fandomsecrets | [ SECRET POST #3348 ]

[ SECRET POST #3348 ]

⌈ Secret Post #3348 ⌋

Warning: Some secrets are NOT worksafe and may contain SPOILERS.

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[Dr. Who]

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[Babylon 5, Susan/Talia]

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[Neverending Story]

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11.

[Maximilian Dood and Benny]

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14. [SPOILERS for Avatar: the Last Airbender/Legend of Korra]

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15. [SPOILERS for Tsubasa Reservoir Chronicle]

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16. [SPOILERS for The 100]

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17. [SPOILERS for Legacy of the Force]

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18. [SPOILERS for Halo 5]

Notes:

Secrets Left to Post: 00 pages, 000 secrets from Secret Submission Post #478.
Secrets Not Posted: [ 0 - broken links ], [ 1 2 - not!secrets ], [ 0 - not!fandom ], [ 0 - too big ], [ 0 - repeat ].
Current Secret Submissions Post: here.
Suggestions, comments, and concerns should go here.

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I can't express how much I fucking this fucking concept. It's so "I'm a special snowflake with special words". It doesn't express anything that couldn't just as easily be expressed by saying: "I'm too ill/exhausted to do that/do more than lie in bed today." Everything about it grates on me.

I'm talking about this, for anyone who hasn't encountered it:
https://en.wikipedia.org/wiki/Spoon_theory

Fuck you.

Why is it so hard for you dickheads to get: Being social is not easy for everyone. We don't think like you, we don't act like you, but you all still expect us to follow your path, follow your words and concepts?

Fuck you.

I loathe the term and I actually have hypermobility syndrome (I've only seen it used in connective tissues disease circles, but that makes sense, since those are the one I come in contact with).

OP - Yeah, I have a chronic illness and spend 90% of the time in agonising pain or utterly exhausted and for reasons I can't articulate, it annoys the hell out of me. People aren't magically going to believe I'm in more pain than they can see just because I use spoons to describe it.

What bothers me is that while I understand it tries to make things visible, it makes it "cutesy", and I dislike this tendency of making diseases or conditions "cute" or worse, romanticizing them.

Re: "Spoonies"

(Anonymous) - 2016-03-05 01:32 (UTC) - Expand

I can't remember if I knew you were bendy too, but hi.

I'm seeing genetics specialists about Ehlers-Danlos diagnosis probably this month or next.
I have all the fun related problems so it's not really fitting with Benign JHS anymore.

I'm considering genetic testing, as the side-effects are getting progressively more noticeable over time, and I never got an official diagnosis. It just costs a bit of money, but it might be worth it. Problem is I'm overweight and that does not help, especially not with the ankles in my case.

Re: "Spoonies"

belladonna_took - 2016-03-05 16:37 (UTC) - Expand

Re: "Spoonies"

kallanda_lee - 2016-03-06 00:08 (UTC) - Expand

I disagree completely on the terminology, but I wanted to give a shout out to a fellow bendy. I have hypermobility syndrome as well, possibly EDS-H, but there's not a specialist in my state who treats it. The only one that I am aware of is at UW and is only interested in the Vascular type, not Hypermobility type. Since he's a medical researcher, he can pick and choose his clients.

Ah, that sucks! As I said in my other post, i'm considering genetic testing (there's a good clinic in the city where I work), I just worry about the cost, even with social security.

Re: "Spoonies"

elialshadowpine - 2016-03-05 15:10 (UTC) - Expand

Oh, everyone let's look at the neurotypical and marvel at their sage advice. truly they can teach us how to live.

Go fuck yourself

How many spoons did that comment cost you? Was it worth it?

As someone who's heard about the spoon theory for a long time (and who suffers from fibromyalgia and DOES have only limited spoons to give on certain days), what's so terrible about it?

It's sometimes REALLY HARD to get people who don't have 'limited energy/capacity' to understand the concept of: Okay, I could go to the mall with you, but seriously I'm not going to have enough energy to do anything else for the rest of the day.

Some people really don't get it and the spoon theory is the easiest way to explain our lack of capacity.

OP - I just don't get why it's needs a special unit of measurement since even the densest of people can understand the concept of being tired out by things. I also don't think that people who don't believe fatigue is invisible illnesses are real are going to be anymore convinced by it.

But it's just a minor irritation. More a pet peeve than anything else. I'm not going to start a war with people who do find it useful or anything.

I also don't think that people who don't believe fatigue is invisible illnesses are real are going to be anymore convinced by it.

I can understand that. And honestly, I don't think I've ever used the terminology 'offline' or even more than in an offhand comment.

I do wish people would acknowledge that just because I look young/healthy/etc it doesn't mean I'm lying about being in pain or exhausted. :| Or wish that they wouldn't laugh and pull out the old standard, "Hahahaha, oh well wait until you have kids! Then you'll know what real tired is!"

Re: "Spoonies"

(Anonymous) - 2016-03-05 03:58 (UTC) - Expand

I hate it too. I don't hate the concept, but I hate the cutesy-ness of it.

"I don't have the spoons for this! heehee" UMMMMMMMMMMMMMMMMMMM NO. I don't have any energy ever to do anything and there's nothing cute or funny about that.

Some people do appreciate some kind of metaphor to understand what chronic fatigue and pain are like, which I believe is the purpose of the original story/scenario. For that, the Spoon thing is fine. It might help in some cases, and it might not in others.

When I first read it, I related a lot, especially to the "You don't look sick" aspect. It's just that it seems to have taken on a life of its own in the chronic illness community, one that I agree, I find a little odd.

But I'm very private about my illness and never want to show weakness. I dunno. It helps some people, so I guess that's great for them; there's no need to patronize if it's not for you.

I never really liked that spoon thing either, but if it helps other people, wtf do I care?

I have epilepsy (though it's under control), I have (had?) depression and anxiety, and IMO people either understand when you tell them 'I can't do this because of x/y/z' or they don't understand no matter how you explain it to them. I mean, if you can't get that someone with a (mental) illness won't always have the necessary energy levels to do stuff, a cute story probably won't help.

But if other people find it helpful, maybe just for themselves, good for them.

This. My experience has been that people either get it or they don't, and if they don't get it, using a cutesy analogy isn't going to make them suddenly magically understand.

Well, it is a good, simple way to explain something that may be hard to explain or for some people to understand.

I use it mostly to get across how limited I am. People who are normal functioning don't realize how much they do in a day, but for me, it's "if I make lunch on the stove, I won't have anything left to take a shower" or "I'm almost out of milk, have to go to the store, DANG! That's a whole fistful of spoons I don't have.. I'm gonna be so dead tomorrow."

If they're a gamer, I can use HP bars as a reference, but not everyone I associate with would know what the heck I was talking about. Practically everyone in my country uses spoons, so it's a more relatable idea overall, imo.

I like the concept, not so keen on the "spoonies" slang but if they want to use it to find others - good for them.

I do think it is something that should be allowed to use in a casual sense by everyone, to normalise the concept and allow others to use it without feeling ashamed. Kind of like my workplace has been normalising the idea of a "mental health day". If anyone can take one, it makes those with mental health issues not seem so abnormal or "failing".

I'm okay with the concept, sometimes the energy just isn't there, but the terminology is grating as hell and makes me not want to take the person using it seriously.

"Spoonies" makes me roll my eyes (in my young day, it was just "spoons") but it expresses the problem of allocation and opportunity cost in a concrete way that "I'm too ill/exhausted to do that" does not. The point of the spoon theory is that at the moment, you might actually have the energy to do whatever "that" is, but if you do it, you won't have the energy later on to do something else that's essential.

It sounds silly, but you're missing the point. The point isn't to find a super special silly nickname for one's fatigue/illness, it's to explain to other people who DON'T understand illness in very simple, concrete terms. I assure you, there are quite a few people who don't understand that a person with, say, MS can't just rest up one day and then go clubbing till 4am, then sleep in the next day and be all better. There are people who don't understand how a sick person has to budget their energy for things like work, doctor's appointments, special occasions, etc. rather than doing whatever they want, whenever they want like healthy people do.

The spoon theory is just like a budget, for energy. Sometimes people with a really big budget don't grasp that people with a small budget has to calculate carefully and only spend what they can afford.

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