Most people don’t think twice about the energy it takes to shower, get dressed, and drive to work. Most people can go to the grocery store in the morning and make dinner in the evening. Most people can make plans and keep them.
When you have chronic disease, you’re not like most people. Multiple sclerosis (MS), autoimmune forms of arthritis, and many other conditions can cause extreme fatigue. On a bad day, you may not have the strength to even brush your teeth.
In a blog titled “The Spoon Theory,” Christine Miserandino describes how she showed her friend what it’s like to have lupus. (The autoimmune disease often causes fatigue, fever, and joint pain, among other symptoms.) While sitting at a diner, Miserandino handed her friend 12 spoons. These represented units of energy. She then asked her friend to describe the typical activities of a day.
Miserandino took away a spoon for every single task: showering, getting dressed with painful joints, standing on a train. Skipping lunch would cost a spoon, too. When the spoons were gone, it meant there was barely energy to do anything else.
This idea of quantifying energy as spoons, and the idea that people with chronic disease only get a handful of spoons each day, hit home with readers far and wide. “Spoon theory” is now part of the lingo of autoimmune disease. Legions of people call themselves “spoonies,” connect on social media as #spoonies, use spoon theory to explain their chronic disease limitations, and plan their days around the number of spoons they have when they wake up.
Speaking of Spoons
Amanda Thompson was working in a college registrar’s office when her symptoms first began. “My hair was falling out. I was out of breath walking up a flight of stairs. I was eating every carb in sight just to get energy. I could and would sleep 18 hours a day,” she says.
A doctor quickly diagnosed her at age 24 with underactive thyroid (hypothyroidism), which is when your thyroid gland can’t make enough of certain key hormones. Two years later she learned the root cause: Hashimoto’s disease, an autoimmune condition where your immune system attacks the thyroid gland.
Despite several treatments over the past 8 years, Thompson, who lives outside Atlanta, still struggles with fatigue. She uses the spoon metaphor to let her family know when energy is in short supply. “I’ll say I don’t have enough spoons for that, or I’m out of spoons,” she says.
Her advice to new spoonies: “Your support system is going to have to understand what’s happening to you. They need to know it’s not that you don’t want to do something when you’re out of spoons, it’s that you physically can’t.”
Just how many spoons does it take to perform basic tasks? It depends on the person, the day, and the disease.
Staci Stringer, a 32-year-old in Portland, OR, has rheumatoid arthritis. This inflammatory form of the disease causes her immune system to attack her joints and sometimes her organs.
Stringer figures she gets about 10 spoons a day, but she can’t plan in advance how she’ll use them. “Some days a shower takes all 10 of them and I have to go back to bed,” she says. “Sleep is the only way I get spoons back.”
Alicia Anderson, 43, says she has the most spoons when her disease is under control. Anderson was diagnosed in 2017 with psoriatic arthritis, an autoimmune disease that causes joint pain and other symptoms in some people who have psoriasis.
“In the beginning, showering took a spoon away and then I had to nap for an hour afterward,” the Atlanta resident says. Now that Anderson is on two disease-modifying drugs, “Showering doesn’t take a full spoon unless I’m having a flare.”
Other activities cost her several spoons even when she’s doing well. “Going to a store is a two-spoon event because of all the sensory input,” she says. “A doctor’s visit is easily two or three spoons, even if it’s an easy one.”
Talk to Your Doc About Spoons
Spoon theory may be well known to people with chronic illness, but there’s a good chance your doctor hasn’t heard of it. “I only learned about it when a patient was trying to help a loved one get a better sense of where they were [energy-wise],” says Johns Hopkins neurologist Scott Newsome, DO, who treats multiple sclerosis and a rare condition called stiff person syndrome.
Newsome uses a variety of analogies to talk about fatigue with patients. “I’ll use the visual of buckets of water, or ask how many batteries someone has in a day, or ask, ‘Where are you at with your gas tank?’” Newsome says. He thinks spoons can be used just as effectively, provided doctor and patient both know about spoon theory.
“It’s hard to quantify the hidden symptoms of MS, like fatigue. Using analogies and/or metaphors for symptoms that are difficult to quantity can help clinicians and patients’ loved ones get a better understanding of the impact of specific activities on a patient,” Newsome says. “If you tell me you have no spoons left or you’re out of buckets of water, I can work with you on creative ways of energy conservation.”