When I became chronically ill as a child, I couldn’t explain how different my energy levels were. Everyone around me could see it. I went from a happy, bubbly kid to one that was lethargic. When I said I was “tired,” though, people didn’t quite understand the extent of what I meant.

It wasn’t until I graduated college that I found a way to explain my fatigue better. It’s when I found out about the Spoon Theory.

What’s Spoon Theory?

The Spoon Theory”, a personal story by Christine Miserandino, is popular among many people dealing with chronic illness. It describes perfectly this idea of limited energy, using “spoons” as a unit of energy.

Miserandino lives with lupus, a chronic autoimmune disease which causes an immune system to attack the body’s healthy cells. One day, Miserandino writes, her friend wanted to understand better the realities of living with a chronic illness.

“As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? Miserandino writes.

“How do I explain every detail of every day being affected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.”

Sitting in a café, Miserandino goes on to explain how she gathered spoons and used them to represent finite units of energy. Energy, for many of us with chronic illness, is limited and depends on many factors including stress levels, how we’re sleeping, and pain. Miserandino then walked her friend through the friend’s normal day, taking spoons, or energy, away from the friend as the discussion went on. By the end of the day, her friend wasn’t able to do as much as she wanted. When she realized Miserandino went through this every single day, her friend started crying. She understood, then, how precious time was for people like Miserandino, and how few “spoons” she had the luxury of spending.

Identifying as a “Spoonie”

It’s unlikely Miserandino expected so many people to identify with Spoon Theory when she conceptualized it and wrote about it on her site, But You Don’t Look Sick. But until Spoon Theory, no one else had explained the trials of chronic illness so simply and, yet, so effectively. It’s been accepted across the world as this amazing tool to describe what life with illness is really like. The Spoon Theory has done some great things since its inception – one of which is providing a way for people to meet others dealing with illness. A quick search on social media will pull up hundreds of thousands of posts from people who identify as a “Spoonie.”

Dawn Gibson is one these people. In addition to currently being a caregiver for a family member, Dawn lives with spondylitis, food allergies, and learning difficulties. In 2013, she created #SpoonieChat, a Twitter chat held on Wednesday nights from 8 to 9:30 p.m. Eastern time, during which people ask questions and share their experiences as Spoonies. Gibson says the creation of Spoon Theory has opened up communication for those living with chronic illness and for those caring for them.

“The Spoon Theory offers a lingua franca for the Spoonie set,’ opening up a world of understanding among patients, between patients and those around them, and between patients and clinicians willing to listen,” Gibson says.

Managing life as a ‘Spoonie

For people like Gibson, who have Type A personalities and take on a lot of projects, life as a Spoonie isn’t always easy. She shares that using spoons as currency is great, “but the illness decides how many we have to spend. A “Spoonie” usually has fewer spoons to spend than things that need to be done.”

Outside of the medications and doctor appointments, our day-to-day lives can be limited and dictated by what our illnesses do to our bodies and minds. As someone with multiple chronic illnesses myself, I constantly use the concept of spoons as energy with family, friends, and others. When I’m having a rough day, I often express to my husband that I may not have the spoons to cook dinner or run errands. It isn’t always easy to admit, though, because it can mean missing out on things both of us really want to take part in.

The guilt associated with having a chronic illness is a heavy burden. One of the things that the Spoon Theory can help with is that separation between what we’d like to do and what our illnesses dictate.

Gibson touches upon this as well: “For me, the Spoon Theory’s highest value is that it allows me to understand myself. Our people often remind each other that we are not our diseases, and that’s true. But the Spoonie ethos allows me to make that separation intellectually. If my body decides that we can’t keep social plans I know that’s not me being flaky. There’s no help for it. That eases the heavy cultural burden to just gut it out or try harder.”

More resources for learn about and connect with Spoonies

While the Spoon Theory is meant to help outsiders understand what it’s like to live with illness, it helps patients in incredible ways, too. It gives us the ability to connect with others, express ourselves, and work on self-compassion.

If you’re interested in connecting more with Spoonies, there are some great ways to do so:

  • Download a free copy of “The
    Spoon Theory
    ” by Christine Miserandino in PDF format
  • Join #Spooniechat Wednesdays from 8 to 9:30 p.m.
    Eastern Time on Twitter
  • Search #spoonie on Facebook, Twitter,
    Instragram, and Tumblr
  • Connect with Dawn’s Spoonie
    community on Facebook
  • Explore #Spoonieproblems on social media, a
    somewhat lighthearted hashtag Spoonies use to talk about their unique
    experiences with chronic illness.

How has Spoon Theory helped you cope with or understand life with chronic illness better? Tell us below!

Kirsten Schultz is a writer from Wisconsin who challenges sexual and gender norms. Through her work as a chronic illness and disability activist, she has a reputation for tearing down barriers while mindfully causing constructive trouble. Kirsten recently founded Chronic Sex, which openly discusses how illness and disability affect our relationships with ourselves and others, including — you guessed it — sex! You can learn more about Kirsten and Chronic Sex at chronicsex.org.