You are not crazy, and it is not in your head.
Unexplained abdominal pain is isolating, precisely because no one seems able to place it. The numbers do not capture that. Stories do. Below is one, split into four sides, plus room for yours.
From one experience, four sides
These fragments come from one experience, shared anonymously. Not to put one person centre stage, but because ACNES chafes in more places than just the belly.
"I was the only one trying to keep track of the whole picture. With every doctor I started over."
"I have been to so many places where they did not even know what ACNES was. You explain your own story over and over, and you notice you are the only one keeping the overview."
"I used to be a handyman with a high pain threshold who did not shy away from anything. Now I often end up passive on the sofa, purely to protect myself from the pain."
"I used to be able to take a lot. Now stubbing my toe feels like I could call an ambulance. As if my pain threshold has been reversed."
"I am not sharing this for sympathy, but because I know how lonely it is when no one can place your pain. You are not crazy, and it is not in your head."
Share your experience
Did you also spend years with unexplained abdominal pain? Was it recognised late, or still not? Your story helps make the pattern visible, and shows the next person that they are not crazy.
🏎 Need help right now?
Long-lasting pain and feeling alone with it takes its toll. Feeling low or having thoughts of suicide? In the Netherlands you can call or chat day and night with 113 Suicide Prevention via 0800-0113. Outside the Netherlands, contact your local emergency line. In case of immediate danger: call 112.