the scapegoat dev

My life with IBS

an AI generated image of a black tower in a black night, with white vultures flying around it

Content Warning: IBS, chronic illness, suicide, mental health

Around 20 years ago I caught a virus and since then my gut has somehow become disconnected from my brain. I feel permanent discomfort (or, as I have recently learned, actual pain). It will wake me up at night when it's bad. A lot of the food I used to like (vegetables, tofu, garlic, onions, …) make things exponentially worse. It took about 3 months for suicide to become a real possibility (tbf I wasn't starting from zero here). It is a constant companion.

In the first year, I went to dozens of doctors and had exams and scans done and samples taken and whatever. Everything came back normal. I skipped suicide by cleverly tricking myself, but the constant pain threw life completely off the rails. I was obsessed with finding a solution, trying all kinds of diets, and it being about digestion and the gut, everybody had something to say about the matter, since everybody deals with it at times.

It took me two more years of saying "fuck it, this is the way it is now, let's move on", which actually worked. Hope is one of the most cruel emotions, and I was glad I could banish it so easily. That's what I think the IBS label is for: allow closure and give hope a decent ending. My life was still a mess due to a host of other reasons. Through all of it, psychotic mania, substance abuse, moving to another continent, good times and bad times, one thing stayed constant: the IBS.

Over time, I started to identify more and more trigger foods so that I could finally reach some kind of relaxing baseline. I can subsist on bread and meat and sweets. I can venture out to eat other food, knowing that I'll be able to return to an almost relaxing state within a few days.

The one thing that reliably allows me to forget about my gut is doing something that captures my full attention, especially if there is a physical component to it. These things are: playing an instrument, making music with my synthesizers, programming, riding my bike, playing video games. So that's what I try to do, from morning to evening.

People often tell me: do you ever stop? I don't, because "not stopping" is what allows me to stop. Sure, I want to feel productive, and I stress about it as much as the next person. But constantly trying to lose myself in something? It is about finding peace and quiet amidst the pain.

I have been reading a lot of accounts of disabled people lately and these are stories not heard. I haven't found much personal experiences around IBS, it is invisible, in fact living with it is trying to make it invisible to yourself. Talking about it invites so much well-meant advice, when the last thing you want is advice (some of it might even be the solution! hope!) because that way lies despair.

So there you go.