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9:26pm May 5, 2013

cfconfessions:

“I hate when people tell me they hope I feel better soon. I know they mean well, but CF is a progressive disease. I literally feel worse every single day.”

-Anonymous

(Note: I don’t have CF. This is a reblog from someone who does, with comments about my own progressive conditions added.)

With regards to gastroparesis and other progressive conditions I have, I get stuff like that. My least favorite at the moment is “When are you going to get the feeding tube out?”

Of course, as far as anyone knows, the feeding tube is permanent. I won’t ever likely be able to eat again.

But other people simultaneously want to offer me false hope, and feel worse about it than I do when I say it’s meant to be permanent.

Sometimes they act like I need to think more positive than to believe a permanent, progressive condition is going to mean a permanent feeding tube.

Other times they pity me. The worst ones are the ones that want me to take care of them. They want me to make them feel better about me never eating again. Even though I’m the one who frigging won’t eat again. I don’t feel as bad for myself as they feel about me. But they feel like they have some right to be comforted by me for a condition I’ve mostly accepted by now, despite the risks and dangers I’m more aware of than they are.

And in general I can’t stand being around people whose fondest wish is to make me get better, who think that I can’t possibly have a life unless I reject reality and act like progressive conditions are likely in any way to reverse themselves. Look, I know all about this. I even know it may limit my lifespan by a lot, I just had a close call this past month even. But I can deal with it. And I’m the one with the conditions. So if I can deal with it, you frigging can too. WTF.