The Spoon Theory and Fabry Disease

The Spoon Theory and Fabry Disease
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Fabry disease can lead to problems at home, school, work, and everyday life. The disorder affects your whole body and can cause intense bouts of pain, a skin rash, and progressive loss of vision, hearing, and kidney functions. Your journey can be overwhelming and difficult to explain.

A metaphor called the spoon theory can help family and friends understand what you go through regularly.

What is the spoon theory?

A lupus patient, Christine Miserandino, conceived the spoon theory to explain to an inquiring friend what living with a chronic disease was like.

According to the theory, you start each day with 12 spoons. You have to give up one spoon for each task you perform: brushing your teeth, dressing, visiting the doctor, making dinner, etc. When you’ve gone through all your spoons, that’s it.

Healthy people usually have all the energy necessary to do whatever they need to do in a day. In other words, they have a seemingly infinite spoon supply.

The spoon theory underscores that those with a chronic disease have a finite amount of energy that they must carefully ration. Opting to perform an errand or task limits what you can do for the rest of your day.

How does the spoon theory apply to Fabry disease?

Fabry disease is a rare genetic disorder that prevents the body from making enough functional alpha-galactosidase A. This is an enzyme that is responsible for breaking down globotriaosylceramide (Gb3 or GL-3), a type of fat molecule, into building blocks that the body’s cells can use.

When the body cannot efficiently break down these fat molecules, they build up inside cells and cause damage. The disorder has a wide range of symptoms, including life-threatening ones such as kidney disease, heart attack, and stroke. But because symptom management allows you to be somewhat active, those closest to you sometimes discount or overlook Fabry’s toll on your life.

Putting the theory into practice

Understanding that you have only so much energy renders daily prioritizing and planning crucial. Show yourself compassion if you don’t complete everything you set out to do. Remember, when you’ve spent all your energy, you are done with your day.

It’s vital that you practice self-care. If part of that means “using a spoon” for, say, a rejuvenating walk around a park in lieu of a small but potentially tiring get-together, then so be it. You know your body best.

Once you’ve explained the spoon theory, your friends and loved ones should be able to better understand your needs. And, when you exhaust your spoon set, don’t shy from asking for help.

 

Last updated: May 22, 2020

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Fabry Disease 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. 

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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