Being diagnosed with a genetic disease during adulthood can be a life-changing event. Between managing your symptoms and addressing the challenges that the disease poses to you and your family and friends, you may be overwhelmed both physically and emotionally.
A practice called the spoon theory may help you cope and also help those around you better understand your disease.
What is FAP?
Familial amyloid polyneuropathy (FAP) is a progressive multi-system disease characterized by abnormal deposits of amyloid fibers around peripheral nerves and other tissues. Its symptoms vary widely, but usually include numbness, postural hypotension (low blood pressure when stand up), and cardiac complications.
What is the spoon theory?
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 the spoons are gone, that’s it for the day.
Healthy people usually have all the energy required to do whatever they need on a given day. Unlike you, they have a seemingly infinite supply of spoons.
The spoon theory underscores that those with a chronic disease like FAP have a finite amount of energy that they must ration carefully. Choosing to perform an errand or task limits what you can do for the rest of the day.
How to apply the spoon theory?
Like many chronic diseases, FAP can lead to fatigue and weakness. Understanding that you have limited energy requires daily prioritizing and planning. Show yourself compassion if you do not complete everything you set out to do. When you’ve spent all your energy, your day is done.
It is important that you also practice self-care. If part of that means spending a spoon, for example, to make an excursion to a park for fresh air and relaxation, that’s okay. The better you feel mentally and physically, the more engaged you can be in life.
When you’ve exhausted your spoon set don’t hesitate to ask for help. After you’ve explained the spoon theory, your friends should better understand your needs.
If you want more support to help manage your FAP, check out some of these support groups and patient organizations.
Last updated: June 4, 2020
FAP News Today 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 providers 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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?