That's a pretty combative headline, I know. I should back up. I've been acutely, seriously ill all summer. You know this from previous posts. It's not clearing up by itself, and I'm going to have the first of two surgeries to fix it in October. It's going to be invasive. I'm going to be incapacitated. I'm going to have a temporary ileostomy for a few months. Then I'll have another surgery. I'll be hospitalized for a few days on either end. In the meantime, I still have this damn tube in my hip.
People have been sweet, and wonderful, and supportive, and concerned, and caring. But I still get (well-meaning) comments like "well, just take it one day at a time!" or "Your life could be worse!" or my absolute favorite, "you're so good-natured about it all! You're such an inspiration!"
No I'm not. I'm not here to inspire you and I'm not cheerful about this. I'm fucking pissed.
Do people seriously not see that? I must be a better actress than I thought. I'm not being good-natured about it, I'm being polite, because it's generally not good manners to fly into an uncontrollable rage in public. It's especially not good manners to take your terror and pain and frustration out on someone who has no clue that they have no clue. I haven't accepted shit; I'm angry at the universe and frustrated and tired and in pain all the time and terrified out of my mind that I'm always going to be like this and holy shit okay crying now.
I'm only 30 years old, and I'm facing the possibility of medical equipment hanging off me for the rest of my natural life. What part of that leaves someone cheerful? I mean, unless you've got some fetish thing, in which case I ain't judgin'. I've got so much of my life that I haven't yet lived. And I just can't fathom anyone wanting to stay married to someone like that.
I don't know. I had more to say, and now I'm just overwhelmed with sadness and I can't think.
I guess I would say, if you meet someone with a chronic illness, don't tell them it could be worse. That completely negates the real suffering they experience. Don't tell them they're taking it so well. That means they can't be themselves, and they can't acknowledge the days they're feeling bad (which is going to be most of them, okay?). And for the love of all that is holy, don't tell them "but you look SO GOOD!". That will get you a slap across the face. Because well, if I look good, then everything must be okay, right? I must not really be that sick. It couldn't possibly mean that I'm just good at masking.
Here's what to say:
"I don't know what to say, but I'm thinking about you."
"Wow, that really does suck."
Or, you know, you could talk to your friend about fashion, the weather, the NFL, or whatever else you want. We're more than our disease.
SO, don't tell me I'm your inspiration. That means you have no clue about reality - that I whine to my husband and mother almost constantly, that I'm worn out by sweeping the house, that I smell like plastic tubing and old blood, that I'm 15 pounds overweight because I can't exercise at all, that I'm wishing I could run away or sometimes borderline suicidal because I'm wrapped up in worst case scenarios. That I cry and throw tantrums when I drop something for the 15th time that day. That I'm much, much weaker than I seem.
I think my mom said it best, when she attended the decisive doctor's appointment with me. She reached over and patted my arm, and chuckled sadly. "Life's a real piece of shit sometimes, isn't it?"