The Spoon Theory for EDS Patients
A chronic disease such as Ehlers-Danlos syndrome (EDS) can make activities of daily life more challenging. Friends and family members may not always understand what it is like for you to live with EDS. The spoon theory can be a helpful metaphor to explain it to them.
What is the spoon theory?
The spoon theory was conceived by Christine Miserandino, a lupus patient, who wanted to describe to her friend what it was like to live with the chronic disease.
According to the theory, you have 12 spoons per day. Each activity that you perform requires a certain number of spoons. Some activities such as brushing teeth or getting dressed might only use one spoon. However, it could take more spoons to do other things such as preparing and eating a meal or traveling to work.
In the end, there are only a set number of spoons or energy available to you each day. You can go past the set number of spoons in a day. But then, you will be pulling them from the next day when you will start with fewer. This metaphor emphasizes that you have a limited amount of energy per day. So, you have to make choices as to which activities you are going to undertake.
How the spoon theory applies to EDS
EDS is a group of rare genetic diseases with varying symptoms, but all related to connective tissue disorders. Most patients with the disease have hypermobility of the joints, meaning joints can move past their normal limits. This can lead to instability of the joints and painful dislocations. Some forms of the disease also can lead to easily bruisable skin or bleeding problems.
The extra care taken not to injure yourself can make activities more taxing. Many EDS patients often have chronic regional or widespread pain that can cause trouble sleeping and lead to fatigue. All of these factors can lead to a reduced pool of energy — or number of spoons — for you.
Ways to reduce your ‘spoon usage’
Since every activity you perform in the day will cost you energy (spoons) it can be helpful to plan ahead or change the way you perform those tasks in order to reduce your spoon usage.
Planning your week and activities on a less-hectic day can help reduce energy spent on those upcoming tasks.
By deciding what to wear ahead of time, for instance, putting on clothes will be faster and leave you more energy for more important tasks in the day.
You can do the same for meals. Planning the meals, and maybe even preparing them ahead of time, will help when you come home at the end of the day and are very low on energy. Setting up a slow cooker earlier in the day when you have more spoons also can help for when you are running low on energy at the end of the day. Using delivery services can reduce your spoon usage significantly. Having someone else prepare meals or do your shopping and then deliver it, can help, too.
It may be helpful to change the way in which you perform tasks. You can, for example, add a stool or chair to activities such as cooking, brushing teeth, and showering, as standing can use more energy. You also can break up tasks into smaller pieces, such as vacuuming your house one room at a time, in order to spread out your spoon usage.
Finally, it may be helpful, if your schedule allows it, to have a day per week set aside to rest, especially if you have been consistently borrowing spoons from the next day.
Last updated: Sept. 23, 2020
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