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A comment about judging people
So people with chronic fatigue syndrome are a minority in society. People with vaguely similar chronic illnesses and disabilities are less of a minority, I have no idea how much less.
But I still get very annoyed when people assume that anyone who does *blah thing to save energy* must be lazy. Yes, in the old days we didn't have labour saving devices etc. And in the old days, being chronically ill or disabled really sucked. (It still does, but not as much)
Pre-prepared food, remotes, scooters, whatever.
I mean I can understand saying "Surely not EVERYONE who uses this actually needs it, so the overall popular trend is bad even if some uses are valid" but you can't judge any given person without knowing their circumstances.
Even if they're overweight, especially since mobility issues tend, oddly enough, to lead to weight gain. Sometimes people's ill health is either unrelated to, or the cause of their weight issues, and we have just as much right to do unhealthy things like eating junk food as anyone else. Sick and disabled people do not fit into neat little boxes of "lovable perfect victim who never complains" and "entitled whiner who brought it on themselves".
Not aimed at anyone in particular, inspired by hearing about examples of overweight people with similar symptoms to mine (shortness of breath, low blood sugar meaning I need to eat often, slow ungainly gait etc) being judged for "making themselves sick by not losing weight", and thinking dark thoughts about my future since I can't see how I can not gain weight with my current level of immobility. Also this post, which has the added fibre of classism!
Oh, and that woman at the station who said to the man awkwardly carrying his crutch off the train before putting it back on "You obviously don't need that, haha"
Phew! I feel better now.
But I still get very annoyed when people assume that anyone who does *blah thing to save energy* must be lazy. Yes, in the old days we didn't have labour saving devices etc. And in the old days, being chronically ill or disabled really sucked. (It still does, but not as much)
Pre-prepared food, remotes, scooters, whatever.
I mean I can understand saying "Surely not EVERYONE who uses this actually needs it, so the overall popular trend is bad even if some uses are valid" but you can't judge any given person without knowing their circumstances.
Even if they're overweight, especially since mobility issues tend, oddly enough, to lead to weight gain. Sometimes people's ill health is either unrelated to, or the cause of their weight issues, and we have just as much right to do unhealthy things like eating junk food as anyone else. Sick and disabled people do not fit into neat little boxes of "lovable perfect victim who never complains" and "entitled whiner who brought it on themselves".
Not aimed at anyone in particular, inspired by hearing about examples of overweight people with similar symptoms to mine (shortness of breath, low blood sugar meaning I need to eat often, slow ungainly gait etc) being judged for "making themselves sick by not losing weight", and thinking dark thoughts about my future since I can't see how I can not gain weight with my current level of immobility. Also this post, which has the added fibre of classism!
Oh, and that woman at the station who said to the man awkwardly carrying his crutch off the train before putting it back on "You obviously don't need that, haha"
Phew! I feel better now.
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Firstly, I'm coming at this from an able perspective (my chronic issues are merely brain and gluten related!) and also as someone who has had this conversation with a surprisingly large number of able friends:
Them: "I feel so lethargic all the time, but all of my tests came back fine."
Me: "Okay, I know you eat pretty healthy food, but what activities do you do regularly that raise your heart rate above normal?"
Then: "Umm...nothing. I don't really like doing stuff like that."
(I've also had a similar conversation with many people who've said that they'd like to drop a few kilos but have a ton of excuses as to why they can't possibly tweak their diet to eat a higher proportion of fruit/veg and a lower proportion of carbs. [At which gluten-free me snarks 'WTF it's not that hard'])
These conversations tend to leave me in a place of puzzled frustration; I struggle to feel empathy when people have the ability and information to address their complaints, but choose not to. I don't really know how to continue the conversation when they're saying 'I don't like how things are and I'm not going to change anything to fix it'.
So, I'm really curious, from your perspective and experience with chronic fatigue, how do you personally feel when you see people who are fundamentally able with no chronic health issues make the choice not to feel better? (And I'm not talking about random people on the street and making assumptions about ableness, but people whose situation you know well.)
Are you more empathetic than you were before you experienced chronic fatigue? Less? Do you worry that their choices bring more societal judgment upon less able people, or do you want to defend their right to choose not to be well? Does it bother you that they don't make the small changes needed to increase their well-being when it's so much easier for them to maintain it than it is for you to feel well? Do you feel angry, supportive, indifferent or something else?
OMG so many questions, sorry. :) I just realised that I've never had the chance to question someone about this who would give an honest and articulate answer!
Cramming in my 2c
I have been overweight my whole life (due to various reasons, about 50% psychological, 50% sheer laziness.) Society seems to say that fat = bad. Any reason or contributing factors are "excuses". Until you are thin
and bouncing around in a bikini on the beach, you are not human, you are an insensate blob upon whom it is perfectly okay to pass comment.It's really an ingrained mentality in our society. Many of my friends and family have betrayed their feelings, implying that it is all just an excuse. Some have actually paraphrased this.
And as for my opinion on people who can't be bothered, I don't care. I'd prefer not to pass judgement on how they treat their bodies. A dietary or lifestyle change is voluntary; there may just be much greater motivation for different people (e.g. avoiding death from anaphylaxis.) In theory I could lose weight, I just have enough to cope with at the moment and would rather work on internal improvement.
Anyone who should change their diet/lifestyle gets lumped into leper box, and I can't deny anyone the privilege of being lazy.
Re: Cramming in my 2c
If you'll bear with me asking one more... *grin*
I've got some friends who do advocacy work to promote self-esteem and positive body image for women larger than the bizarre ideal presented by the media, and I think what they do is brilliant and healthy. And I've got a bunch more who might not have the time or interest to devote to advocacy, but they love and accept themselves and know that they are perfectly good and well as they, and in doing that make their corner of the world a better and more loving place. (And likewise for friends with other issues that seem to attract social judgment - I don't want to derail this into a discussion on the relationship between fat, beauty & image.)
And in contrast, I consider the people I mentioned in my original comment who put an impressive amount of effort into complaining about how they don't feel well but very little effort into actually doing anything to feel better.
The first group, I admire; the second...I don't know what to do with them. They leave me flailing and confused. So (after than rambling explanatory lead-in) does your general indifference extend to people who are vocally dissatisfied with themselves / their resolvable-unwellness but not willing to do anything about it?
(Edited to say that I have no idea why I felt the need to put an excessive amount of personal anecdotes into these questions. I blame my Tax Law assignment for breaking my brain, and am sure that y'all would have got what I was asking perfectly well if I'd just said 'how do you feel about people who really are lazy, Sophie?' in the first place.) :)
Re: Cramming in my 2c
If they're whining, they're whining. When someone like that starts whinging about weight/energy levels around me, I have been known to respond with comments like "aw, diddums."
Just like I wouldn't whinge about not being able to afford new rims for my new model Jaguar* to someone who can't afford shoes.
(PS I hate Biggest Loser. It promotes the idea that fat people just need to be yelled at and starved until they become 'winners'.)
*I wish.
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We've touched on this subject before, but it's reasonably clear from your writing that you affirm the idea of targeting improvements in one's personal happiness ("my happiness project" etc. -- which it has been interesting to watch evolve over time). But if life isn't about pursuing happiness then merely being unhappy is not a sufficient reason to act.
There's a lot more I'd like to say about life analysis: for example about the granularity at which one observes the broad factors affecting life. But it's a bit late for me to do more than ramble, so I'll leave that for now.This view fits very neatly into that old (and dodgy) chestnut about men wanting to solve women's problems and women wanting to get a bit of sympathy: except you're not a man. But it makes me wonder about the type of status relationship you have with the aforementioned disdained non-problem-solvers.
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Definitely the combination, possibly just because it's so damn irrational!
(If I don't generally have to hear about someone's lack of willingness to change, the situation raises no more than a fleeting thought of 'well that's a bit inconsiderate when everyone's tax pays for your Medicare, but I guess it's your life', which incidentally is the same reaction I have when I see someone riding without a bike helmet.)
*cough*. This IS the internet...
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Ha! Well, you're good enough at posing as not-man anyway.
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The thing is, I spent eight years being told and believing (my doctors, friends, family, supervisors, etc) that I was lazy because I was "tired all the time and tests came back fine". Any time I tried exercising more I felt terrible because exercise exacerbates chronic fatigue. Any time I tried eating less (I eat a *lot*) I felt terrible for various reasons to do with my stomach and blood sugar etc. I upped my vegetable content just so doctors would stop bugging me about it and actually pay attention to me, and sure enough the main difference it made was being able to say "Why yes, I do eat lots of vegetables. So that's not the problem". I was told by doctors that it was very important for me to lose weight, so I pushed through and exercised even though I didn't feel like it and am now so sick I can barely move.
Also: My cfs doctor told me to try going off gluten and cut down on my carbs and I felt terrible. I really don't function well without large amounts of high fibre wheat/oats, even after several months I still never felt right and felt MUCH better after going back on gluten. Luckily his response was to say "Oh well, it was worth a shot, lets try something else".
A lot of my friends have had similar experiences, and I spend a fair amount of time talking to other people with cfs who have often also had years of everyone telling them they were "lazy", in many cases they still struggle with it. With cfs this can literally kill you.
So if someone says they feel tired all the time and can't fix it? I believe them. No skin off my nose.
I mean there have been changes I made under sufferance which genuinely helped. Eating more vegetables didn't help with my fatigue but did make everything a bit less fuzzy. Eating more fibre was very helpful with my indigestion. Cutting down on my refined sugars helped even me out. And I had heard those suggestions for years before and it took me ages to get around to trying them, but life is short and busy and full of contradictory advice.
So I tell people what worked for me, and it's their choice whether or not to follow it. I feel no certainty it will work for them.
I mean I probably do give people more benefit of the doubt than they deserve, but I can't bring myself to care. It might be different if I was a medical doctor etc. I don't even get that fussed when people say "I think I might have chronic fatigue but I don't know.." since I was in that boat for ages, though I do tend to say "Well that could be very serious you should get some tests done and if it is cfs learn about it's treatment or you'll make yourself sicker", and if they were being hyperbolic that shuts them up :)
Thoughts unrelated to cfs
I still seriously miss being able to eat whatever I wanted and do whatever I wanted. I'm not going to begrudge those who have the option to do that and take it.
I don't even really mind people smoking, it's their lungs. Though if any of my close friends or family started I'd probably bug them slightly every now and then.
All that said, maybe it's just been too long since I met anyone really whiny, and I've forgotten what they're like.
EDIT: Wait, I've realised what it is. The question was framed wrong (for me).
I don't see people as lazy if they're miserable and won't fix it even thought they could. I see them as self destructive. And obviously watching someone be self destructive is unpleasant, but all you can do is offer them advice and hope they make the right choice for themselves.
EDIT 2: Oh! And Drama Queens. I've encountered some of them. With health issues I tend to take people at their word but in general some people do seem to blow negative life experiences into a shakespearean tragedy with themselves in the lead. So, they're annoying.
But I see "Not looking after yourself" and "complaining too much" as two orthogonal measures, and have more sympathy for people who complain all the time whose lives actually suck (even if they could fix it) than for ones whose don't.
(Can you tell I hadn't really thought about this before and am figuring out what I think as I go? :))
Re: Thoughts unrelated to cfs
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I mean, I've always been told that I should eat better/get more exercise, etc, and have sometimes even tried it, but there are factors that play against it:
1) Depression. I've been clinically depressed for a lot longer than I've been diagnosed, and a hell of a lot longer than I've been properly getting treatment. If someone feels terrible generally and can't really place why, I don't discount the possibility of psychological factors. (Although those can be a vicious circle, as well, which can only be broken by unpleasant, difficult intervention.)
2) Things like ADHD.
No, really, I mean it. The thing is, changing habits requires sustaining the deliberate changes until they become truly habitual. If you just don't have the attention span for that kind of sustained willpower/effort, for whatever reason (ADHD is just mine), it may not be possible to achieve. And people tend to like things to stay the way they are, overall.
3) Other Unknown Medical Factors.
In general, mind you, I have limited sympathy with whining about the same thing at length; I try not to do it myself, but I recognise that people with difficulties can't be expected to shut up about it in perpetuity, and if it's Oh So Hard for others to hear about someone's genuine suffering, then they should try experiencing it for a while, and also, shut the hell up.
That said, extended whining by the able-bodied does somewhat annoy me. It's like the Oppression Olympics thing, where if you are complaining about how it's just so hard because you feel vaguely run down but all your tests come back fine, I would like you to meet my friend with nasty CFS, and while you're talking to her, my severe-clinical-depression-having, chronic-pain-suffering self would like to kick you in the shins, because neither of us whines all that much (imo) and we have problems of our own.
That said, if I couldn't string two posts together without whining about My Issues I would consider you justified in hating me. (Note that "mentioning" and "discussing" are not the same thing as "whining about". I'm talking about if my every post contained OMG MY SHOULDER HURTS IT SUUUUUCKS kind of things, not, say, reflections on how things affect my life, which are a part of my personal discourse.)
I vary in my judgementalism. On the one hand, I am generally sympathetic to the disabled; on the other, I can be a big judgey of fat people. (That I am fat does not really affect this much, since I tend to be harder on myself for my weight issues than my close friends, at least, seem to think I should be.)
Right now I'm exhausted all the time, because my lifestyle is draining to me. Would I have more energy if I were thin? Probably. Can I afford to make losing weight a higher priority than my recovery from depression, or keeping on top of all the things I need to handle in my life? Not really. Do I think that "exercising more", given that exercise exacerbates my chronic pain, would be detrimental to my mental health? Probably, and I can't afford that.
So... thingy.
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This, this sums up a part of my reaction I was struggling to articulate really well:
I think it's a part of why I was asking for reactions too, since when I think that sort of thing, I'm conscious that I'm effectively getting defensive on the behalf of less able friends. And so, instead of speaking and reacting for other people, I was interested in hearing what they had to say themselves on the matter.
I'm gradually coming to the position that my awkwardness with this whole situation arises from a communication gap. I tend to take things literally, so when people express a dislike for the way things are and a desire for change, I take that at face value. However, I suspect that there's something else going on here, and that maybe by sustaining a situation that allows them to complain, people are sometimes trying to communicate a need for affection, care and concern.
Things would be less confusing if human were more like Vulcans! :D
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I don't really know anyone like that, but I don't think I have a strong opinion on individuals either way. Everyone who has health issues has them wrapped up in an awful lot of other things, and I wouldn't presume to try to pick them apart into cause and effect and judge accordingly.
I do know that having CFS means you have to put up with the judgements of other people all the time. Comments like 'oh we all get tired' and 'I wish I could go to bed for a week' grate like mad if you let them. So do the judgements about weight gain and exercise. Part of learning to cope with CFS is learning to understand and not mind about this sort of thing. So for example a couple of days ago I was coming up the stairs when two men were at the top. I had to pause half way up and again at the top. One of the men joked 'having trouble getting up the stairs?' From his point of view that was a reasonable joke - because they've seen me walking around the house perfectly normally and so would have assumed I am healthy. I had to quickly explain that I have CFS and yes it can sometimes be difficult. And of course they were both horribly embarrassed so I had to quickly make an exit (quick being a relative term on that occasion!). None of that annoyed me even slightly, it probably embarrassed them far more than it annoyed me - but knowing how to cope with these situations is part of having CFS.
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