Chronic illness can be debilitating in many ways, more so than just the physical symptoms that often accompany it. More often than not guilt is always looming with a chronic illness. Whether it’s because you have to cancel plans (again), can’t complete all of the work you wanted for a given day, or need extra help because you don’t have the energy to take care of yourself all on your own.
Unfortunately, for those without chronic illnesses it can be difficult to imagine what someone means when they explain their illness, especially when many of us look what others consider “normal.” If you’ve never dealt with chronic illness yourself, you can only imagine what it must be like from your own experiences. This can be frustrating for those with chronic illness, because when others don’t understand what you’re dealing with, guilt can creep in and make you feel like you’re a burden and perhaps even angry with those around you, because you don’t know how to make others understand what you’re living with.
Christine Miserandino created the spoon theory to explain to her friend what it is like to live with Lupus. Lupus is an autoimmune disease that causes the immune system to attack the body’s own tissues.
Miserandino was at lunch with her friend when she asked her what it was like to be sick. Miserandino struggled with how to answer, as many who deal with chronic illness do when asked what it’s like to be sick. She grabbed a handful of spoons and explained to her friend that each spoon represents units of energy that you have when you wake up everyday. For those with chronic illnesses, energy can be extremely limited and the amount you have can vary widely from day to day.
Miserandino explained that for healthy people you never expect to run out of spoons, but for those with chronic illnesses you know you only have so many everyday, and unfortunately, most of the time you don’t have enough spoons to get done everything that needs to be completed in a given day. For those with chronic illness, she explained, you have to ration your spoons so you can complete the most important tasks of the day. Miserandino walked her friend through her typical day, and her friend realized that Miserandino usually runs out of spoons before she can do everything she wants to in a day. This helped the friend to better understand the limited energy that Miserandino has, and how she has to carefully choose what to use her energy on every single day.
The spoon theory became popular among the chronic illness community after Miserandino vocalized it, eventually leading to those in the community identifying as “spoonies”, because of this theory. It was the first time many in the community felt that they could explain what it was like to deal with limited energy every day, and help those close to them to understand their conditions better.
I encourage you to read the full story on Miserandino’s blog, because chances are you know someone with a chronic illness, and you just might be able to better understand their struggles and perhaps gain more insight into how to help the spoonies in your life.