On inappropriate envy

[alias_sqbr]

Two things you should not say to someone whose life is significantly affected by a medical condition:
1) Wow, I wish I could life your life!
2) If I had to live like that I would die

I've had quite a bit of the latter when I tell people I can't eat much chocolate etc, it get a bit frustrating. I don't mean "That must be annoying", I'm talking a reaction of intense pity and shock. (It's not that bad!)

But now I have chronic fatigue I get a lot more of the former. To anyone who wants to spend all day laying around doing nothing? Do it! What's that, you can't afford it? You'd feel guilty? People might give you crap? That doesn't stop me, don't let it stop you!

Still, thinking about this reminded me to look up dot_gimp_snark. Also Lauredlh has a good post about chronic fatigue and invisible disabilities here.

Tactless oaf that I am, I have almost certainly said both of these things multiple times to different people, especially since most of the time it's just people reacting in "Oh god I don't know what to say" panic, which is a common state for me. So, you know, if you've done it to me I probably just accepted it as karma :)

Comments

[infamyanonymous.livejournal.com]

While I'm sad that you actually have CFS, I'm secretly kind of happy to know someone who gets what I've been going through for the last few years. I know CFS =/= narcolepsy, but the whole just... you can't do what you need to because some part of your brain/body wants you to sleep.
The sheer amount of your life that is taken away from you.

I get a lot of the a), "wow, I wish I could get to sleep like that" or "I wish I could nap like you". No, you don't! I um, technically, need to go see the driving people and have my license edited so I can't drive if I haven't had my meds.
And while I'm verging on a rant, there's two things that piss me off when people find out-
i) They think they know what it's like because they've pulled allnighters.
ii) "Just snap out of it, you're just being lazy"

Okay, the rant sort of dwindled by dot pointing it. Point (i) kind of turns into (ii). People kind of understand what CFS is but too often mistake it for CBF, but narcolepsy, what is that?
These kind of disorders are like mental disorders, the general public doesn't quite get them, and they're not real, just get over it. As Megz said, she'd like an excuse to sit around without judgment. But it's not without judgment.

Standing at the register the other day, I'd forgotten my pill and I felt like I was going to collapse. It starts with tunnel vision, then lack of coordination, weak pulse, and then feeling like you haven't slept in a week. Parts of your brain are actually asleep. Sitting down, you'll fall asleep. Standing, well, it's fucking scary, tbqh. Asking to be excused is embarrassing, and the answer is likely to be "what, because you're tired?"

Oh and the good ol', "You're just a fat, lazy sod who's using this as an excuse." Most frequently heard from my mother :P

I do hear a lot of the "I'd die" one, with reference to MSG, but not nearly as much as you hear. I can't eat a lot of fats either, so most fast food is yucky. I kind of get your eating problems, but without having to stay away from chocolate. (At least you still get a bit of dark chocolate, which is infinitely better anyway ;) )

[alias_sqbr]

Well, it's been eight or so years of undiagnosed chronic fatigue, which doesn't get much sympathy, especially from my Phd supervisor. Not that I'm still bitter :/

But yes, people think they understand what it's like and have no idea. Sometimes feeling bad because you did something extreme /= constantly feeling like complete crap after doing the simplest tasks. (And I'm sure I have no idea what narcolepsy is really like, but assume it doesn't mean having a nice refreshing nap every now and then)

I and Cam had some...misunderstandings on the subject, shall we say, which are largely cleared up now. But that stuff with your mum sounds horrible. I do wonder how sympathetic mine would be if I was still at home, she certainly didn't pay any attention to my food/chemical intolerances. Invisible illnesses suck.

Though on dot_gimp_snark there was someone who got similar crap from their mum for being blind, so I guess being sick sucks in general.

It is definitely good to find people who understand what it's like, I've found cfsids_me quite helpful, and just joined dot_gimp_snark (the title says "disabled" but it's for anyone with a chronic illness) and it turns out quite a few people I know have or had cfs/fibro. Have you thought about joining a narcolepsy comm?