Get Everything Done

Learning, I thought of you when I read this excellent description of what it's like to manage your workload when you are dealing with chronic pain or illness. I hope you're well.

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

I disagree, I don't think that's an "excellent description" of what it's like to manage your workload when you're dealing with chronic pain or illness at all. It's the author's own state of mind coming out as self-pitying victimhood, automatically demanding sympathy without accountability and taking the moral highground. But a search for this spoons thing finds that it's really taken off as a meme. I despair.

I'll tell you how you manage your workload when you're ill. You adjust your expectations based on your individual reality, you communicate with people where necessary and then you crack on and get on with your life within your limits, ensuring that you don't use those limits as a convenient excuse to duck out of things you'd prefer not to do, because that turns out to be very easy to do.

I had epilepsy for a few years years and let me tell you, nothing will mess up your plans for the day like going unconscious, hitting the ground from standing, stopping breathing for 30 seconds and waking up covered in vomit surrounded by responders and paramedics and well-meaning colleagues, taking 3 hours to become fully conscious and then feeling battered for a week while your muscles restore their glycogen and heal and your petechial rash fades. I managed my workload just fine and didn't need spoons to explain the situation to anyone who wanted to know more, because I never had a victim mindset over it. Some people do however, but that's them, not the illness.

We all have things in life to deal with which take us away from our goals, so no-one is special here, and it's all relative, the author is far more able than somone who has lost all their limbs and mobility in an accident, for example. It's how we think about things that makes our reality, and we can either dole it out with rations of spoons or we can get on living it. Once it's gone it's gone.

EDIT: someone else with Lupus doesn't like it http://itwaslupus.tumblr.com/post/2710855701/spoon-theory-garbage

Rant over. I'd rather be honest even if it's unpopular.

Chris

I don't think the "spoon theory" article is really about managing workload in the face of a chronic illness; it's more about how to explain life with a chronic and "invisible" illness to someone who doesn't have experience of illness. It's not about having a victim mentality, but about explaining that the limitations <i>that most people can't see</i> are very real.

When an illness has obvious physical consequences and manifestations - paraplegia, severe seizures, side-effects from radiotherapy, etc. - other people might not understand how much harder life is, but they do tend to understand that life <i>is</i>harder. For hidden illnesses like lupus, severe depression and so on with no obvious physical manifestation, many people with little experience of severe illness do not easily understand that seemingly-simple tasks like getting out of bed or making a phone call can require significant amounts of energy.

I didn't read the spoons theory as a case of "my illness is worse than yours" or an attempt to diminish the experience of someone with paraplegia or epilpsy; it's just someone's attempt to explain that the debilitating effect of some "hidden" illnesses can be just as severe as the more obvious ones, just in different ways. Yes, it has some flaws (what analogy doesn't?) but it illustrates that aspect of illness in a way some people might get, if they haven't got it before.

Hi Tim, yup understood, it's not about how to get stuff done when you're under it. But I think that as an explanation of what it's like it's someone's personal feelings which have been picked up on and turned into an objective explanation for everyone, and then developed into a meme, that's what bugs me. It's like "Oh you suffer from lupus, it's okay, I know nothing about you but I know about the spoons, you rest up". It turns the individual, with their own daily ups and downs (just like we all get to varying degrees) into "a sufferer". It dehumanises and victimises them. It does the very opposite of what it's supposed to do. It's the kind of labelling the disabled community have spent years moving away from.