“I am not my chronic illness”

Project Description:

I’m not insecure about being an ill person. I’m not even insecure about telling people as much as they’d care to know about the symptoms. The Diarrhea, the urgent need to use the bathroom umpteen times a day, the bleeding, the pain, and the exhaustion. It’s rough, but I’ve gotten more and more comfortable relating the details of my reality to anyone that could stomach listening. 



I’ve found the most insecurity in my confidence and ability to be a man of my word. Sometimes the disease has mercy on me, and it sneaks off into remission, leaving me to feel that I can lead a somewhat normal life. But then, as has happened to me several times, it shows up uninvited, and throws my whole world for a loop. I am left powerless, and the disease holds all the cards.

How do I tell a boss that I’d be a good employee with a straight face? How to I make social plans? How do I book gigs, or travel plans? I’m constantly worried that any plan I make will be interrupted by my “buddy,” and I’ll have to back out. I hate that. I almost feel like I have to put an asterisk next to everything that denotes “If I’m feeling up to it.”

I am very lucky to have support from those close to me, but this disease takes a toll on them as well. They have to sit helpless and watch me suffer. They have to wonder if I’m going to be able to do the things I’ve told them I would. That brings guilt. My other half has gone to the greatest extremes. Not only has she been helpful in trying to figure out all the things I’ve had to give up eating, but she’s taken on the burden of the limited diet too. I can’t eat pizza, so she gave up pizza, saying it wasn’t that good for you anyway. I had to give up sushi, so she gave up the yummy sushi, too. I’m astounded by all that she does on a regular basis to try to make me feel better, or at least help me deal with feeling terrible, but it’s a great source of guilt for me, too. It seems unfair that she have to give up so much because I’m sick. I’ll never be able to repay her, but I don’t know how I’d manage without her.

In the end, I am most insecure when I picture the person I would be right now had I never gotten sick vs. the man I am now, riddled with ulcers in very inconvenient portions of my body. I am having trouble reconciling the notion of a life with this disease, and slowly acknowledging that whenever it wants, it gets to call the shots and take control, and there’s little I can do about it.
Other than try to cope and take it one day at a time.
Just like all of us.