I'm sure many of you have come across the term "spoonie" before, especially those with chronic illnesses. However, I'm sure most of you not affected think, "what the heck do spoons have to do with chronic illness?!"
Well thanks to The Spoon Theory created by Christina Miserandino of the blog But You Don't Look Sick, those of us who have to deal with autoimmune/chronic illness day in and day out have something to unite ourselves by. Ironically, she has lupus as well :) #lupusstrong
The purpose of her coming up with the spoon theory was to help a friend of hers understand the crippling fatigue and pain when a lupus flare takes over her body. As thankful as we are for our friends, we can't help but feel guilty when we have to take it slow and don't want to hold our healthy friends back. Many of us, myself included on multiple occasions, hear "but you look great, you must be feeling better!" I think this is one of the hardest parts of having an autoimmune disease like lupus; it is completely invisible, and it doesn't get better. As happy as I am to know that I look great and healthy, it is so incredibly frustrating when I have to explain why I can't keep up to pace from fatigue for no rhyme or reason, or when I have to lay around for a few hours due to a sudden onset of throbbing joints. I didn't choose this, and I want to be just like any other 20-something!
Getting back to the Spoon Theory story, Christine decided to grab the first thing she could find while in a restaurant, spoons! Every minor activity she proposed throughout the day, she told her friend to take away a spoon. By the middle-of-the-day activities, her friend realized there were no spoons left to take away. This is when it really hit her what it is like to live with lupus (or any other chronic illness). Christine counted things like waking up, taking a shower, picking out clothes/getting dressed, folding laundry, etc., as her spoons; which is a harsh reality. Those minor things throughout the day all add up and build up to this overwhelming fatigue. We end up literally dragging our body because our legs feel like they weigh 200 pounds each; we need to take a break and rest if we wish to continue with our day. These are things a healthy person won't even think twice about! Thus, "spoonie" was born.
I love my spoonie community online (especially Twitter), because we all come together using that hashtag to keep a conversation going to increase awareness. When I was diagnosed this past March, finding this community helped me feel like I was not alone in this wild adventure. This also isn't your typical support group; spoonies are some of the strongest, feisty, most inspiring people that I've come across, who want to use their experiences to make a difference in the lives of others. The term spoonie is not a negative connotation of someone who is ill and dull; it is someone who overcompensates every day to live their lives with even more positivity and promise as they may have prior to their diagnosis.
As a spoonie and a lupus patient, I appreciate every good day I am given. I want to make the most of those days to make a difference to propel my life forward as well as advocate for myself and other patients. As harsh as the reality of The Spoon Theory story is, I am thankful for it so that I have a base to give my family and friends of what I deal with almost daily. On another note, I am appreciative of my diagnosis (as crazy as it may sound), because it strengthens my faith and courage on a daily basis, so that I can strive to live the best life that I can every single day.
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