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

[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.

[alias_sqbr]

You're making a stand against consumerism by refusing to subject yourself to the meaningless grind of the capitalist cycle of greed! :)

I mean I think some of these people might be happier if they did lie around more and worked less, and there's no shame in making that choice. It's still not the same as being forced into that lifestyle by circumstances beyond your control.

[mothwentbad.livejournal.com]

Well, nihilism wasn't exactly a choice. There aren't any other viable options of which I am aware, or else I'd probably take them immediately.

[alias_sqbr]

Ah, so you're stuck there by your brain while I'm stuck here by my body. Well, I'm not going to claim mine is worse, but it's still different :)

[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.

[alias_sqbr]

Well, I don't mind people saying that if it clearly is hyperbole. I like a bit of absurdity and poetic license :) But yes, that's not the same thing as overdramatising and believing your life will actually end if things don't go 100% the way you want.

Be careful with hyperbole.

[infamyanonymous.livejournal.com]

Yay, I get to tell my embarassing story!

Me: "What with stress and the flu, my friends could be dead for all I know!"
Lady: "A friend of mine died on Monday. He was at work and had a heart attack. Weakened by influenza."


And now I feel bad again.

Re: Be careful with hyperbole.

[alias_sqbr]

Ow. I hate situations like that, and being remarkably tactless I hit them a lot...

[shehasathree]

word!

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

[alias_sqbr]

Ahaha, oh wow, that's pretty bad. You should tell them there's lots of other conditions which cause weight loss: maybe they should consider dysentery, or some sort of substance abuse.

[shehasathree]

LOL!

if i recall correctly, i was too stunned at the time to say anything much (plus it was my then-boyfriend's mother who made the comment. but, yeah. bad. i was and looked) pretty sick at the time.

[alias_sqbr]

Ah, yes, boyfriend's mothers. I know them well :/

[auntpol.livejournal.com]

HAH. (They obviously haven't heard about pred though.) But that is pretty terrible.

[firvulag.livejournal.com]

oh indeed. however on the down side for me at the moment, I wish I could lose weight like, um, me...

I've had a lot of my bowel removed and somehow have found myself gain 5kg suddenly in completely the wrong location and it has caused issues. Now I just want it gone and it doesn't want to shift. yet.

I've been anoyed with people comments like 'i'd die if...' when they relate to illness too, and being 'mostly' and invisible illness, if I wasn't vocal about it (I'm pretty sure that over 90% of the people that know me, know I have crohn's, and know I have a bag, and probably know more than they'd like to know about both) most wouldn't know i had any illness and just think I'm very slack. (doesn't help that I am also slack and lazy, but not the point...)

[alias_sqbr]

doesn't help that I am also slack and lazy, but not the point...

Exactly! :)

[i-palimpsest.livejournal.com]

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

[alias_sqbr]

Well, you might have sort of rare cocoa deficiency or something :)

[i-palimpsest.livejournal.com]

You'd be better off with a cocoa supplement wouldn't you? Or possibly intravenously?

[alias_sqbr]

It's always better to try to get nutrients through your diet rather than taking supplements, and in this case it would also be the tastier option :)

[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?

[alias_sqbr]

It definitely affects my mental state. If it was just physical, I'd be able to work (at least a bit). But I have real trouble concentrating, and am disproportionately worse at abstract mathsy/logical stuff (ie, my job) There's a general mental fuzziness, rather like I feel at 4am with insomnia: not always unable to do stuff, but not thinking 100% clearly, and prone to errors of judgement. Also I get eyestrain and headache, which doesn't help.

I find my mental and physical energies are like two different gauges, and they go up and down fairly independently as long as I don't go into the danger zone. Once I push myself too hard, I feel worse on both fronts, though it affects me more on the one I overtaxed. So yes, if I force myself to think too much I lose physical energy as well in the resulting relapse.

And has the experience of CFS in any way changed your intellectual processes?
Unfortunately, answering this question requires concentration :/ Um...I dunno. I guess I've gotten better at letting my subconscious do more of the work, giving it things to ponder and get back to me on (often in an unexpected long lj rant :)) Since I think slower and have worse judgement, I tend to decide what I think on things in advance and stick to that rather than making decisions/reacting on the fly. I worry that this makes my real life conversations a bit repetitive and out of sync with the person I'm talking to (I can think about online stuff at my own pace)

And now I am out of brains for this reply, so shall stop :) *goes to passively surf the internet to build up mental energy*

[dabear.livejournal.com]

I found my short term memory was the worst. Like, from minute to minute, and when you're used to being able to use your brain for like, stuff... like knowing why you just went to the effort of walking down the stairs... it's kind of crazy-making.

[alias_sqbr]

Did I mention I forgot my sisters 21st birthday? :(

And yes, when walking to another room is a major effort, it's pretty annoying not to be able to remember why you did it.

[terrycat.livejournal.com]

I find that mental activity wears me down more, and that I don't bounce back as quickly from it. Which is why I have the reputation of being a bit of a grunt; I can handle doing serious physical stuff as long as I budget for it, but doing any intense mental effort leaves me drained for weeks.

[http://users.livejournal.com/peasant_/]

I'm lucky because my brain gives me a physical early warning sign (I start to stutter) so I know when I need to slow down and conserve mental energy. Before I was diagnosed I used to sometimes get to the point where my brain was so tired I would hallucinate. Not pleasant.

[alias_sqbr]

Ew. Worst I had was the annoyingly frequent situation of being not only too sick to work but too sick to leave work, so I'd have to have a nap to get up the energy to go home.

I've started wearing slightly uncomfortable shows, that way my feet start hurting if I walk/stand too much :)

(Also it's funny the random things you can have in common with people, isn't it?)

[http://users.livejournal.com/peasant_/]

I've started wearing slightly uncomfortable shows, that way my feet start hurting if I walk/stand too much :)

Oh that is hysterical and a brilliant idea!

Ultimately I have found that the only way to cope is routine. I have a routine and when I stick to it I stay reasonably well and can cope with the life I have. I still have to deal with my frustration about the stuff I can't do of course, but that too gets easier with practice.

I guess that is what I most wish someone had told me when I first got ill - so I'll tell you in the hope it gives you some benefit :) It does get easier. Even if you don't get better in noticeable increments (I am lucky, I have improved, but the timescale is years not months or weeks) simply learning how to cope becomes easier and that makes life as a whole easier.


not only too sick to work but too sick to leave work, so I'd have to have a nap to get up the energy to go home.

Oh yes. And the persistent problem of when one is feeling absolutely vile and can barely think, let alone move, and people will keep coming up and asking if they can help. Grrr. I have to train everyone that if they see me going off by myself to sit down with my eyes shut then I don't need help, I need to be left alone to get the rest my body is crying out for. The crying being quite literal on occasions because I can get very weepy when I am badly crashing.

Also it's funny the random things you can have in common with people, isn't it?
Yeh, it's weird. I must say I was blinking with surprise when I read your post. Although sadly this thing is reasonably common - whenever I tell someone I've got it I am never the only person they know. And of course there is a higher percentage of disabled/chronically ill folk on LJ because we have more time to waste spend online than healthy peeps :)

[alias_sqbr]

Thankyou and yes, it's gotten easier even over the last month or so I've been at my current level of illness.

And of course there is a higher percentage of disabled/chronically ill folk on LJ because we have more time to waste spend online than healthy peeps

We're not wasting time we're forming support networks :D

[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.)

[auntpol.livejournal.com]

Remember the good old days of double choc chill? I miss that stuff!

((and yeah, there's a really big difference between contentedly lazy and doing nothing, and I'm exhausted and doing nothing. I can't believe people would even say that to someone with CFS, it's pretty...insane))

[firvulag.livejournal.com]

Just try and find me being 'civil' during the first month of any attempt at 'no caffiene' or 'no coca-cola'. I'm not good company at all. after that month, I'm generally ok though. and then for some reason I end up back on it when I really should know better. I enjoy it too much though and it isn't 'that' bad for me anyway... :)

I would imagine CFS is similar to the effect of crohn's was up to and for a while after diagnosis. And anytime they took me off the steroids and other drugs. You have next to no energy. If you do something, mental or physical, you need to get that energy back and the only way to do that is rest/sleep.

I'm not game to let a doctor try to diagnose me with CFS, I don't want to know. I'll just pretend it's just work making me feel tired. It's better for me that way. (I have -1.5 sick days, and -1 annual leave currently, and I'm trying my hardest to fix that. already used 0.5 of the 1.8 I get back this month and it only started on thursday...)

[alias_sqbr]

Hmm. See my reply to evil_megz above: if it is cfs you really don't want to push it or you could make yourself worse.

But yeah, I gave up on staying within my sick days a looong time ago :)

[terrycat.livejournal.com]

You have next to no energy. If you do something, mental or physical, you need to get that energy back and the only way to do that is rest/sleep.
Except that if you sleep too much, you lose energy.
If this was a game, no-one would want to play it.

[alias_sqbr]

Except that if you sleep too much, you lose energy.

Ah, see, I get insomnia the next day.

Which leads to a lack of energy, so I guess it's all the same thing :/

[alias_sqbr]

Actually I was pretty addicted to it in my youth, but then again I didn't have to quit cold turkey, I just became more and more aware of the negative physical effects (which unfortunately take longer to kick in than the positive ones, allowing me to be in denial about them) and slowly cut it out.

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.

Got it in one. And most of the time I am literally physically incapable of moving, so it's not so much an excuse as an explanation.

(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.)

I Am Not A (medical) Doctor, but having been in that boat, if it is CFS you want to be careful, since the reason I'm in this mess is because I pushed myself too hard when I was just tired all the time but able to work etc if I pushed myself. Keep an eye on yourself, and if you're interested the overview here is pretty good (just scroll past the first few pages)

[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 :-(

[alias_sqbr]

How dare you vent about your health on my venting-about-health post! :) Which itself was inspired by feeling particularly achey, so I understand. Stupid uncooperative bodies.

[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. :/

[alias_sqbr]

Oh yes, I totally understand (and do not begrudge) envy of having a diagnosis, I've been in that boat myself. I mean, part of me is almost glad I got so bad the doctor had to give in and admit I had chronic fatigue, since it's been eight years of "Maybe you just need to eat more vegetables", "You've just had a series of identical virii", "Have you considered antidepressants?" etc. Bah.

[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?