An issue with chronic illness is the lack of understanding of what someone suffering really goes through on a daily basis. There’s a slew of diseases that fall into this category that are misunderstood (and often misdiagnosed) which can make it difficult for someone like me to live a full and productive life.
And unless you’re living the daily struggle, it can be hard to truly grasp.
What is a Spoonie?
So when I came across the Spoon Theory I had an overwhelming feeling of Ah-ha! It’s a super simple, yet brilliant way for those who don’t experience fatigue and pain-related chronic illnesses, to understand what we’re going through.
The idea is that spoons are used as a unit of energy – and the chronically ill person gets fewer spoons, whereas the healthy able bodied person gets almost an infinite amount.
The individuals who fall into this category and are battling some type of chronic illness call themselves, ‘Spoonies’!
Spoon Theory Explained
I came across the Spoon Theory example on the ButYouDontLookSick blog created by Christine Miserandino. I immediately related to her using chronic illnesses as a metaphor for having a certain number of spoons each day.
And certain tasks take a different number of spoons to complete than others. When we run out of spoons, we’re OUT! We’re done. We literally have nothing left to give – to ourselves or anyone else. Over-exertion one day can leave us stealing spoons from tomorrow and paying the price.
The greatest challenges come from managing our daily spoons.
Obviously many others have connected to this notion of limited energy levels relating to spoons since it was published in 2003. It has created a movement in Chronic illness groups from Lupus, to Chronic Migraine, to all autoimmune diseases, and mental illnesses. The spoon theory is also recognized by large health organizations such as WebMD, Cleveland Clinic, and Healthline to name a few.
The Origin of Spoons & Chronic Illness
I’m sure you’re wondering, ‘Ok, but why spoons?’ Well, it was born one evening when Christine Miserandino was trying to find the words to explain to her best friend what it was like to be her, to battle chronic illness and be sick every day.
While at dinner, she reached over to the spoons and handed them to her best friend to hold. Then Christine asked her friend to list off each task of her day, taking one spoon away from her for each.
As you can imagine, it was only a matter of a few tasks and she ran out of spoons! This experiment visually explains how quickly even small daily tasks can deplete those who struggle with chronic pain levels in their everyday life.
What does it mean to be a Spoonie?
For most, by the end of the day, they don’t have to decide whether to take a shower or make dinner. But for someone battling chronic disease, that can be a very real choice Perhaps they have limited energy and ‘used all their spoons’?
A spoonie is someone battling a chronic or invisible disease who is at risk of using up their limited number of ‘spoons’ (energy) each day. Understanding and tallying up energy levels in itself is exhausting – it takes an incredible amount of decision-making daily.
Personally, I’m in a constant battle with myself if I can make this class/event or even stay awake to see my husband come home after work. I constantly feel sick battling my medical condition but have found the ability to smile through the pain in most instances.
This further propels the idea of an invisible illness. I look ‘ok’ so I must feel ‘ok’ – Right? But even on the good days, my chronic fatigue catches up with me. The illness is still always there, linering in the background of life.
The Importance of the Spoon Theory | Illustrated
Dr. Tilahun shares the relationship between chronic illness and activity, “Most people with chronic pain experience good and bad days, as their pain intensity varies depending on the day. On a good day, they tend to overwork, which is followed by several days of ‘crashing,’ or feeling fatigued and in pain.”
Below is a chart that demonstrates the number of spoons it likely takes for a sick person to perform several everyday tasks. Some days I wake up with 15 spoons! Other days, I wake up at 3-4 spoons. Either way, I have to pace myself throughout the day.
Why I Fell in Love With The Spoon Theory
Y’all, listening to my body and putting healing first has been incredibly hard. Learning to slow down and be ok with a down-tempo life is still taking me some time to get used to. I suffer from chronic migraines & autoimmune diseases. (And recently learned I have a shotty immune system!)
Many people are like me, where we appear ‘fine’ but are internally struggling with intense pain and crippling fatigue. Daily tasks become our Everest!
I love how the spoon theory helps explain to others that we’re not being lazy, flaky, or canceling plans for any other reason than our bodies can’t do it today. We ran out of spoons. The guilt we often carry from this is a heavy load to carry.
To all my Spoonies…
Reading the Spoon Theory made me feel less frustrated and alone in my own journey of struggling with daily pain and exhaustion. I’m sure many in my situation have tried to explain to our friends and family how hard it is to get through our days battling illness. Personally, I know I’ve told my husband I wish he could feel what it’s like to be me for just 10 minutes!!
The term ‘Spoonies’ has been widely used now for over a decade to connect those suffering. Now I know I am a ‘Spoonie’ and I’m not alone in the daily fight. Christine, thanks for sharing your story with millions of people like me so we can pass it along to our loved ones.
To all my spoonies out there. I know you, I see you, I love you. You’re heard, you’re understood and you’re strong.
Hey, Don’t Take it Personal
Trust me, no one likes to be that person who constantly bails on plans or never even makes it out. As a matter of fact, this is probably the thing I hate the most – being unreliable feels awful!
Looking back, I didn’t even realize what a luxury it was to be able to make plans and have the energy, stamina, and mental capacity to do the activities I wanted. (Without worrying about pain management, bringing medications, and worrying about over-exertion.) Wow, what a joy that was! 🙂
So remember, if a Spoonie friend says they can’t make it don’t take it personally! The next time you’re together will be even more special. Promise!
Most healthy people usually have more spoons than they need on any given day, but those battling chronic illness get a very limited number of proverbial spoons and must manage them extremely carefully. If you only had eight spoons, what would you do?
The LORD replied, “My Presence will go with you, and I will give you rest.” Exodus 33:14