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.

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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”.

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founded 9 months ago

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The "spoons" metaphor. Is it helpful? (lemmy.world)

submitted 3 weeks ago* (last edited 3 weeks ago) by FarraigePlaisteach@lemmy.world to c/chronicillness@lemmy.world

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I was telling someone recently about the "spoons" metaphor. I guessed they probably hadn't heard that before so before I said what I really wanted to say, I explained it. Basically, it means "unit of energy" and the idea is that we each have a different number of units each day depending on our ability / health.

In the time that it took to explain that, I could have just said what I needed to. How did it become so popular? The spoon doesn't even symbolise anything itself. So while I think it made a good visual demo when the first person presented it, I think it lands differently with people in conversation.

It is somehow reassuring to hear other people using it. It has shown me how many people struggle this way that I never realised before. But I think I'll stick with "batteries" or something that's easier to explain to people who aren't in the loop.

Thoughts?

Edit: The metaphor was invented by Christine Miserandino to illustrate her experience of lupus to someone in a café. I assume the cutlery was the best illustration device to hand in that situation and quite effective.

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[–] FarraigePlaisteach@lemmy.world 3 points 3 weeks ago

I agree with you - at least in my interpretation - that activities are implied to demand the same level of energy every time. The variability is accounted for by having a different number of "spoons" each day (unknown to us in advance).

I like the gas in the tank metaphor, although it's used so often in association with healthy fatigue that I'd be concerned that it might trivialise the degree of deep, all-encompassing exhaustion I'm really talking about. A new vocabulary is probably ideal for the uniquely surreal experience that is M.E./C.F.S.