this post was submitted on 07 Dec 2024

371 points (97.0% liked)

Chronic Illness

489 readers

199 users here now

A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.

This is a support group, not a place for people to spout their opinions on disability.

Rules

Be excellent to each other
Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.
No denialism or minimisation This applies challenges faced by chronically ill people.
No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.

Did your post/comment get removed? Before arguing with moderators consider that the goal of this community is to provide a safe space for people suffering from chronic illness. Moderation may be heavy handed at times. If you don’t like that, find or create another community that prioritises something else.

founded 11 months ago

MODERATORS

mecfs@lemmy.world

graphito@sopuli.xyz

FundMECFSResearch@lemmy.blahaj.zone

ShareMySims@sh.itjust.works

ShareMySims@lemmy.dbzer0.com

371

She's right (lemmy.blahaj.zone)

submitted 6 months ago by FundMECFSResearch@lemmy.blahaj.zone to c/chronicillness@lemmy.world

37 comments fedilink hide all child comments

all 40 comments

sorted by: hot top controversial new old

[–] SharkEatingBreakfast@sopuli.xyz 37 points 6 months ago (1 children)

Why the fuck people coming in here and being like "why spoons?? Just say 'energy'???" or whatever.

I'll tell you why: because when we say "energy", people start giving unsolicited advice on how to get more energy: take vitamins, eat healthy foods, go for a walk! Which.... you know, most of us do those things. And some of us can't do some of those things like the typical population.

Spoons run out. I'm out of spoons. I can't make more spoons. It will take time for the number of spoons to replenish to the point where I am able to hand out more. Until then: I am out of spoons. I can't give you a spoon.

[–] dragonfucker@lemmy.nz 6 points 6 months ago (1 children)

Drag calls them spell slots

"Can't come to the party today, drag's out of spell slots. No, drag can't just take a short rest, drag's a wizard. No, drag won't sell drag's soul to Asmodeus."

[–] horse_battery_staple@lemmy.world 4 points 6 months ago

Good for drag. Life is a marathon not a race.

[–] Empricorn@feddit.nl 36 points 6 months ago (3 children)

"spoons"? This might be a term I'm not familiar with...

[–] princessnorah@lemmy.blahaj.zone 43 points 6 months ago* (last edited 6 months ago) (2 children)

You've already gotten some other good answers, but here's the original post by Christine Miserandino who coined the term: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

[–] rockSlayer@lemmy.world 20 points 6 months ago

I'm very familiar with the concept but I had never seen the origin of spoon theory. Holy shit is that powerful

[–] dance_ninja@lemmy.world 4 points 6 months ago

Thank you for sharing.

[–] FundMECFSResearch@lemmy.blahaj.zone 28 points 6 months ago* (last edited 6 months ago) (1 children)

It’s a way chronically ill people talk about energy.

Our bodies tend not to be as resilient as healthy people. So if we do too much (ie. use too many spoons), instead of recovering after a day or two like healthy people would if they did too much, we tend to have our health worsen for long periods.

So the analogy is you have a limited number of “spoons” (energy) each day, and you have to use it wisely.

Obviously, this doesn’t impact every disability and is mostly used by chronically ill people and people with energy limiting conditions.

[–] jol@discuss.tchncs.de 21 points 6 months ago (1 children)

While I love spoon theory I think it's a poor metaphor to use for general audiences as it requires a lot of context. I guess this tweet is not really targeted at everyone, but just a rant to their circle.

[–] princessnorah@lemmy.blahaj.zone 11 points 6 months ago (5 children)

What metaphor would you suggest instead? At least in my experience, the term is becoming understood more and more by the mainstream.

[–] cAUzapNEAGLb@lemmy.world 6 points 6 months ago (1 children)

Could've just said effort or energy and i would've understood the intent of this post, I am now clued into spoon theory now though

[–] princessnorah@lemmy.blahaj.zone 7 points 6 months ago (1 children)

Neither of those terms are quite interchangeable though. Everybody has low energy days, that's relatively normal. But the word spoons is a shorthand for explaining a precious, and much more finite resource, as a way to distinguish the experience for disabled people.

[–] slackassassin@sh.itjust.works 0 points 6 months ago (1 children)

But it's not a vital nor precious resource. It's just tangable and limited. I think that's the disconnect.

[–] princessnorah@lemmy.blahaj.zone 3 points 6 months ago (1 children)

But it's not a vital nor precious resource.

I'm sorry, are you trying to argue that spoons aren't a vital, nor precious, resource for disabled people? Because I disagree vehemently. Please go and read Christine Miserandino's original post:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

[–] slackassassin@sh.itjust.works 1 points 6 months ago (1 children)

I did, and the point was about general translation.

[–] princessnorah@lemmy.blahaj.zone 1 points 6 months ago* (last edited 6 months ago) (1 children)

You know what, nevermind, I'm done wasting my spoons arguing this point with people in this thread.

[–] sartalon@feddit.nl 4 points 6 months ago

I never heard of it before and while I did not immediately fully understand it, I did understand and empathize with its point. I guess what I am saying is this is an anecdotal story that supports your argument.

[–] DogWater@lemmy.world 3 points 6 months ago (1 children)

A bucket full of a liquid. That bucket has a faucet over top of it that fills it at x rate constantly. For disabled people it fills more slowly than normal abled people so pouring energy out is more costly timewise and must be calculated carefully.

[–] princessnorah@lemmy.blahaj.zone 2 points 6 months ago

While I do like this metaphor, I think it's not useful as a shorthand. Once you explain spoons to people in your life, and they understand, it's a useful tool to catch their attention and help them realise that energy isn't an abundant resource for you.

[–] jol@discuss.tchncs.de 2 points 6 months ago* (last edited 6 months ago) (2 children)

If the original tweet was for the general audience, just replace with "energy". That's it. The term is more understood in our bubble only. You are suffering from bias.

Jargon is usually used to make oneself feel "in", but it by design excludes everyone else from the conversation.

[–] flicker@lemmy.dbzer0.com 5 points 6 months ago (2 children)

I come from a mental health background and spoons is excellent for anyone. It needs explaining, sure, but neurodivergent people can use spoons to explain the cost of their executive dysfunction, people with depression can use spoons... hell, people free from illness can use this expression, too!

I get being bitter about jargon but it's an extremely versatile and easy-to-understand metaphor. I think the aim here should be to share it more, rather than try to label it as improper to include.

[–] jol@discuss.tchncs.de 2 points 6 months ago

Yes, if you have the chance to explain. If you can't, talking about spoons just confuses people.

[–] slackassassin@sh.itjust.works 1 points 6 months ago* (last edited 6 months ago)

I get that spoons are a tangable and limited resource, and that part provides for a better example. But the part that doesn't work well is that spoons have a specific value and use case. Like, you could still operate pretty normally without a spoon.

[–] princessnorah@lemmy.blahaj.zone 2 points 6 months ago

Go read the origin post I commented elsewhere in this thread. I think it helps explain why "energy" doesn't work as well.

[–] 0ops@lemm.ee 2 points 6 months ago

First I've heard of it

[–] toynbee@lemmy.world 14 points 6 months ago

Spoons are a common metaphor for effort or energy.

https://en.m.wikipedia.org/wiki/Spoon_theory

[–] starelfsc2@sh.itjust.works 15 points 6 months ago

At the same time, if you are chronically ill are you not allowed to relax? A normal person can go home and unwind, a person with chronic illness has to deal with the illness which might put them in constant pain, make them extremely tired etc, and also somehow has to spend extra effort solving it. How is that even remotely fair?

[–] Drusas@fedia.io 14 points 6 months ago

I'd add that being ill or disabled makes life more expensive, and dealing with health issues and insurance can be as draining as a full-time job.

[–] sik0fewl@lemmy.ca 4 points 6 months ago

It should be normal and acceptable to ask for help and receive it.

I understand people wanting to be independent (I'm independent and I like it that way), but I wish we could just help people out and not make it a big deal.

Asking for help shouldn't come with any expectations in return, except that someday you might need a similar favour and someone will be there to help you.

[–] KomfortablesKissen@discuss.tchncs.de 2 points 6 months ago (1 children)

Who the fuck is telling people to "try harder"? I only get told to fuck off if I'm not welcome. But the "try harder" thing is making me irrationally angry.

[–] Alph4d0g@discuss.tchncs.de 2 points 6 months ago

I had the same question. I'm not wired to say shit like that so it's surprising that it's that common.