I’m at the end of my rope with the UC. I feel like I can’t take it anymore, but I don’t have a choice.
I put on an act most of the time: being brave, dealing okay with a sucky situation. I make a lot of poop jokes. And sometimes it is real. Sometimes I am brave and resilient.
But sometimes I’m not.
Partly I put on the act for other people, but mostly it’s myself I’m trying to convince. I want to be strong and brave and resilient. I want to be well enough adjusted to it that I can make jokes about it. Sometimes I do believe that about myself.
And sometimes I come home and sit on the toilet and cry. I feel like I’m losing my life to UC. Oh, sure, I’m still alive…but without the quality of life I need to be okay.
A lot of the time, I can’t socialize or exercise or grocery shop or leave the apartment or eat because the symptoms are too acute. Between the chronic dehydration, malnourishment, and side effects of the immunosuppressants, I have no energy. I’m in constant pain. I’m bleeding, although in relatively small amounts. I don’t sleep well because i have to get up and run to the bathroom, sometimes 10+ times per night. I take 12 pills a day for the UC, and I’m probably about to start giving myself shots. I practically live in doctors’ waiting rooms and exam rooms.
I could deal with the appointments and the meds and the diet if it got my symptoms under control, but that hasn’t happened so far. It’s better than it was at the start, but it’s still taking over my whole life. I’m bordering on suicidal.
It triggers a lot of trauma stuff. Some of the symptoms, especially bleeding and rectal pain, are triggering, as are the medical exams. And there’s the overarching trigger theme: I have no control over what’s happening to my body. I hate it all so much.
And I feel like I shouldn’t talk about it—be brave and shut up. But maybe talking about it is another way of being brave.