The Autoimmune Spoon Theory

THE AUTOIMMUNE SPOON THEORY

Emma H. 21/06/2016

Spoons for endometriosis

The Spoon Theory was devised by Christine Miserandino in 2003 when she wanted to explain to her best friend what it is like to live with an autoimmune disease. You can find her story here and it’s definitely worth a read. The Spoon Theory also gave rise to a newly coined word “spoonie” that stands for a person with an (often invisible) chronic illness.

The majority of autoimmune (and suspected autoimmune) diseases are not visible to others. The nature and impact of the disease are often difficult to describe, it is hard to reveal one’s vulnerable side, or describe unpleasant symptoms that are still somewhere in the grey tabooish zone. The hardest part is to explain how much the disease impacts one’s life even though the people around cannot see it. The Spoon Theory uses spoons as a representation of the limited amount of energy the sick person has to complete everyday tasks. Imagine you are holding a bunch of spoons in your hand (say twelve, or twenty) and for each task, activity or chore you need to give up one spoon: getting up and brushing your teeth costs you one, preparing and eating breakfast, getting dressed, getting to work, doing groceries, meeting your friends for a drink, etc. If you’re struggling with a chronic disease, you’ll have fewer spoons available to you than your healthy friends and colleagues. Depending on the nature of your disease, you may have very few spoons available every morning, or do generally fine apart from certain times of the month or moments when your disease flares up. In general, if you take care of yourself by observing a specific diet and lifestyle, there’s a chance you’ll have enough spoons to do just fine (though not to spend your life up doing crazy sports or crazy partying). The number of spoons that are available always needs to be on your mind so that you never run out of them and you always manage to complete your tasks.

There’s a chance people will never really get it

“Yeah, I get it!” many people will say. But I’m getting more and more doubtful. It’s extremely hard to get one’s own experience across. Christine had to physically put spoons into her friend’s hand and take them away from her to make her understand (and here she was thinking: We’ve been best friends forever, she knows everything about my disease, she’s literally been next to me the whole time.). Now I keep thinking about how to explain to people how extreme endometriosis pain can be. Even more so now that I’ve been able to beautifully manage the disease through diet and lifestyle. It’s so easy to forget how debilitating it can get.

Here’s the typical scenario: I mention I’m not feeling well, you know, women's issues. Everyone is very nice and understanding, saying how they get it. Especially women often chip in with how they know how bad the first day can be. But what if they don’t, really? It’s unlikely they have a clue how much pain and desperation there is under the cover. 1 in every 10 women suffers from endometriosis. That means there’s only a 10% chance they really know the kind of pain that makes you tremble on the floor, sweating like an animal, struggling to breathe and thinking you’ll throw up. Could the Spoon Theory help?

All your spoons in one basket

In my case, I’d need to re-create the Spoon Theory into a Spoon Roller Coaster Theory. There are times when I have twenty, or even thirty spoons ready for the day. (Yay!) Plus, I have a fairly good idea of which week of the month I’ll run low. I have a week-long ovulation pain, for example. That means three nights of poor sleep due to the pain. That means fewer spoons in my stack in the morning. That means I know when to do my shopping, batch cooking and when not to accept any social invitations. I also know that I will need to sleep during the day, if possible, and I’ll have to skip sports. The same (well, worse) applies for my period. It seems I have all my spoons covered, right?

Obviously, there are times when life throws challenges at you. There can be moments that cost you ten spoons in five seconds. I’ve had a really bad cough, for over three weeks. I had to go on some business trips. Therefore, I went off track with my special strict diet. And I had no time to get my groceries and meals ready. Too bad, because my period arrived. My body has decided to punish me for not caring for it well enough. The cough makes my cramps unbearable. One cough means losing three spoons at once (yes, that much pain and that much energy stolen from me). Suddenly, I realise I’m at work, my spoon supply is down to three and I have to get home. Oh, and carry the bag full of groceries that I finally got over lunch when I still had lots of spoons left (I thought). It’s raining, I have no umbrella and have to walk. But that doesn’t really matter. I need all my concentration and energy on putting one leg in front of the other, crossing at the green light, not bumping into people and, preferably, not stepping into water puddles. (How did I manage all that using up only two spoons?) Finally, I’m home, I need one spoon to change clothes and get into bed. I’ll have carrot and banana for dinner, and will do the rest of what needs to be done tomorrow, when I find a new stack of spoons in my special drawer.

Learning not to ever spend that last spoon you’ve got

Why do I say all this? First of all, it’s a reminder for myself.

If I take special care of myself, follow the Autoimmune Protocol (AIP), enjoy just the right amount of physical activity, meditate, protect my immunity and support my body to heal, I can “enjoy” a period that "only" hurts for three days and can be managed without painkillers. And what is more important, I never ever get to that desperate moment of being scared that I’ll run out of all my precious spoons. I can even get so well that I start forgetting how excruciating, debilitating the pain can be. I even start wondering whether it’s not just all in my head, maybe my perception of pain is too strong because… I don’t know… because every woman has painful periods, right?!

Another reminder for myself immediately follows: Nonsense. It’s not all in my head. The pain is very real and no, not every woman experiences this during her periods. Few do.

If I stop taking good care (whatever the reason), if I don’t continuously and relentlessly work on slowly increasing my stack of spoons, my body will immediately remind me not to take my spoons for granted. It’s my fate to have to take good care of them and value them for what they are.

I also write this openly for everyone to see. I think it’s extremely important to make people understand that if you have a colleague or a friend who lives with a chronic disease, it’s highly probable that even though you don’t see it, they have to fight difficult and exhausting battles every day.

They have to fight for that stack of spoons they’re given every morning. If you really want to understand, try and grab those twenty (or twelve!) spoons and give one away for everything you do that day. And you can go even further. If you know a person with a chronic disease, why not help them save a spoon or two. Any help can go a long way and will truly be appreciated.