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
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.
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