If you’ve ever tried to explain your chronic illness then you’ll know how hard this is. It’s not just a medical condition. It impacts your whole life. That's why referring to yourself as a spoonie will come in handy.
A spoonie is a term used to describe anyone with a chronic illness who suffers from limited amounts of energy. It evolved from the ‘spoon theory’, which is a clever analogy used to show how your energy levels are limited when you have a chronic illness – using spoons!
It’s effective at explaining your limits to your friends and family in a way that they will understand.
The spoon theory was created by Lupus warrior, Christine Miserandino, in 2003.
It’s been such a powerful story that I will go as far as to say that she changed the language that people with chronic illnesses, i.e. spoonies, use to describe themselves.
This is because instead of using the term “chronically ill” all the time, reminding yourself of the fact that you’re ill. But calling yourself a spoonie is soft, sweet and makes you feel part of a community instead.
Spoon Theory Explained
Christine Miserandino is an award-winning blogger, chronic illness fighter and advocate. She came up with the spoon theory when one of her friends asked her what it really felt like to be sick.
She came up with the spoon theory in an attempt to make her explanation as real as possible for her good friend (in a time where she was very tired and in a great deal of pain).
How? By giving her a whole bunch of spoons – 12 to be exact.
Spoons equal energy
Christine explained how each spoon gives you enough energy to complete one task that day. Call it an energy ‘currency’, if you will.
Every time you accomplish a task, it costs you a spoon. If you run out of spoons for the day – that’s it! No more energy to do anything else. And there’s no guarantee on how many spoons you’ll be given for tomorrow.
Sometimes you can “borrow” the next day’s spoons, but then you’ll have even less when it comes.
The reason why this concept works so well is that it gets non-spoonies to think about how much liberty they have to do many activities during the day – at no expense.
Getting up and going to work is not one spoon – it’s four! You can deduct one spoon just by opening your eyes and getting out of bed. Another for showering, another for making breakfast and another for driving to work.
These four activities are barely even considered activities for non-spoonies. And until you can convey how much more taxing it is for you to live – no one can start to understand.
“I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted,” says Christine in her article.
Managing life as a spoonie
As I mentioned earlier, sometimes there is the option of taking some of tomorrow’s spoons for today (if you really need too).
But this isn’t the best idea because it will leave you more depleted than usual the next day. Consider this energy ‘debt’.
The consequence of running out of spoons is that you have absolutely no energy left to continue doing anything that day – and it’s painful both emotionally and physically.
For example, if you finish work and only have 2 spoons left – you have no choice but to eat dinner and go to bed.
There’s no energy left to read, speak to a friend and you can forget about meeting for after-work drinks!
Most of the time, your spoons get used up pretty quickly doing normal daily activities like eating and showering. That’s why it gets so hard to manage day-to-day life as a spoonie.
It’s not only hard to control how much you do and how quickly you do it – but it’s hard to see others continue their lives effortlessly in comparison.
Serious energy limits can leave you feeling left out from any social gatherings as you often don’t have enough spoons to even get to them.
And it can be discouraging when it takes you three times longer to complete a task than it would for anyone else, because of how much rest you need to recuperate.
So it’s not just about running out of spoons and needing to rest. It’s about what those spoons allow you to do daily and being aware that there’s no bargaining process involved.
If you run out – you run out! And there’s nothing you can do to get more spoons until you rest.
There’s something so powerful in this story and how it can enlighten our loved ones and friends. If you’d like to know more about Christine’s story and the details of her theory – it’s definitely worth a read: The Spoon Theory written by Christine Miserandino
The Spoonie Chart
I always find that analogies are best explained with pictures. And it also makes the activity a little more fun to do.
Here are two spoon theory charts that I created. Both are great for you and your loved ones to look at and use.
It’ll help you, as someone with a chronic illness, think about how you use and talk about your energy levels.
And it’ll help your loved ones see things from your point of view so that they can better understand how much your daily life is impacted by your “spoons”.
The first poster shows how you may use your spoons in a day:
The second poster allows you to decide how you want to use your own spoons, and what the possible outcome of your decisions may be:
What Does Being a Spoonie Look Like
Managing life as a “spoonie” is difficult in ways that no one (without a chronic illness) could possibly imagine.
From broad issues like mobility, energy levels or expenses to the most detailed concerns like form filling – chronic illness will present you with challenges that, before your diagnosis, you didn’t even acknowledge as challenging activities.
Here are 10 of my favourite examples of what it means to be a spoonie. And I’m sure you’re going to relate to almost all of them.
You know you’re a spoonie when…
- Medical treatments cost so much that you actually see what you can do from home.
In the photos above, you can see me doing a little microcurrent therapy to soothe my overactive nervous system. My therapist used this machine on me and worked so well that I decided to research it.
Turns out it’s a user-friendly device that’s cheaper to just buy and use at home – so I did!
- Filling out forms about your health is stressful. There’s not enough space or time to accurately explain what you have and how you treat it.
If you’re anything like me and you’re asked: “Are you currently taking any medication?” You end up stuffing as many words into the designated writing blocks as possible and just carry on writing at the bottom of the page.
- You start buying shoes and clothes for comfort before anything else. Everything is hard enough to deal with as it is – you don’t need fashion to make life harder.
- You have perpetual moments of sadness, anger, joy, despair, hope, frustration, and happiness. All in one go. And it leaves you overwhelmed and ready to ball into tears for no reason. Exhaustion and pain will do this to you.
- Anything you want to do gets planned in advance. There’s no “winging it”. Risking going out without checking to see if you will be able to cope with it first is not going to work.
- Completing small tasks can be big achievements – like showering or putting a bra on – and your new favourite reward when you get these things right is a nap!
- You’re a little forgetful. In fact, you’ve gotten used to saying “I’m so sorry, but it totally slipped my mind,” to your loved ones. You may have a stash of chocolates to hand out as an apology when you mess up big time!
- You’re the resident nudist now. Since you strip for doctors all the time, spend days in hospital overalls and let others help you get dressed – being naked barely phases you anymore.
- You’re the go-to person for anyone who needs over-the-counter meds on demand. Headache, heartburn, gastro or fever – you name it! You probably have it stored in one of your medication boxes.
- Taking risks is stupid and you’ve learnt this the hard way. You now have your own flare starter-kit that comes with you wherever you go. No more issues at work or while you travel if you can avoid them.
Heat pads, chilled music, neck cushion, socks, blankets, comfy clothes, Netflix, tea & furry family members usually fall into this.
Feeling Guilty About Being “Lazy”
You’ve had a heavy day, you’ve run out of spoons and you lie down for a nap. Thing – it’s only 11:30 am.
There’s nothing that can kick the feeling of guilt to the pit of your stomach as when you ask yourself: “Wait… is it because I’m sick or am I just lazy?”
Worst of all, you spend so much time trying to prove to others how unwell you really are, that eventually their words can rig little holes of insecurity into our minds.
“Maybe I am just being stubborn and lazy?”
“My cousin’s friend’s wife’s doctor’s daughter had ME 10 years ago and she didn’t sleep this much! What’s wrong with me?”
Some things you need to remember
- Every spoonie is different so don’t compare yourself.
The way you cope with your condition is not going to be the same as anyone else. Because no two people experience pain in the same way or have the exact same symptoms and lifestyles.
- You’re fighting an invisible battle – it’s exhausting.
No one may see the true extent of what you’re going through but that doesn’t mean it’s not happening. When you have a lot less energy than others at work or at home – remember to be your own cheerleader.
- You haven’t asked for this life.
When you need help from your loved ones or find that you are dependent on them for survival – it feels awful. But this is an extreme situation that needs extreme action.
Remember that your friends and family love you and want to help you in any way they can, especially since there’s no cure. If the tables were turned – you would do the same to help them.
If you’re struggling with guilt right now, I totally understand! This is something that I have struggled with a lot myself.
I know how awful it feels to rely on others or feel like you’re causing them unnecessary stress.
But it’s something that you need to work on as a spoonie. These are cards you were dealt – you didn’t choose this life. So you can’t let such draining emotions consume you when you’ve got a much bigger fight ahead of you.
This is a must-read article on coping with guilt if you’d like some pointers on how to make practical steps forward right now: Overcoming Guilt and Chronic Illness
5 Things You Should Know About Spoonies
This little section is here for you to read with your significant other or loved ones in your life. Because part of being a spoonie and encouraging a healthy mindset is by encouraging healthy relationships.
It’s really hard to keep your spirits up and your motivation fired when you feel alone or misunderstood – that needs to change.
Remember that your friends and family love you but this unusual and challenging circumstance can get frustrating for everyone involved. Especially because we all have our own ways of coping under stress.
A little compassion from both you, as the spoonie, and your loved ones will go a long way if you start to communicate more honestly with one another.
- We hate letting you down.
Whether we cancel plans, leave early, forget commitments or go silent for 3 weeks – it eats us up inside.
Please know that socialising is draining. And when our pain is unbearable it’s hard to do anything but try to make it through the day.
- We know you want to say positive things to us – but some of these words do more damage than good.
Saying things like, “but you don’t look sick” just reminds us of how hard we had to fight to prove our pain was real in the first place.
If you want to tell us that we look well, just say: “I can see how hard you’re fighting and your strength shows.”
- When we tell you we’re in pain – please know it’s serious.
Our pain is extreme, it’s vivid and it doesn’t go away. We’re really sorry when we get grumpy and emotional – but wouldn’t you?
- If you want to help us and you don’t know how – hugs and wishes are the best.
Knowing you’re there for us is the best support we could ever ask for. And if you want to get us an actual gift – a drug store gift voucher is the best thing ever. (Being a spoonie is expensive.)
- We hate it when you pity us.
Although showing empathy is really important, going as far as to say things like, “wow your life is awful” is not helpful in the slightest.
We spend all day trying to motivate ourselves and strengthen our minds – so let’s focus on the good which is helpful and not the bad which makes us feel like sh*t again.
There’s so much more to understand if you want to help a spoonie out. So if you’re a loved one that’s eager to help. Or you’re a spoonie who want to encourage a loved one – this article is a must-read: 30 Things Chronic Pain Sufferers Want You to Know
The Best Spoonie Memes
When something is relatable – memes will be made about it. This includes the trials of being a spoonie!
One of the reasons I love sharing these snippets is because it helps us giggle and remember we’re not alone right now.
So to end off this article, I thought I’d show you my 11 of my favourite spoonie memes that are too good not to share.
See if you can finish the sentence “you know you’re a spoonie when…” it’s a really fun activity that releases your frustrations and can have you chucking for hours.
If you have anything relatable that you’d like to share with the spoonie community – I’d love to hear it.
Have a wonderful day and stay happy!