The Power of a Spoon: How the Spoon Theory Explains Life with Chronic Illness

What is a “Spoonie”? What is the Spoon Theory? These are questions that you might ask, especially if you are new to the chronic illness community, or you know nothing about it.

Chronic illness, or invisible illness, are any conditions that a person suffers from that cannot be seen or understood just by looking at the person. While some people can easily be defined by disability – they are in a wheelchair, they walk different, they have a cast or are disfigured – some illnesses cannot. Illnesses like Lupus, Ankylosing Spondylitis, Chronic Fatigue Syndrome, Long Covid, and many more cannot easily be defined by just looking at someone and chances are they don’t talk about it much outside of their immediate circle, so knowing if they have a chronic illness or not, is near to impossible to tell.

Pretty much all chronic, invisible illnesses come with the symptom of fatigue. Fatigue is different than being tired. Imagine tiredness is like being low on battery after a long day at work. You might feel sluggish, like you don’t have quite enough energy to run around, but a good night’s sleep charges you right back up.

Fatigue is more like having a dead battery. You feel super tired all the time, even if you get enough sleep. It’s like there’s something draining your energy, making it hard to concentrate, do your usual activities, or even just feel like doing something as simple as scrolling on your phone. Fatigue can sometimes be a sign that something else is going on in your body, like a chronic illness. Remember, tiredness is normal, especially after a big day. But fatigue is different.

What is Spoon Theory?

Spoon theory was introduced by Christine Miserando several years ago to explain to her friend what it was like living with a chronic illness and the fatigue that takes over your life. She describes to her friend how most people start their day with an unlimited number of “spoons” or possibilities. As they were at lunch, she decided to use the spoons on the table to illustrate.

Christine illustrated that her friend, who did not have a chronic illness, starts her day off with an unlimited number of spoons and therefore can choose to do any activity she desires throughout her day. She then explained to her friend that as someone with a chronic illness, as she plans her day, she needs to know how many spoons she has available and how many spoons each activity will require so that she knows what she could actually accomplish in a day or not. Take a look at this image to see a good description of having to measure spoons for a day.

For each of us, and for each different day, the number of spoons to complete any particular activity could cost us more or less, but you get the general idea. Spoon theory is an easy way to visually explain the life of a chronic illness person.

Life as a Spoonie

As a Spoonie myself, I can verify that it is challenging to live life as a spoonie. I am a person who likes to plan, but it’s often hard to know how to fully plan ahead since I often do not know how much energy I will have until I wake up. Even if I plan when I wake up, sometimes an activity that would normally only cost me 2 spoons, that day might cost me several more.

I am slowly learning how to pace myself better every day. If I have a hard time waking up, and I don’t have an appointment to go to, I am learning to let myself lie in bed a little longer until I can get up easier. Sometimes that will give me more energy to get things done. But sometimes, no matter how much I rest, I just don’t have the energy needed to do all that is required of me for that day. If that is the case, I have some choices to make. Do I delegate some things, do I let some things go, or do I continue through my day and hope that I can make it through it all and that tomorrow will be better?

All of this takes a toll, not just on my body, but on my emotions as well. On days when I have to push through and don’t have the energy to do that, I know that I am borrowing spoons from tomorrow and maybe another day, so I know I will be unable to do as much or anything at all, and that takes a toll emotionally, making me feel depressed. It’s hard all around to live with an invisible illness.

The Spoonie Community

It’s difficult to explain to family and friends what this is like, but there is a whole community of us out there who get it. Just looking on Instagram and Facebook alone, I have found many who I now count in my spoonie community. These people understand what it’s like to live with a chronic illness, even if it’s not the same as mine, and they are so welcoming and supportive through it all. If you are a spoonie or know someone who is and you are looking to understand it more, feel free to join us online and find your support system. Here are a few spoonie communities that you can join:

Facebook Groups:

1. Ankylosing Spondylitis for Women
2. Living with Ankylosing Spondylitis
3. Spouses of Chronic Illness Support Group

Instagram Hashtags:

1. #invisibleillness
2. #theinvisibleillnessclub (my hashtag)
3. #chronicillnessawareness
4. #chronicpain
5. #fibromyalgia
6. #spoonie
7. #spoonielife
8. #spooniesupport
9. any hashtag for the illness you have

Other:

1. If you are into VR, here is a VR support group
2. Here is a list of chronic illness support groups run by The Mighty

As you can see there are many places to get into community with those who suffer from chronic illness.

Conclusion:

Living with a chronic illness can be like navigating life with a limited number of spoons. Some days, you wake up feeling ready to tackle your tasks. But other days, even the simplest activities can drain those precious spoons. It’s a constant balancing act, a daily decision of how to spend your energy.

The good news is, you don’t have to go it alone. The spoonie community is a haven of understanding and support. Here, you’ll find others who know the struggle of measuring spoons and the frustration of good days followed by bad. Whether you connect online or in person, this community can be a lifeline, offering empathy, encouragement, and practical tips for managing your limited spoons.

So, if you’re a spoonie, reach out. Find your tribe. And remember, even on days when your spoons seem scarce, there’s a whole community cheering you on. You are strong, capable, and never alone.

BONUS!!!

Some of my favorite products regarding spoonie life:

1. My Spoons Are in the Dishwasher Enamel Pin
2. Spend Me Wisely Spoonie Keychain
3. Spoonie-corns Need Naps TShirt