On inappropriate envy

[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

[mothwentbad.livejournal.com]

Yeah, I live kinda like that sometimes, and not for any particularly good reason. Well, maybe apathy, but I somehow doubt that there's an acknowledged designation for it.

[stephiepenguin.livejournal.com]

Relatedly, I find it very frustrating anytime people say "I might die" to things which probably aren't going to kill them, for example: "If you don't hear from me it's because exams killed me;" "I'd die if I couldn't eat icecream;" "I'd die if she broke up with me;" etc. I will grant that there may have been, or it may occur in the future, that someone dies from exams (due to stress or the building collapsing in the middle of the exam or something), but the likelihood of the person making that comment actually thinking they're going to die is so miniscule, why are they engaging in such hyperbole? argh, etc.

[shehasathree]

word!

also, things not to say to someone with Crohn's Disease:
"i wish i could lose weight like you!"
>:|

[i-palimpsest.livejournal.com]

If you'd die without chocolate. . . . you probably want to look into some therapy.

[flyingblogspot.livejournal.com]

This is at a bit of a tangent to the post, but do you mind if I ask a CFS-question (or three) Sophie? (Feel free to ignore if it's not something you feel like answering.)

I was just thinking about mostly-physical activities versus mostly-intellectual activities and wondering to what extent the CFS affects the latter in your experience. Do thinking activities contribute to the fatigue too? And has the experience of CFS in any way changed your intellectual processes?

[evil-megz.livejournal.com]

Personally, while I might not die without chocolate/chocolate flavoured milk, I would probably become psychotic and depressed. But I am abnormally addicted to the stuff, and I'd get used to eventually. And I wouldn't feel incredible pity for others who can't have it, since I'm aware that not everybody shares my addictions.

As for being jealous of CFS, I would like an "excuse" to lie around all day with nobody justifiably telling me I was just being lazy, but I imagine chronic fatigue wouldn't be quite the relaxing lying-around-all-day experience that people who are jealous of you must expect, but more of a you-feel-like-you've-just-worked-a-solid-week-but-have-nothing-to-show-for-it-argghh experience.

(And hey, I could have CFS anyway. Though I think it's actually narcolepsy. Or cats-fall-on-me-a-lot-while-I'm-sleeping fatigue.)

[stephbg.livejournal.com]

Sometimes "Did you go to work today?" gets on my nerves, even when I'm sure it's well-meaning shorthand for "Did you feel well enough to go to work today?"

I WANT to work you MORONS.

Ahem, sorry. Feeling particularly unwell lately :-(

[greteldragon.livejournal.com]

I can understand the envy from a point of view of, at least you know what the hells wrong, rather than the doctor telling you you're fine (not that I'm bitter :P). That's not what people are saying though is it?

But other than that. :/

[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 ;) )

[mothwentbad.livejournal.com]

Yeah, I live kinda like that sometimes, and not for any particularly good reason. Well, maybe apathy, but I somehow doubt that there's an acknowledged designation for it.

[stephiepenguin.livejournal.com]

Relatedly, I find it very frustrating anytime people say "I might die" to things which probably aren't going to kill them, for example: "If you don't hear from me it's because exams killed me;" "I'd die if I couldn't eat icecream;" "I'd die if she broke up with me;" etc. I will grant that there may have been, or it may occur in the future, that someone dies from exams (due to stress or the building collapsing in the middle of the exam or something), but the likelihood of the person making that comment actually thinking they're going to die is so miniscule, why are they engaging in such hyperbole? argh, etc.

[shehasathree]

word!

also, things not to say to someone with Crohn's Disease:
"i wish i could lose weight like you!"
>:|

[i-palimpsest.livejournal.com]

If you'd die without chocolate. . . . you probably want to look into some therapy.

[flyingblogspot.livejournal.com]

This is at a bit of a tangent to the post, but do you mind if I ask a CFS-question (or three) Sophie? (Feel free to ignore if it's not something you feel like answering.)

I was just thinking about mostly-physical activities versus mostly-intellectual activities and wondering to what extent the CFS affects the latter in your experience. Do thinking activities contribute to the fatigue too? And has the experience of CFS in any way changed your intellectual processes?

[evil-megz.livejournal.com]

Personally, while I might not die without chocolate/chocolate flavoured milk, I would probably become psychotic and depressed. But I am abnormally addicted to the stuff, and I'd get used to eventually. And I wouldn't feel incredible pity for others who can't have it, since I'm aware that not everybody shares my addictions.

As for being jealous of CFS, I would like an "excuse" to lie around all day with nobody justifiably telling me I was just being lazy, but I imagine chronic fatigue wouldn't be quite the relaxing lying-around-all-day experience that people who are jealous of you must expect, but more of a you-feel-like-you've-just-worked-a-solid-week-but-have-nothing-to-show-for-it-argghh experience.

(And hey, I could have CFS anyway. Though I think it's actually narcolepsy. Or cats-fall-on-me-a-lot-while-I'm-sleeping fatigue.)

[stephbg.livejournal.com]

Sometimes "Did you go to work today?" gets on my nerves, even when I'm sure it's well-meaning shorthand for "Did you feel well enough to go to work today?"

I WANT to work you MORONS.

Ahem, sorry. Feeling particularly unwell lately :-(

[greteldragon.livejournal.com]

I can understand the envy from a point of view of, at least you know what the hells wrong, rather than the doctor telling you you're fine (not that I'm bitter :P). That's not what people are saying though is it?

But other than that. :/

[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 ;) )