The Spoon Theory Demonstration is designed to be a short and simple text-based role playing game/demonstration for people who are not disabled to get a small glimpse into the life of a person living with a chronic illness. The game shouldn’t take more than five minutes. Feel free to play around, start over, and choose different options. For an explanation of the Spoon Theory, please go to the FAQ page.
When you play this demonstration, please remember that this is not fiction! Disabled people face these situations on a daily basis. It’s important to remember everyone’s situation varies and not all people will experience any or all of these, but at the same time, these stories are examples of real-life experiences.
Context: This is an example of life as a chronically disabled college student. This situation can easily be applied to someone with a career, or other life situation. This game is a brief example of one day. A person who is chronically disabled only has a limited amount of expendable energy each day. The spoon theory uses a metaphor of spoons to turn energy into a measurable concept. For the sake of simplicity, you will start your day with 20 spoons, or 20 measures of energy. Depending on the tasks you choose, the amount of spoons you have will go up or down.
Enter the demonstration!
I’m finally beginning to think that there may be something to The Spoon Theory. If you don’t know what the Spoon Theory is, I highly suggest reading about it. So many people in the chronic illness community herald it as the best explanation for what they go through with their illnesses and often refer to themselves as “Spoonies”.
For a while I have been very hesitant in describing myself as a spoonie and indulging in the comments and posts that usually involve statements like “I ran out of spoons today” or “Praying for extra spoons”. I think now that this may be due to a form of denial and anger at my illness. In my denial and anger, I refused to play a part in anything to do with the spoon theory. I struggled to believe that taking a shower, getting dressed, taking a walk, or any other normal daily activities could cost me a spoon. It was ridiculous that such simple things could detract so much from my energy as to make me sick. Slowly, I am realizing the truth in the theory however.
Taking a shower does exhaust me. 99% of the time I end up on the shower floor, struggling to turn the water to cold or flopping helplessly against the door in an effort to escape the hot suffocating environment. Often, during these times, I’m losing sight and feeling nauseous and already half way to fainting before I give in and slide down the wall. Getting dressed can also be difficult. At my worse, I have had to sit down in order to put pants on because I could not support myself on one leg. There’s something incredibly humiliating about having to sit down to put on your pajamas while sharing a dorm room with someone. All these things take effort and stamina and a functional working body. Without those things, the activities get slightly more difficult.
I came to this realization one night when I returned home from a meal exhausted and physically sick. Spending my time more often than not curled in a ball waiting for the pain and nausea to subside. This was particularly painful for me since I clearly remembered at dinner thinking to myself “hey, I can eat this! I’m finally on the mend!” Apparently not. I realized that night that I did too much. I stretched myself too thin and I was suffering the consequences. In fact, that has been my biggest lesson last semester. I have limits. Those limits are somewhat more restrictive than what is “normal” and if I don’t obey those limits, I WILL pay for it. Whether through an ER trip or through some horrifying new presentation of my body’s instability and weakness. Believe me, this is a HARD lesson to learn in your 20s.
I guess, now, I measure my days in spoons. Thankfully, tonight, I have a few extra 🙂