Understanding Life with Kidney Failure: Spoon Theory

In 2003, Christine Miserandino published an essay online that made an extraordinary attempt at explaining what it is like to live with an illness or disability to a person who does not have one. You can find the original post HERE.

“The Spoon Theory” became popular on chronic disease and autoimmune message boards, which is where I first came across it. I reference spoon theory often and think it’s important to teach it to others.

A Diner Conversation

The story starts with Christine (who has lupus) and her best friend having a conversation at a diner. Christine’s friend noticed her taking medications and wanted to know what it “felt like” to have lupus.

This was a friend who had watched Christine struggle with her health for many years, had seen her use assistive mobility devices, and had even attended appointments as a support person. At first, Christine was shocked by the question because she thought her friend already understood what her life was like—and she did, to some extent. But what she was really asking was: what does it feel like to actually be Christine? What does it feel like to “be sick” beyond the obvious trappings of pills, pain, and providers?

A Handful of Spoons

How could that possibly be explained to someone who has never experienced it? Christine searched for words, an analogy, something that would make sense. And then, she gathered spoons. Twelve spoons from the diner, to be exact. She then handed them to her friend like a bouquet, and said something like: “Here you go! Congratulations, you have Lupus!”

That was the beginning of Spoon Theory.

Spoons as Energy

Christine told her friend that the biggest difference between healthy people and sick people is having to make conscious daily choices about how to spend a very finite amount of energy. She used the spoons as a metaphor for units of energy.

A healthy and “energetic” person might seem like they have an infinite number of spoons and can go through their activities of daily living without worrying about running out.

But for someone with a chronic illness, disability, pain, or a mental health condition, spoons are not infinite. Christine had given her friend twelve spoons and explained that every single action costs spoons. Once a spoon has been used, it’s taken away, and gone for good. Her friend immediately requested more spoons—wouldn’t it be nice to just manifest more energy into existence when you need it?! Sure. But that isn’t how life works. As Christine told her, no one gets to pick how many spoons they’re given—only how they use them. When you have limited spoons, you must be very careful with them.

A Regular Day in Spoons

Christine asked her friend to walk her through a typical day. The first thing her friend mentioned was, “getting ready for work.” But Christine stopped her. No—the day doesn’t begin with getting ready. The day begins with waking up.

A healthy person can usually trust that when they open their eyes, they’ll feel rested and ready for a fresh new day. A sick person doesn’t get to have that trust and may routinely wake up already in pain or exhausted. That’s a spoon gone before the day has even started.

It takes another spoon to get out of bed, another to shower, another to eat breakfast, another to get dressed. By the time Christine’s friend was “ready for work,” half her spoons were gone—six out of twelve used up before the workday had even begun.

Running Out

From there, the day only got harder. Working costs spoons. Skipping lunch costs spoons. Commuting costs spoons. A healthy person doesn’t think about these daily drains because they don’t feel the losses. Spoons are easy to take for granted when they replenish quickly. But for someone who is sick, every loss is felt immediately and deeply.

I am terrible at math, but I can tell you that if you start with twelve spoons, each one represents 8.333% of your entire energy for the day. That’s a significant price. Christine explained that once spoons are gone, they don’t come back. Running out of spoons can mean collapsing from exhaustion or being hospitalized. You can sometimes borrow from tomorrow’s allotment, but that’s dangerous because it’s impossible to predict the future. You could overdo it and end up in a deficit that takes days to recover from. And if you catch something like a cold or the flu on top of everything else? Your spoon count drops even further, and the new illness itself costs even more spoons to fight. Also, spoons can be stolen out of nowhere.

Healthy people usually get a lesson in spoon theory when they get acutely sick and suddenly become aware of the limitations to their energy stores.

The Emotional Realization

By the time Christine’s friend had finished describing her workday, and was “back home” she was only had one spoon remaining. One spoon wasn’t enough to make dinner and do the dishes. One spoon wasn’t enough to go out to dinner and still be safe driving home. The only option was to reheat some soup—and good thing she wasn’t on a low-sodium diet at the time, right?

This was when Christine’s friend finally understood that living with a finite number of spoons is incredibly difficult. Some days are better than others and bring a few extra spoons, some days are worse and bring fewer, but the limitations are always there. A sick person learns to cope by being mindful of their spoons at all times, and managing how much energy they is remaining.

Her friend sat there with empty hands, feeling the weight of the metaphor. That’s when Christine pulled a spoon out of her back pocket and handed it over. Living with lupus for many years had taught her to be prepared, and to always keep one spare spoon in reserve for when it’s truly needed.

Living with Limited Spoons

Spoon Theory is a hard lesson for anyone who hasn’t lived it. When you have limited spoons, it takes more effort to function in the world, more forethought and planning for even the smallest activities, and more restraint in how energy is spent.

When someone with limited spoons says “I can’t,” it isn’t a cop-out. It’s an accepted reality.

Spoon Theory for Everyone

I wish more people used the language of Spoon Theory in their everyday lives. It’s a metaphor that works far beyond chronic illness.

Even Taylor Swift recently said: “You should think of your energy as if it’s expensive. As if it’s a luxury item. Not everyone can afford it.”

See? Spoon Theory applies to everyone.

A Final Note

Of course, no one really has an infinite number of spoons. The difference is that healthy people replenish theirs more easily. For example, making sourdough bread might “cost” two spoons, but eating something homemade and feeling proud of it might give you back four spoons. That’s a net gain—enough to do the dishes and, if you’re Taylor Swift, record your twelfth album.