No online discussion of a chronic condition would be complete without including the spoon theory. The spoon theory is widely shared on the internet, probably because so many people can relate to it. It was written by Christine Miserandino of butyoudontlooksick.com. She is a woman with Lupus, but her words apply to many chronic conditions. From our perspective, this explanation applies very well to chronic pain and the associated fatigue.
We may not do it justice if we try to summarize it, so before you read any further, please read the original spoon theory explanation here or have a listen to the author here. This theory creates a common language for people in pain and their supporters to understand the impact of pain and fatigue on everyday life. Please take a moment to review it, then don't forget to come back and read our perspective.
Basically spoon theory is about having a limited amount of energy and endurance, and having to make hard choices every day about how to use it. Think back to the last time you felt under the weather, things like getting dressed and cooking seemed extra hard. With a chronic condition everything takes more energy. On top of this pain takes energy, so it’s a double hit. Things you didn't even have to think about before having a chronic condition, become very effortful. Even “simple” things like having a shower or visiting with a friend can take up a huge percentage of your daily energy. Before having a chronic condition, you may have been able to go about your day knowing that even if you were tired, you would have enough energy to get through everything. With a chronic condition, life becomes a giant balancing act. You have to juggle your basic needs and responsibilities with others’ expectations and activities you would like to do. This juggling act often includes multiple days at the same time. Questions such as: “If I go out today with a friend, while I be able to go grocery shopping tomorrow?” or “if I shower now, will I have enough energy to get ready after?” become a constant thought.
Spoon theory is a way of taking an abstract thought (such as "I need to decide wisely where I spend my energy”) and making it concrete so people can understand. It helps explain the concept to people who have never had to make hard decisions about daily tasks. Activities cost “spoons” and one has to decide how their going to spend their spoons for the day. If loved ones read and understand this, it can help simplify communication. Instead of having to say "I can't do that right now" (which might feel like you're letting them down), you can simply say "I don't have enough spoons for that."
To put spoon theory into occupational therapy terms, it's all about pacing and energy conservation. It's about respecting yourself and your body enough to realize you don't have an endless supply of "spoons," and that's okay. You can plan your activities throughout the day to maximize your use of the "spoons" you have (pacing). You can also think about the way you do tasks, to reduce the amount of "spoons" they take (energy conservation).
The ideas behind this spoon theory has helped both of us begin to reclaim our lives. The great thing about spoon theory is it helps you understand that you are not completely powerless. By understanding how much energy things cost, you can use it to help stop the cycle of pushing and crashing. You can learn ways to lower the cost of activities and develop strategies that will give you more spoons. Choices can be made about how to spend your resources. You can learn to recognize how many spoons you have available on a given day and how the cost of activities changes from day to day. You can borrow spoons from following days or save spoons from previous days. You can decide what tasks are the most important and what tasks would be a bonus.
For example, consider a man with fibromyalgia, who wanted to spend a day at the zoo with his wife and young children. He knew the zoo could be an exhausting and over-stimulating place to be with children, even for someone without a chronic condition. For him, the zoo could be a near impossible venture because of his pain and fatigue. But because of his understanding of pacing and energy conservation (spoon theory), he was able to not only go, but enjoy the day. He and his wife used every strategy they had to plan this day to be successful. They planned the zoo trip for a Monday, but kept Tuesday as a back-up plan in case of unforeseen circumstances like weather changes or a flare-up of symptoms. They also planned for the next day to be a rest day, so he could recover. That Sunday, he rested and saved his spoons. When Monday came, he (fortunately) felt up to the trip. He rented a scooter at the zoo to reduce the number of spoons he would need. He and his wife had no expectation of seeing every exhibit, and just decided they would enjoy the day and see what they could. When he needed a break, his wife took the kids on a ride and he rested. After the trip, he and his wife both knew he had used his spoons, and respected his body’s need for recovery. She took over the childcare and supported him in getting the rest he needed.
Understanding spoon theory doesn’t 100% guarantee success. Both the man and his wife were aware of the risk of a flare up. But by using the strategies they’ve developed they were able to set the stage for an enjoyable day. They had learned not to take the simple pleasures of life for granted, and they were both grateful that they were able to experience a memorable family outing.
One common feeling that can come with pain or any chronic condition is a sense of powerlessness. By using strategies to maximize your spoons and being patient with what you have, you regain some sense of control. Through this process, you can respect your body’s needs without letting pain make all the decisions. We hope this helps you create the freedom needed to do what matters most.
References:
We may not do it justice if we try to summarize it, so before you read any further, please read the original spoon theory explanation here or have a listen to the author here. This theory creates a common language for people in pain and their supporters to understand the impact of pain and fatigue on everyday life. Please take a moment to review it, then don't forget to come back and read our perspective.
Basically spoon theory is about having a limited amount of energy and endurance, and having to make hard choices every day about how to use it. Think back to the last time you felt under the weather, things like getting dressed and cooking seemed extra hard. With a chronic condition everything takes more energy. On top of this pain takes energy, so it’s a double hit. Things you didn't even have to think about before having a chronic condition, become very effortful. Even “simple” things like having a shower or visiting with a friend can take up a huge percentage of your daily energy. Before having a chronic condition, you may have been able to go about your day knowing that even if you were tired, you would have enough energy to get through everything. With a chronic condition, life becomes a giant balancing act. You have to juggle your basic needs and responsibilities with others’ expectations and activities you would like to do. This juggling act often includes multiple days at the same time. Questions such as: “If I go out today with a friend, while I be able to go grocery shopping tomorrow?” or “if I shower now, will I have enough energy to get ready after?” become a constant thought.
Spoon theory is a way of taking an abstract thought (such as "I need to decide wisely where I spend my energy”) and making it concrete so people can understand. It helps explain the concept to people who have never had to make hard decisions about daily tasks. Activities cost “spoons” and one has to decide how their going to spend their spoons for the day. If loved ones read and understand this, it can help simplify communication. Instead of having to say "I can't do that right now" (which might feel like you're letting them down), you can simply say "I don't have enough spoons for that."
To put spoon theory into occupational therapy terms, it's all about pacing and energy conservation. It's about respecting yourself and your body enough to realize you don't have an endless supply of "spoons," and that's okay. You can plan your activities throughout the day to maximize your use of the "spoons" you have (pacing). You can also think about the way you do tasks, to reduce the amount of "spoons" they take (energy conservation).
The ideas behind this spoon theory has helped both of us begin to reclaim our lives. The great thing about spoon theory is it helps you understand that you are not completely powerless. By understanding how much energy things cost, you can use it to help stop the cycle of pushing and crashing. You can learn ways to lower the cost of activities and develop strategies that will give you more spoons. Choices can be made about how to spend your resources. You can learn to recognize how many spoons you have available on a given day and how the cost of activities changes from day to day. You can borrow spoons from following days or save spoons from previous days. You can decide what tasks are the most important and what tasks would be a bonus.
For example, consider a man with fibromyalgia, who wanted to spend a day at the zoo with his wife and young children. He knew the zoo could be an exhausting and over-stimulating place to be with children, even for someone without a chronic condition. For him, the zoo could be a near impossible venture because of his pain and fatigue. But because of his understanding of pacing and energy conservation (spoon theory), he was able to not only go, but enjoy the day. He and his wife used every strategy they had to plan this day to be successful. They planned the zoo trip for a Monday, but kept Tuesday as a back-up plan in case of unforeseen circumstances like weather changes or a flare-up of symptoms. They also planned for the next day to be a rest day, so he could recover. That Sunday, he rested and saved his spoons. When Monday came, he (fortunately) felt up to the trip. He rented a scooter at the zoo to reduce the number of spoons he would need. He and his wife had no expectation of seeing every exhibit, and just decided they would enjoy the day and see what they could. When he needed a break, his wife took the kids on a ride and he rested. After the trip, he and his wife both knew he had used his spoons, and respected his body’s need for recovery. She took over the childcare and supported him in getting the rest he needed.
Understanding spoon theory doesn’t 100% guarantee success. Both the man and his wife were aware of the risk of a flare up. But by using the strategies they’ve developed they were able to set the stage for an enjoyable day. They had learned not to take the simple pleasures of life for granted, and they were both grateful that they were able to experience a memorable family outing.
One common feeling that can come with pain or any chronic condition is a sense of powerlessness. By using strategies to maximize your spoons and being patient with what you have, you regain some sense of control. Through this process, you can respect your body’s needs without letting pain make all the decisions. We hope this helps you create the freedom needed to do what matters most.
Acknowledgements:
Graphic designed using Tagxedo
at http://www.tagxedo.com/
References:
Miserandino, C. (2003). The
Spoon Theory. Retrieved from http://www.butyoudontlooksick.com on August
21, 2015.
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