Has someone ever asked you what it feels like to live with a spondyloarthritic condition and you’re just at a loss for words?
Sometimes it feels like SpA is impossible to explain and people on the outside will never understand. Some say “if you know, you know” but in reality even those living with SpA have different experiences and feel different types of pain and sensations.
Explaining your daily experience using The Spoon Theory may be beneficial to help people around you understand your experience. The Spoon Theory is a metaphor that was created by Christine Miserandino, who used it to describe her lupus, and now it’s used by those living with chronic illness to provide a visual representation of how draining it can be to live with a chronic illness.
In this metaphor, spoons represent a unit of energy, mental or physical, available for daily tasks. Chronically ill people, termed as “spoonies,” use up these units of energy faster due to fatigue and other factors, and are consequently out of spoons earlier in the day than “healthy” people. For this reason, many spoonies have to plan out their day around the amount of energy they have, making sure not to use up all their spoons too quickly.
If your loved ones are having a hard time understanding this, you can physically take out a dozen spoons on the table; remove 1 if you didn’t sleep well last night, forgot to take your meds or skipped a meal and take away 4 spoons if you’re flaring. Say you only have 7 spoons left, how are you going to use them? Things like going to school/ work or grocery shopping uses 4 spoons, making a meal uses 3, bathing or styling your hair takes 2 spoons… How long will it take you to be out of spoons?
If you’re looking for another way to get the message across, we asked people living with SpA what metaphors they use to describe their symptoms. Feel free to use them for yourself or adapt them to your experience.
Create your own!
We’ve even created a blank one for you to fill out and share on social media! Right Click on the image and select “Save Image As” or click on the below to download and add your own text!
Blank Image – Facebook
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