One of the most popular ways to explain limited energy in chronic illness and disability is the spoon theory. It is an analogy developed by Christine Miserandino back in 2003. She describes sitting in a restaurant with a friend, who asks her what it is like to have a chronic illness (in her case, Lupus). She then grabs a number of spoons from some tables, and uses them to represent units of energy. When you have an energy-limiting chronic illness, you have a limited number of spoons. Normal actions that healthy, abled people do not have to think about, such as getting dressed or having breakfast, take up a spoon. And before the day is over, all of our spoons might already be gone, and won’t recharge until tomorrow. We might be able to borrow spoons from tomorrow, but that means we will have even less spoons tomorrow.
The spoon theory is a very visual, easy to understand analogy about how little energy resources chronically ill and disabled people have and how we constantly have to plan our time carefully in order not to run out of spoons – which is probably why it became so popular. People often use the term ‘spoonie’ to refer to anyone who has an energy-limiting illness or disability, which can be a great way to identify with and relate to each other.
However, there has also been a lot of criticism towards the spoon theory. I have noticed a lot of people feel like the term ‘spoonie’ is a bit childish. A lot of people also feel like the analogy is flawed. The theory seems to suggest that as long as you plan well, and rest a lot, that we have some sort of control over our illness. But not everyone does. Other people feel like the analogy does not work for them at all, but prefer other metaphors such as the battery analogy. This describes your energy as a faulty phone battery, which never fully recharges.
And to be honest: I agree with the criticism. The battery analogy is much closer to what I experience than the spoon theory, and I understand why people feel like ‘spoonie’ sounds a bit too cutesy and childlike. But at the end of the day, I still relate to spoon theory as well – and here is why.
Before I was diagnosed, I did not know what was ‘wrong’ with me. I did not know I was allowed to identify as chronically ill, let alone as disabled. All I knew was that I was tired all the time. That I never woke up rested. That cycling to and from school felt impossible, and I had to push myself to keep going. That when I came home, my brain felt like it was full of cotton balls and I could barely do my homework. That when I went to university, everyone else seemed to be able to juggle studying, a part-time job, a social life and living in a student house – when I went to a university close to home so I could keep living with my parents, barely had a social life, and still struggled.
So when my mom found the spoon theory and showed it to me, this was something I could relate to. This was something I could use, even though I wasn’t diagnosed, even though I didn’t know what I had. I now knew one thing: that I was a spoonie. No matter what the cause was, no matter whether my illness would turn out to be physical or mental – this was a term I could use. This was an analogy I could use to explain to people why I couldn’t do as much as they did. And most importantly: it was an analogy I could use to understand myself.
Although now, years later, I know a lot more about the illnesses that I have, I do identify as chronically ill and disabled, and I no longer think spoon theory is the best way to describe my fatigue – I still relate to spoon theory and the word spoonie. It was the first word I had to describe my experiences. The first time I knew that I was not alone and that no matter what illness I had, I had a community full of people who understood. And for that, I am forever grateful. Yes, the analogy may be flawed – but I definitely think it has its use.
Len's Cup of Tea 