Empathising with people who are ill is natural. When you encounter someone whose experience is outside your own realm of knowledge, then you do your best to relate it to what you know. However, with illnesses that involve pain and fatigue, that can be incredibly frustrating as well. We all know what it’s like to be in pain, and we all know what it’s like to be tired, so people try to relate their own experiences of pain and tiredness to those of someone whose condition involves, or hinges upon, those aspects. However, that actually hurts more than it heals. It becomes a painful reminder of what things are like for people who can rest and recover, and it tells me that they don’t have any kind of a grip on the way I’m forced to live my life, dogged by pain making me nauseous, gastrointestinal problems, bladder problems, bowel problems, lower body paralysis, upper body muscle weakness, and that’s aside from this pernicious “exhaustion” or even using the word “illness” – which for most people brings up the memory of a bout with the flu, not a condition that saps vital areas of your brain and consciousness
I could try and give you a metaphor here to explain my fatigue in ways you could maybe relate to better, by talking about having rocks tied to you, or wading through treacle, but in the end these symptoms simply cannot be explained in ways people who haven’t experienced them will understand, especially when you get into the nuances of exhaustion versus muscle fatigue versus spoons remaining,
At one point I hoped ‘spoon theory’ would work to explain at least one aspect of this to people who don’t understand any other way, with the idea being that you have enough capabilities to do X number of activities (possibly of specific types), after which you will be unable to do anything else. This is by no means limited to those with physical illnesses alone, and I’m sure I’m guilty of the following, but it enrages me when people post on facebook about how spoonless they are because for me spoonlessness means an absolute inability to continue. It means my sympathetic and autonomic systems are shutting down, my brain is begging for my blood, and I am fighting to be conscious – because once out of spoons, out of spoons. Desire has no impact on this and nor does necessity, it becomes a case of having to stop in my tracks and rest. Things that cause this aren’t challenges like the London Marathon, they’re challenges like transferring to the chair rolled through to the bathroom for me to use the toilet, or trying to sit in my electric wheelchair outdoors for half an hour – the former being (generally) the only time I am able to spend out of bed in a given day – and that alone uses most (or all) of my spoons for the day, depending on how ill I feel.
The loudest voices in the disabled community will be those of us who are least affected by disability, and that’s what’s happened here – well meaning disabled people have used the word to substitute for “energy”, because their energy is limited, and abled people have picked the word up as a substitute for that. I use the term less and less now, as do other disabled people I know, because as the meaning has changed, it’s become impossible to communicate to people who don’t experience it, the degree of illness that it can reflect.
And that’s the key to it all in a way – that this is illness. It isn’t just a normal tiredness but an awful mimicker with no name of its own. My body might be so fatigued I can’t lift my arms or head, or so exhausted that I fall asleep in my tracks – and this is a daily thing. No experience of tiredness outside of illness really relates to it, because it is such a different experience. The closest I can come is the first few moments of coming round from a general anaesthetic, when you’re fighting through a fog even to open your eyes, or blink – but even that doesn’t reflect the devastating impact of this day in, day out sensation. There is no real way of explaining what it’s like using current language, and the one piece of language that felt vaguely appropriate has been appropriated by people who use it to mean the same as “energy”, while for some people, the idea of energy is a mystery, something almost impossible to remember.
I, at least, live in a world beyond energy. I don’t remember when I last experienced it. This isn’t about having low energy, it’s about existing in a world without it, where every movement is an act of will, and has to be prejudged against what I still have to do that day. It isn’t about being tired after a long shift, knowing that a good sleep will refresh you, it’s about there being nothing to refresh you, however much you rest and sleep. Unless you are also seriously ill, you have no understanding of what I’m trying to elaborate. Which, to some extent, makes this activity pointless, academic, a waste of valuable spoons, but I am so tired of people trying to empathise with how I feel, and instead of opening their minds up to an experience they cannot understand, any more than they can understand the feeling of the loss of the use of one’s legs, they close down and try to fit my experience into the little boxes that they have in their head. Well it doesn’t fit there. I’m dangerously sick, barely able to remain in independent living, and there better words you could say than “I’m really sorry you feel so awful – I know I can’t understand it, but I’m here for you anyway.”
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