For healthy people, navigating the day doesn’t take much planning other than determining the order of things. Lunch first or grocery shopping, they might wonder. Either way, it doesn’t matter and both will get done on most days. And if choosing is required, it’s usually not for lack of energy.
But for the five million people with fibromyalgia who live with near constant pain and fatigue, energy becomes a precious resource and daily life tasks must be prioritized because there simply isn’t enough for everything.
The fibromyalgia spoon theory explains how people with chronic illnesses ration energy
The fibromyalgia spoon theory was developed by a woman named Christine Miserandino who has lupus. Lupus is an autoimmune disease that is closely related to fibromyalgia, a disorder involving widespread pain, fatigue, and trouble sleeping, among other symptoms.
The two syndromes are so closely related that doctors frequently have difficulty distinguishing between them, according to Arthritis Today. In any case, the fatigue associated with the disorders makes completing basic life tasks difficult.
The fibromyalgia spoon theory goes something like this: A person starts the day with a certain number of spoons. Each spoon represents a burst of energy. Showering in the morning might require a spoon. Getting dressed is another spoon.
Miserandino wrote about this theory, recalling her meeting with a friend in a diner. The friend wondered what living with lupus was like—not from a physical perspective, but from a psychological one. What does it feel like on the inside, the friend wondered.
Miserandino serendipitously thought of the spoon theory, which has since spawned the term “spoonie” to describe fibromyalgia warriors, while trying to help her friend understand the rigors of living with a chronic illness.
On a whim, Miserandino grabbed a dozen spoons in sight and handed them to her friend. “Here, you have lupus,” she told the friend. The friend counted the spoons, realized she had 12, and jokingly asked if she could have extra.
“No,” Miserandino told her, suddenly realizing that she has hit upon a good way of explaining the unexplainable—what it’s like on a psychological level to evaluate your day, every day, and know that you do not have the energy for everything.
Miserandino and her friend went through the day. Showering? That’s a spoon. But wait, Miserandino says, the implications of chronic illness begin even before you rise. She describes:
“You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine, you might as well give up all your spoons for today and tomorrow too.”
Getting dressed cost another spoon, but Miserandino tells her friend about the decisions that go into getting dressed. If a particular part of the body hurts, or is bruised from the disease, that influences the day’s outfit choice.
Already down multiple spoons and not even out of the house yet, the friend began to understand that not all the day’s desired activities would be completed. Miserandino writes:
“The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”
The fibromyalgia spoon theory continues to dinner. While a healthy person has an array of choices for dinner, a person experiencing pain, fatigue, or nausea from a chronic condition must approach mealtimes a little differently. With one spoon left, Miserandino explains:
“If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then, I also explained that I didn’t even bother to add into this game that she was so nauseous that cooking was probably out of the question.”
Life at a slower pace is a key for living with chronic illness
Learning to slow down is the hardest thing Miserandino says she’s had to learn. Learning to feel left out, be okay with saying no, and prioritizing so the most important activities get done early enough in the day when there’s still spoons available—these are the things people without chronic illnesses can’t understand but the fibromyalgia spoon theory helps explain.
People with fibromyalgia must manage pain, fatigue, and other symptoms while attempting to live a full life, but unfortunately, most people find their lives changed in one or more aspects.
A survey conducted by the American Pain Foundation and National Fibromyalgia Association found these symptoms impact everything from relationships to parenting to important life decisions.
The results were compiled from online questionnaires answered by more than 2,550 people with fibromyalgia and hundreds more with other chronic pain conditions.
Fibromyalgia symptoms influenced people’s decisions to have children because patients feared about their ability to take care of a child or go through the experience of childbirth. Meanwhile, 95% of respondents with children under the age of 18 said pain made parenting difficult because it diminished their ability to enjoy highlights in their children’s lives and shepherd kids to school, events, and social activities.
Nearly all of those who responded said they altered their daily routine to simplify it or make it easier, similar to Miserandino’s fibromyalgia spoon theory.
Nearly 70% said fibromyalgia impacted their ability to take care of relatives.
Another study, commissioned by health news site HealthyWomen, found that 85% of patients with fibromyalgia consider the disease a burden on their lives, and 64% are concerned their condition is not taken seriously enough. Nearly half of survey respondents reported stunted careers while 67% said keeping up with household chores was no longer an option.
Other impacts included the ability to spend time with friends and family and lessened intimacy with partners.
How has fibromyalgia impacted your daily life?
Image by Nicki Mannix via Flickr