The Spoonie revolution was created by the owner of ButYouDontLookSick.com, Christin Miserando. Christin was diagnosed many years ago with Lupus, an autoimmune disease and known as an invisible disease. There are hundreds of different diseases that fit in the ‘invisible’ disease category, and there are so many people worldwide affected by them. Christin, like many of us with an invisible disease, got tired of constantly hearing the words, “But you don’t look sick”, and with that her site was created, so that those suffering could come and find support.
As someone suffering from an invisible disease, you get frustrated by these words, because yes, we may not look sick. But looks can be very deceiving. We are battling an inner fight with pain, fatigue, and a whole world of different symptoms. But, to those who do not live with one of these diseases, trying to explain what we live with becomes impossible. The fact that we ‘look’ healthy makes people assume that we are just lazy or that everything is all in our head. But what they don’t realize is that everything we do can no longer be taken for granted; we must plan ahead and use the energy we have after careful consideration, or face consequences.
Ok, so I am sure you are still asking, “So why the spoons?” The answer to that question is Christin’s Spoon Theory. Christin, one day while out with a friend, was asked the question what it was really like to live with Lupus. Thinking of the best way to explain to her friend, the Spoon Theory was born. Basically, what the Spoon Theory shows is that as someone with an invisible illness, we begin each day with a certain amount of spoons. Now, depending on if we are in the midst of a flare or are taking medications that make us sick, that starting amount of spoons may change. Christin used these starting spoons to show her friend that this is what she has at the start of a day, but that with everything we do, even simple things like getting dressed, takes away a spoon. So, with a limited amount of spoons to work with, we have to carefully plan how those spoons will be used.
I found Christin’s site not long after I was diagnosed with RA (though that diagnosis has changed over the years), and have shared it many times with friends to help them understand what I live with. I have yet to be able to find any better way to describe my life and how different it is now. I consider myself a “Spoonie” and always will.