Where does the word spoonie come from?

Have you seen the #spoonie hashtag on social media and are wondering what it’s all about? Five women with chronic health conditions share what the word means to them.

If you’ve ever come across chronic health communities on social media, you’ll probably have noticed the hashtag #spoonie. It’s a term used to help people living with chronic illnesses describe how their conditions impact their energy levels on a daily basis. And now the hashtag is trending on TikTok. But how can a hashtag help explain symptoms?

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The concept was originally coined by lupus patient and chronic illness advocate Christine Miserandino, who wrote the blog post The Spoon Theory. In the post, Miserandino describes how she explained to a friend in the simplest terms how living with an autoimmune condition affects her life. Most healthy people don’t need to worry about the knock-on impact to their energy levels from doing seemingly mundane activities, such as getting dressed or driving to work; The Spoon Theory seeks to address the ways in which chronic illnesses can do just that. 

Miserandino cleverly came up with the concept of describing someone with chronic illness as being limited to 12 spoons per day, with every activity using up a set amount of spoons. For example, it may take two spoons to style your hair, three to make a meal and four to exercise.

If a spoon is a unit of energy, when they’ve all been used up that day, so too has a ‘spoonie’s’ capacity to manage without feeling more unwell. Should we go over our allotted spoons, that’s when post-exertional malaise (the worsening of symptoms) can kick in, which will restrict the next day’s activities too. Similarly, because spoonies have a finite set of spoons to work with on a day-to-day basis, they often have to choose between which activities they do or miss out on.

As someone living with an autoimmune issue myself, I know only too well how accurate this spoon metaphor is. I regularly use more spoons than I’ve got. If there’s a party or occasion I don’t want to miss, I’ll need to limit other activities to catch up on spoons the next day. That means planning for the fact that social events or longer work weeks come with enforced rest time, otherwise my body will most likely crash with crushing fatigue.

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A flare-up of symptoms or stress caused by appointments or unexpected life events can impact the spoon count further and daily usage fluctuates too. That’s why the spoon theory is so accurate and helpful; it succinctly breaks down the impact that symptoms have on daily life. And as I’ve found, being able to describe the experience of enduring a chronic condition to others makes life a lot easier and adds an element of much-needed control.

One of the trickiest parts of living with chronic illness is finding the best words to articulate the energy juggle, especially when my symptoms are busy fogging up my headspace. And it’s from the huge #spoonie community on Instagram that I’ve found amazing support. In fact, the #spoonie hashtag has racked up over 27 million views on TikTok.

With that in mind, we asked five women how using the word spoonie helps them articulate life with a chronic illness.

“The fatigue experienced by those with chronic illness is such a unique and debilitating symptom. It is not just tiredness. When I first was introduced to the spoon theory, I thought, wow, there are others who have to navigate their day this way – I felt so seen.” Mimi

“The spoonie concept helped me to understand and explain exactly how my energy is limited compared to others. It then provided me with an opportunity to connect with an incredible community, and I have felt supported as I navigated surgery, medications and new diagnoses including Crohn’s disease. Chronic illnesses can be so isolating, but the familiarity and understanding you receive from those living with similar experiences is huge.”Ali

“Without purposefully calculating it, I’ll subtly build the spoon theory into my recovery from things, or to avoid doing some activities because I know I’ve used my energy already. This is mostly when my symptoms are flaring and as I start to feel less ill I do notice being able to increase my spoons or that I have the ability to do more.” Eve

“I have lupus and being seen and understood without having to explain myself is a comforting thing. In the community it doesn’t matter what illness people have, there’s no competition, just pure sympathy and an understanding that we all have limited spoons each day and how draining that is.” Mollie

“Having ME, the spoon theory opened up the world of chronic illness communities to me. It’s not necessarily a word I use for myself any more, but I’ll forever be gratefulfor the people it’s led me to. These online communities aren’t without their faults, but in many ways they’ve saved me, and my day-to-day life is richer for having them in it.” Jenny @thisthingtheycallrecovery  

As these women have so powerfully shared, there’s essential advocacy to be found in using the term spoonie for summarising a daily reality and being able to tap into a supportive chronic health community. While symptoms can painfully limit movement and activities while causing feelings of grief and disappointment, being presented with a clear way to navigate and explain life with a chronic illness is an invaluable source of support. Which we think is a brilliant resource for women that is well worth shining a spotlight on. 

Images: Getty

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