Shame, the symptom nobody talks about
When people list IBD symptoms — ulcerative colitis, Crohn's — they mention the stools, the blood, the fatigue, the pain. Almost never the shame. In my case, though, it's the one that did the most damage.
There was an episode, one day, in the street — I tell it in the book — where my body gave out before I reached a bathroom. Nobody saw a thing. And yet, inside, something broke. It wasn't the pain that finished me off that day. It was the humiliation.
The trap of pride
There's a card that gives priority access to bathrooms. A real fast pass, made for exactly this kind of situation. For years, I never used it.
Between cutting the queue by holding up a card, and doubling over in silence at the back of the line, I chose the second option for a long time. Out of pride. Wrongly, obviously.
That's the trap: shame pushes you to refuse accommodations, help, the simple words that would explain things — everything that would make your life easier. You'd rather suffer quietly than accept one second of embarrassment.
Where I'm at today
I use the card when I need it. I say the word "bathroom" without lowering my voice. Before a dinner or a long trip, I give the other person a heads-up, calmly, in one sentence.
None of that turned me into someone exposed or pitied. It just took away a weight I was carrying on top of the illness. And I noticed something: the discomfort I imagined in others was mostly in my own head. People care far less, or find it far more normal, than I ever gave them credit for.
Owning it isn't isolating yourself either. It isn't rejecting people who don't get it. It's just refusing to spend a crazy amount of energy hiding.
Looking back…
Shame is a symptom like any other, except it doesn't show up on a blood test. It can still be worked on though: by accepting the tools made for you, by using simple words, by noticing, little by little, that the world doesn't collapse when you own it. It isn't the illness that isolates. It's the silence we wrap around it.
Important: this is my personal experience, not medical advice. If shame, anxiety or isolation linked to the illness become heavy to carry, talking to a professional (a psychologist, a patient association) is never excessive.
The full story, including the episodes I don't go into here, is on my journey page and in the book UC: Living Without Medication.