most of them were squat toilets. (I honestly could not.) Because I hated going, I avoided going, which made everything worse. But diarrhea doesn’t care what you think about the toilets.
In my first term of junior high, everything changed at once. Suddenly there were senior and junior students and rules about how to behave around them. Uniforms switched from summer to winter on a fixed date, no matter what the weather or my body was doing. My stomach responded almost immediately. That first term, I had diarrhea nearly every single morning as soon as I arrived at school.
The worst part of the week was swimming class. My school was big on sports, so swimming happened whether it was blazing sunny or lightly raining, and the water was always cold. I was skinny, with nothing to protect my stomach from the cold, and we weren’t allowed out of the pool until we’d swum 25 meters. I’d finish with purple lips and go straight from the pool to the toilet.
The assemblies
If you asked me what the hardest part of school was, I wouldn’t say exams. I’d say assemblies.
Thirty minutes, sometimes fifty, sitting on the gym floor in the standard position: knees pulled up, arms wrapped around them. If you’ve never thought about it, that posture presses directly on your stomach. For someone with IBS, it might be the single most uncomfortable way to sit.
I fainted from anemia at assemblies. I doubled over with stomach pain at assemblies. It happened often enough that the school nurse arranged for me to sit on a chair at the very back. My homeroom teacher never really understood, so the nurse was the one who spoke up for me.
(The strange part: I was frail and fainted all the time, but I also had the fastest long-distance running time in my grade. I still don’t know what to make of that.)
Looking back, there were small things that could have helped: bringing my sports jacket to use as a blanket over my knees, folding a big towel under me as a cushion, wearing a scarf and a heat pack around my stomach in winter. Nobody told me any of that back then.
The sentence I still remember
Of all my symptoms, the three that hurt me most as a teenager were gas, a loud stomach, and constipation.
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Once, someone told me that I made people uncomfortable.
I remember going into a school toilet afterward and crying. I was trying so hard. My body still wouldn’t listen to me. I already knew I didn’t belong in that room. I didn’t need to be told.
After that, every 50-minute class was a countdown. Ten minutes left. Five minutes left. I spent most lessons trying to work out how to stop my body from making noise, and very little of them learning anything.
At the time, no one knew it was IBS. A doctor told me it was a stomach bug. It was years before I found out I had the gas-predominant type.
Growing up didn’t fix it
As an adult, the setting changed. The problem didn’t.
On my commute, I’d get off the train mid-journey to find a toilet. Not once in a while. Regularly. At one point, I’d used the toilet at every single station on my line. Eventually, I started planning my commute around which trains had toilets on board.
When it swung the other way, I’d go a week without a bowel movement. My stomach would swell so much that I couldn’t fit into a tight skirt. Gas moving around inside kept me awake at night, and the next day my whole body felt heavy. Sitting through a one-hour lecture was sometimes more than I could manage.
At work, there were days when I had an afternoon meeting and I knew I couldn’t go into it like that. So I’d spend my 30-minute lunch break in the office bathroom, using an enema to force things along, cold sweat running down my back, watching the clock, then going back to my desk like nothing had happened. More than once, the cleaning lady knocked to check if I was okay.
And once, on a bad morning, I couldn’t make it to a toilet in time, got off the train, and fainted on the platform. It was a vasovagal reaction. A station attendant came running with a wheelchair, and I ended up calling my boss from the station’s first-aid room to say I’d be late.
“Have you tried…?”
I once asked people on Instagram what the hardest part of IBS was for them. The most common answer was one I knew immediately: it limits everything.
Part of what makes it so exhausting is how hard it is to explain to people who’ve never had it. When you’re constipated, people say: “Just drink more water and eat more fiber.” When you have diarrhea, they say: “You probably ate something bad yesterday. Want a probiotic?” When it’s gas: “You’re overthinking it. It’s not that bad.”
Nobody means any harm. People are kind, and they want to help. But if it were that simple, it wouldn’t be this hard.
I couldn’t watch a long movie for years. I couldn’t say yes to plans without mapping out every bathroom first. Saying “I’d love to go to the movies on a rainy day” felt like a fantasy.
Why I’m writing this
I don’t have a neat ending for this story, because it hasn’t ended. I still have IBS. I still have bad days.
But I think a lot of people are living with this without a name for it. Some of them are teenagers sitting on a gym floor right now, counting down the minutes. Some of them are adults planning their commute around train toilets and telling no one.
I'm writing it down anyway. Partly for me, and partly because twenty years of saying "I'm fine" is long enough.
I still look fine. I'm just done pretending that means I am.
