Should you talk about your IBD?
It's a question a lot of people with ulcerative colitis or Crohn's disease ask themselves in silence: do I talk about it, to whom, and how much? For years, my answer was simple: I told no one.
I've always been the type to keep medical problems to myself, waiting to see how things evolved before opening my mouth. The result was that I managed a chronic illness entirely on my own, as if it were a slightly shameful secret. And I wasn't even the only one: I found out late that my own sister had been living with the same disease for years. We just never talked about it. I'd naively assumed that if no one mentioned it, it couldn't be that serious.
The cost of silence
Saying nothing looks convenient. In reality, it's expensive.
You turn down outings without giving a reason, so people think you don't want to see them. You cancel last minute and come across as unreliable. You grit your teeth in a queue when accommodations exist for exactly that situation. And above all: you spend your energy reinventing solutions other people have already found.
Silence isolates, and isolation makes the illness heavier. It's as simple, and as dumb, as that.
Where I'm at today
I don't make grand announcements. I don't talk about my stools at the coffee machine. But I've stopped lying by omission.
To one or two close people, I explained the illness once, calmly, so I wouldn't have to justify myself every time. Before a meal or a long trip with someone, I give a heads-up in one sentence: "I might need to dash to the bathroom, it's medical, don't worry." That defuses everything. People care far less than my head used to imagine.
This website, like the book, is my way of following that logic through: dropping the "we don't talk about it" that kept me company for too long.
Looking back…
Talking about your illness isn't complaining, and it isn't making it your identity. It's simply refusing to carry alone something that's already heavy. You choose who, you choose the words, you choose how much detail. But total silence doesn't help you: it just adds loneliness on top of the disease.
Important: this is my personal experience, not medical advice. Every situation, every family and friend circle, and every form of IBD is different.
I tell this whole journey — from diagnosis to a life without medication — on my journey page, and in full in the book UC: Living Without Medication.