sqbr: pretty purple pi (I like pi!)
Sean ([personal profile] sqbr) wrote2008-11-09 05:28 pm
Entry tags:

On inappropriate envy

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 [livejournal.com profile] 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 :)
alias_sqbr: the symbol pi on a pretty background (Default)

[personal profile] alias_sqbr 2008-11-09 10:38 pm (UTC)(link)
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 [livejournal.com profile] 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 [livejournal.com profile] cfsids_me quite helpful, and just joined [livejournal.com profile] 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?