The Spoon Theory for Angelman Syndrome Caregivers

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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Caring for a child with a chronic disease like Angelman syndrome can be challenging and exhausting. Parents and caregivers often feel rundown and tired, to an extent that’s hard for others to understand.

One analogy that can help friends and family members in grasping the strain you are living under is the spoon theory.

What is the spoon theory?

The spoon theory is an analogy first developed by a person with lupus, Christine Miserandino. She used this analogy to explain to a friend what living with a chronic illness was like.

According to the spoon theory, you start the day with 12 spoons. You have to give up one spoon for each task you perform: each meeting with friends, each errand ran, etc. When the spoons are gone, that’s it.

Healthy people or people not caring for a child with a chronic disease like Angelman syndrome have all the energy necessary to do whatever they need to do in a given day, or an unlimited supply of spoons.

People touched by chronic illnesses don’t.

The spoon theory illustrates that people with a chronic disease and their caretakers have a limited store of energy that must be spent carefully. Choosing to perform one errand or task limits what you can do with the rest of your day — like not having time to rest and recharge while caring for your child.

How can the spoon theory help?

Knowing that you have limited energy makes it essential to prioritize the things you have to do each day. Be compassionate with yourself if you only get to the most important. When you are out of energy, you’re done for the day.

Don’t feel that all of your energy must be spent on caring for others. It’s important that you practice self-care, too.

Ask for help when you need it; reasonable requests like this do not make you weak or lazy.

 

Last updated: Nov. 10, 2019

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Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.