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.

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She's right (lemmy.blahaj.zone)

submitted 4 days ago by [email protected] to c/chronicillness

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[–] [email protected] 36 points 4 days 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.

[–] [email protected] 5 points 4 days 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 4 points 3 days ago

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

[–] [email protected] 15 points 4 days 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?

[–] [email protected] 37 points 4 days ago (3 children)

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

[–] [email protected] 44 points 4 days ago* (last edited 4 days ago) (3 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 22 points 4 days ago

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

[–] [email protected] 13 points 4 days ago (1 children)

This is a complete tangent, but I work at an office job, where we're allowed to work remotely, but we meet up in the office typically once or twice a week. And I have this colleague, who decided a few weeks ago to do a work+travel thing, where she stayed in a city at the other side of the country and worked from there for a whole week.

Then we talked about when we should meet up in the office again in the week afterwards, and I suggested Tuesday, so she'd have Monday to kind of recover. As we talked, she mentioned that she would return on Sunday evening and that she had already separately made plans to come in on Monday to meet up with other colleagues, and then for separate organizational reasons, she ended up deciding to also come in on Tuesday.

Like, fuck me, here I am being mindful of her spoons, when she's more like a bucket chain excavator.

[–] MutilationWave -5 points 4 days ago (1 children)

So I work a physical job with mental components. I'm always the lead on a team so this is my job. I have to do a lot of spreadsheet work, emails, teams, etc. Then I have to physically work quite hard most weeks. I often have to travel for work, sometimes many hundreds of miles. If I get lucky I get to fly.

What you posted seems almost like a joke, for real. Monday I have to get up early, rent a U-Haul, go and pick up heavy equipment, transfer a shitload of tools into the rental truck, drive two hours, make nice with everybody at one location, get forms filled out, badging, etc. Then drive another two hours to where I'll be working Tuesday. I will unload hundreds of pounds of gear, work all day, and reload all that gear that evening. I absolutely have to get Tuesday's work done or we're fucked. After I get the test results from my work on Tuesday, I'm going to meet another guy in the middle, 45 minutes each way, and give him the testing equipment. Then I'll be driving another two hours back to the original site. On Wednesday I'll be unloading the gear again, and I can start the primary job.

When I see someone saying oh no she had to get in on Sunday night, then come to work for two days it's a fucking joke.

Check your goddamn privilege.

[–] [email protected] 6 points 4 days ago (1 children)

What I'm saying is that I have chronic fatigue+pain and I'd be on a solid 9 out of 10 on the pain scale for the whole of Monday. I would be genuinely worried that I'd pass out from pain at some point. I cannot even process what it would do to me, to try to also come in on Tuesday. That's why I completely misjudged how difficult this would be for her, even though I was aware that she's healthy. I just assumed even healthy people would run out of steam, if they're doing things multiple days in a row.

If your levels of health allow you to work that job, then ~~check your goddamn privilege~~ honestly good for you.

[–] MutilationWave 2 points 4 days ago

Hey, I'm sorry.

I was aware of what community I'm in but I assumed you were describing a healthy person. Which ended up being true but I didn't take it from your perspective.

I'm generally physically healthy but not mentally. I'm on several medications for my mental health. I have to bring myself to what feels like death to me, from exhaustion some weeks, some are not so bad.

[–] dance_ninja 4 points 4 days ago

Thank you for sharing.

[–] [email protected] 28 points 4 days ago* (last edited 4 days 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.

[–] [email protected] 22 points 4 days 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.

[–] [email protected] 10 points 4 days 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.

[–] [email protected] 2 points 3 days ago

First I've heard of it

[–] cAUzapNEAGLb 7 points 4 days 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

[–] [email protected] 6 points 4 days 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.

[–] [email protected] 0 points 4 days ago (1 children)

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

[–] [email protected] 3 points 4 days 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/

[–] [email protected] 1 points 3 days ago (1 children)

I did, and the point was about general translation.

[–] [email protected] 1 points 3 days ago* (last edited 3 days ago) (1 children)

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

[–] [email protected] 1 points 3 days ago (1 children)

Surely the most mature way to take any constructive criticism.

[–] [email protected] 1 points 3 days 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?

[–] [email protected] 2 points 3 days ago (1 children)

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

[–] [email protected] 1 points 3 days 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.

[–] [email protected] 2 points 3 days ago* (last edited 3 days ago) (1 children)

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

[–] [email protected] 0 points 3 days ago (1 children)

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

[–] [email protected] 2 points 3 days 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.

[–] [email protected] 1 points 3 days ago* (last edited 3 days 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.

[–] [email protected] 4 points 4 days 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 3 points 4 days 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.

[–] [email protected] 2 points 4 days 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.

[–] [email protected] 3 points 4 days ago* (last edited 4 days 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.

[–] [email protected] 5 points 4 days 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.

[–] [email protected] 2 points 4 days ago

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

[–] [email protected] 1 points 4 days ago* (last edited 4 days 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.

[–] [email protected] 1 points 4 days ago

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

[–] toynbee 14 points 4 days ago

Spoons are a common metaphor for effort or energy.

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

[–] [email protected] 4 points 3 days 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.

[–] [email protected] 14 points 4 days 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.

[–] [email protected] 2 points 3 days 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.

[–] [email protected] 2 points 3 days ago

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