People with invisible disabilities often think their friends and families misunderstand the effect their illnesses have on their daily lives. Because they look fine and sometimes can function to their full abilities, other people do not recognize that pain, fatigue and other symptoms limit their ability to do what they want or need to do. They do not realize that each day, people with these illnesses make choices. Since they cannot do everything, they must choose each task carefully.
Fatigue is a particularly debilitating symptom. It is a common symptom of many chronic diseases such as lupus, Addison’s disease, fibromyalgia, arthritis and multiple sclerosis. When people look fine, how do they help their friends and family appreciate how debilitating their fatigue is?
Christine Miserandino faced this issue following a diagnosis of lupus. While eating with a friend, Christine’s friend asked several questions about how lupus affected her. Initially, these questions puzzled Christine because she assumed her friend understood lupus. Christine’s friend was her college roommate and often accompanied Christine to doctor’s appointments. Then, Christine realized that her friend did not understand how lupus affected her.
This conversation between Christine and her friend led to the spoon theory. As Christine attempted to make her friend understand what life was like with lupus, she looked around the diner and grabbed some spoons. Christine gave her friend 12 spoons. Each spoon represented an amount of a person’s daily energy. Then she asked her friend about her typical day. As Christine’s friend, started to describe her day, Christine explained that each task or activity cost a spoon. Therefore, Christine took away a spoon for showering, getting dressed and making breakfast. Before her friend had hypothetically left the house for work, half her spoons were gone.
Christine told her friend to plan the rest of her day with just the six remaining spoons. Again, Christine took away spoons for different activities including working on a computer and standing on a train. As evening set in, only one spoon remained. With just one spoon, she had to choose between making dinner or going out to eat. Christine explained that if she made dinner, she would not have the energy to wash up afterwards. Christine added that if her friend went out to eat, she might not have the energy to drive home. At the end of the day, Christine saw her friend get upset. She knew her friend understood, at least a little bit, what life was like with a chronic illness.
People with chronic illnesses never know what the next day will bring. They must think about each task they need or want to do. Because their energy is limited, they can only do a certain number of things. They have a limited number of spoons.
Simple things others take for granted must be analyzed and prioritized. For example, they may have to choose between showering or running errands. Planning things with friends or family is hard because they do not know how they will feel on the day of event. Many people with chronic illnesses use the spoon theory to illustrate what their day-to-day lives are like. It helps them teach their friends and families about their limitations. To read the full story of the spoon theory, go to Christine’s website or watch her video.
This article was first published on Examiner.com.