I am a Spoonie Living with an Invisible Disease


I first heard about the “Spoon Theory” when I was an inpatient at MHNI. The story is about a woman living with Lupus, and her friend trying to understand a day in the life of living with her disease. If you are interested in reading, and I hope that you will, please click this link: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/. The full web site link is: “But You Don’t Look Sick”, http://www.butyoudontlooksick.com/.

Here is an excerpt from the “Spoon Theory”:

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

We went through the exercise at MHNI, just as the story reads, and discussed how many spoons it would “cost” us to perform each function. This varies on a day to day basis when dealing with chronic pain and illness. Some days it is easy to get your day started and go through the motions. Perhaps you can get out of bed, make breakfast and go to work, and this doesn’t “cost” you any spoons, and you may feel that your cup is running over! On the flip side, there are days that you find that you have “spent” all of your spoons before you even pry yourself out of bed. The intent is to ensure that you never run out of spoons, and that you spend your spoons wisely.

I love everything about this story and what it represents. There are so many invisible diseases, and I think the picture below truly illustrates what it is like to deal with this day in and day out. Masking your disease; being an actor to hide the pain so that you can appear “normal” in the eyes of others.

now you see me

At the end of “The Spoon Theory”, the author closes with:

I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

I have spent one of my spoons in writing this blog post and sharing with all of you, but I think it was worth it if I can reach just one person and help them or their loved ones understand!

Some more “Spoonie” love and inspiration from: www.butyoudon’tlooksick.com:

It is simple really.  Spoonie means family. It means no judgements, nothing but love, experience, tips, laughter, help and hope for those of us who live each day as if it is our last…day by day… minute by minute…… spoon by spoon.   By helping each other, we help ourselves because no one should feel alone. The person we help encourage today may be our lifeline tomorrow.     We work together for more awareness. We work together as a family…. because to be blunt, until you know how it feels… you just don’t know.  Spoonies are all about making choices. The choices that feel right to them, when the moment is right, when it is worth it.    How many spoons do you have today? 


One response to “I am a Spoonie Living with an Invisible Disease

  1. […] I am a Spoonie Living with an Invisible Disease. […]

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