Spoon Theory: How It Helps Spoonies Cope

By Kristen Domonell

It can be hard to feel understood when you’re living with an invisible illness. How do you explain to your friends, family and coworkers that you’re not being lazy or melodramatic, you just literally can’t get out of bed today? As a college student with lupus, Christine Miserandino struggled with that very question. What started as a conversation with a friend in a diner has evolved into a concept famous in the online chronic illness community called the “spoon theory,” published on Miserandino’s blog in 2003. So what do spoons have to do with being sick? And how might the concept help you cope? Here, four “spoonies” share how the idea has helped them better understand what they’re going through, share how they’re feeling with their loved ones and form bonds with people who get it.

What Is Spoon Theory?

One night, when Miserandino was out to dinner, her best friend asked her to try to explain what it felt like to be sick. She gathered all the spoons from her table and nearby tables, and explained that each little daily habit or chore, from washing your hair to getting dressed, costs a spoon, as she dropped them one by one. Most young people start their day with unlimited spoons and the energy to do whatever they want, she writes. But when you’re sick, you start your day with a limited number of spoons, and they can quickly become all used up before you’ve even made it out the door. If you use up more spoons than you have, you might pay for it the next day. “When your ‘spoons’ are gone, they are gone,” she writes. “Sometimes you can borrow against tomorrow’s ‘spoons,’ but just think how hard tomorrow will be with less ‘spoons.’”

“How Spoon Theory Helps Me Cope”

Over the years, the theory has taken off, and “spoonies” have become a group of thousands of young people sharing and connecting over shared experiences on social media. (More than half a million photos have been tagged with #spoonie on Instagram.) We asked four spoonies to share what this community, and spoon theory, means to them.

“Last year, when I discovered the concept of the spoon theory, it felt like I was being given words for something I’d never been able to express. Identifying as a spoonie has given me words to explain to myself, and others, why I live a more limited life, and has allowed me to connect with so many like-minded and similarly-restricted people.

It’s honestly AMAZING to be a part of the spoonie community on social media. When you’re struggling with chronic illnesses, there are so many times you can feel all alone and isolated, like no one understands what you’re going through, and it’s easy to spiral into a place of frustration and despair from there. Having a way to connect with other people who are experiencing so many of the same issues is invaluable. It reminds you that you aren’t alone. My fellow spoonies often inspire me to be stronger, as I see them enduring pain and hardship, and still finding moments of joy and peace. It’s also so valuable to have the spoonie community to reach out to when I have medical questions about treatment.” — Kayla Adams, 27, British Columbia, CA

“The part of the spoon theory that most resonates with me is the way it depicts the control that it can feel like your illness is holding in your life. The planning that takes over your life when you have an illness and the amount of control your illness has over the planning, or the “spoons,” certainly speaks to me. How much walking can I really tolerate on this trip? Will there be bathroom access? How often? What time will this take place? Can I really stand not to eat until 3 p.m. so I don’t have a flare up? If I don’t eat, how weak will that make me? Although that seems overwhelming, the spoon theory is in fact empowering, as it reminds me that I may not have control over the amount of spoons I am working with, but I do have control over how I choose to use the ones I have. It’s not the hand you’re dealt, but how you play it.

I have met some great people, some of whom I actually am very close friends with and it’s such a unique bond. Having someone say that they understand what you are going through, and knowing they truly do, is something every spoonie should have. Also, it’s great to toss questions about experiences with medications, doctors, symptoms, etc. For spoonies of Crohn’s disease in particular, my spoonie friends and I make plenty of poop jokes and keep each other laughing!” — Tricia Seaver, 26, Bristol, Connecticut

“[Spoon theory] resonates with me because it is a label which helps me identify other people going through a chronic illness. To me, it has a direct correlation with, “birds of a feather!” By simply saying, “I’m a spoonie,” only the VIPs in life will have any clue what that means. I instantly relate to, and easily connect with, people who have all types of diseases and labels with just this one word. On social media I put it out there in the first few words that I’m a spoonie with MS. By doing this, people reach out and connect with and are more likely to accept my invitation. The support I give is to have positive mental health and give education on that. Our entire physical body is a direct outer reflection of our inner thoughts. What we think, we create. Having a healthy mental state has proven to produce astronomical results.” — Lucas Robak, 29, Milwaukee, Wisconsin

“Having something to formulate an almost tangible concept for chronic pain and chronic illness is really important for me. Before having the spoon theory, I often found it very hard to explain to people how I was feeling, and often ended up spreading myself too thin because I wasn’t understanding my pain as much as I could. It’s always empowering to know that when I share my experiences with my chronic pain disorder I will be given a thumbs up, or an encouraging word or two, or even suggestions and help when dealing with anxiety around the issue. This year was one of my first years dealing with doctors quite often, and was very new to me. Having friends who were spoonies allowed me to share with them and receive encouragement that I just wouldn’t get from able bodied people. We are social beings (even if some of us are introverts). We yearn for belonging and acceptance, and to have a group of people who understand you on a level so many others don’t really means something quite powerful.” — Katie Scarlett, 22, Toronto, Ontario, CA

Article originally published May 16, 2016 on Chronicality.com