this post was submitted on 07 Dec 2024
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Chronic Illness

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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

  1. Be excellent to each other

  2. Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc

  3. 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.

  4. No denialism or minimisation This applies challenges faced by chronically ill people.

  5. 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.

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[–] FundMECFSResearch@lemmy.blahaj.zone 28 points 2 weeks ago* (last edited 2 weeks 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 22 points 2 weeks 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 10 points 2 weeks 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 7 points 2 weeks 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 6 points 2 weeks 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 2 weeks 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 2 weeks 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 2 weeks ago (1 children)

I did, and the point was about general translation.

[–] princessnorah@lemmy.blahaj.zone 1 points 2 weeks ago* (last edited 2 weeks ago) (1 children)

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

[–] slackassassin@sh.itjust.works 1 points 2 weeks ago (1 children)

Surely the most mature way to take any constructive criticism.

[–] princessnorah@lemmy.blahaj.zone 1 points 2 weeks ago (1 children)

The fact you can't respect that I ran out of spoons for arguing the point, kind of just proves my point that you don't understand the term, doesn't it?

[–] slackassassin@sh.itjust.works 2 points 2 weeks ago (1 children)

No. Because here you are and I also don't have forks.

[–] princessnorah@lemmy.blahaj.zone 1 points 2 weeks ago (1 children)

Here I am, after sleeping and recovering some spoons. That are precious, that I still don't want to waste on changing your mind, when you're clearly not willing to understand.

[–] slackassassin@sh.itjust.works 2 points 2 weeks ago* (last edited 2 weeks ago) (1 children)

It's ok, you obviously don't want to understand either, so it will cost nothing for that part.

[–] princessnorah@lemmy.blahaj.zone 0 points 2 weeks ago (1 children)

Do you have a chronic illness, or did you just come into this thread to argue with those that do?

[–] slackassassin@sh.itjust.works 2 points 2 weeks ago (1 children)

I do and so do my family members. Can you admit now that you are not willing to understand a simple point without trying to lecture ad nauseam as if the minor critique was detrimental to the entire concept?

Because here's how it actually works. I'm blocking you because you're toxic, and this is for real not worth my energy.

[–] princessnorah@lemmy.blahaj.zone 1 points 2 weeks ago* (last edited 2 weeks ago)

¯\_(ツ)_/¯

I guess me not wanting to try to argue the point was toxic. My apologies that I called into question you having a chronic illness though. I've wasted too many spoons on arguing with people who don't about this stuff in the past.

[–] sartalon@feddit.nl 4 points 2 weeks 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.

[–] jol@discuss.tchncs.de 3 points 2 weeks ago* (last edited 2 weeks 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 2 weeks 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 2 weeks 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 2 weeks ago* (last edited 2 weeks 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 1 points 2 weeks ago

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

[–] DogWater@lemmy.world 3 points 2 weeks 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 2 weeks 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.

[–] 0ops@lemm.ee 2 points 2 weeks ago

First I've heard of it