Finding the right words to put living with lupus in perspective can be difficult. Spoon Theory to the rescue!
In 2003, Christine Miserandino created The Spoon Theory to explain what life is like for someone living with chronic illness. One evening, Miserandino, who has lupus, was at a diner with a friend. Her friend asked what it was like to live with lupus. She did not ask about specific symptoms or the drugs that were needed – just what was it like to be chronically sick. Miserandino was initially at a loss, but then she noticed spoons at the table and elsewhere around the diner. That is when she came up with an incredibly simple and powerful metaphor … spoons! She explained that lupus gives you a limited amount of energy each day – and this energy can be thought of as a certain number of spoons. She handed her friend some spoons and then described what it was like to go through each day knowing that, with every activity, spoons would be taken away from her.
As she physically took spoons away while describing normal activities, Miserandino’s friend began to realize the nature of dealing with chronic illness. She, as someone who didn’t have a chronic illness, may have so many spoons that she never has to worry about whether or not there will be enough for the day, much less have to plan for tomorrow. By the end of the evening, Miserandino felt understood, and her friend gained new compassion and perspective.
From this intimate conversation between good friends, the Spoon Theory was born!
A spoonie is someone who lives with a chronic disease like lupus and only has so many spoons to use each day. For a spoonie, routine tasks like taking a shower or walking the dog can be exhausting and cost a lot of spoons. A spoonie may only have enough spoons one day to get dressed and get the kids off to school and nothing else, especially if they know, they’ll need spoons the following day for a medical appointment.
Identifying as a spoonie is a way for those living with chronic illness to feel connected. A spoonie can find solidarity with other spoonies who understand what it’s like living with chronic illness. Spoonies always have someone to turn to when they need support from someone who truly understands what it is like to feel fatigued, in constant pain, or constantly worried.
While you can’t change the fact that you have a chronic disease, you can change how you approach life. As Miserandino explains, being a spoonie means slowing down – often way down – and remembering to put yourself first. Living a full life with chronic illness means cultivating patience and self-awareness. It means not pushing yourself too hard or setting unrealistic goals and expectations. It means not feeling shame or guilt for having to turn down social invitations or to get adequate rest. Life as a spoonie means showing yourself the compassion you would show someone else you love and care about. You wouldn’t make a friend or family member feel ashamed about something they have no control over, and you should treat yourself with the same kindness and concern.
Spoonies are often more accepting of their situation and are more mindful about how they live life. It can mean, not taking things for granted and being more appreciative of what each day holds, even if that looks different from life before chronic illness. Life as a spoonie means not beating yourself up, even if you can’t accomplish what you set out to do that day. It means living with a greater sense of intentionality. Navigating life as a spoonie may look a little different, but that may not be such a bad thing!
Learning how to allocate and prioritize spoons can take time. It takes self-awareness and self-control, but once a spoonie has mastered the craft, Spoon Theory can become an invaluable tool for managing a life with chronic illness and to communicate that life to others.
But you don’t look sick. (n.d.). https://butyoudontlooksick.com/
Miserandino, C. (2010, December 15). The Spoon Theory written by and spoken by Christine Miserandino [Video]. YouTube. https://www.youtube.com/watch?v=jn5IBsm49Rk
Author: Liz Heintz
Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.
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