Spoonies: an emerging online community of wonderfully unique individuals living with chronic illness.
Well, it’s about time that I covered the topic of what a “Spoonie” is, considering the name of this blog site Planting Spoons references this term. I am excited to share with you the background story, the raison d’être of an online community
The whole story dates back to an experience that Christine Miserandino had with a friend at a restaurant. Christine lives with an autoimmune condition called Lupus. Sitting at a table facing her friend, Christine used 12 spoons to portray the amount of energy that she might have on any given day, and how each activity or event used up a spoon (or multiple spoons). Something as seemingly minute as taking a shower or brushing teeth could use up a spoon of energy. It was a simple, genius metaphor to describe her life with autoimmune disease and chronic illness to her friend, who at first could not understand why Christine was struggling.
So, what is a Spoonie?
Simply put, a Spoonie refers to someone who suffers from a chronic illness. Oftentimes, the illness looks invisible to the outside world, but not always. The illness or disability may be apparent, or entirely unseen most of the time. Sometimes, someone with chronic illness might be out of commission for a period of time, and others might not realize what that person is experiencing. I know this first-hand, as a Spoonie with multiple chronic illnesses.
And the experience of chronic illness is not limited to physical manifestations, but often extend to our mental health as well. It takes a lot to manage life with an illness and/or disability. It takes a lot to live and present a sort of normalcy to others, be it loved ones, employers or society in general. Living with chronic illness or disability can feel incredibly isolating and oftentimes frightening, and I myself have felt lonely, scared and misunderstood in my own experiences with chronic illness.
That’s where the Spoonie community comes in. I think the term Spoonie is a friendly name for an online community that promotes inclusivity and friendliness, accepting everyone’s unique abilities and disabilities. Sometimes our stories are hard and tragic, other times filled with disappointment or frustration. And I can’t forget also how much Spoonies use humour, sometimes a twisted, wicked sense of humour only fitting for those living with chronic conditions and having spent far too much time interacting with medical institutions.
Cue the camaraderie
Most of all, I appreciate how supportive Spoonies are to their fellow companions. Responses that radiate encouragement, empathy, understanding and any emotions expressed by the individual posting their experience are mirrored by other Spoonies lending their shoulder for support. True warriors.
This wonderful community is what inspired me to create this website. It’s to give thanks to you all for your unconditional love as I go through my own challenges, and it’s to return the favour by providing what I hope to be interesting, genuine and informative material in the form of blog posts. It’s not much, but I enjoy writing and researching, and so I hope you’ll enjoy reading it and then leave my site feeling inspired. My intention is to give back to my Spoonie Sisters while you simultaneously hold me up on your shoulders, cheering me on.
Thank you thank you thank you, my fellow Spoonie friend. 🙂
P.S. I wanted to link Christine Miserandino’s spoon theory blog post from her website But You Don’t Look Sick, but for some reason I cannot access the website (maybe it was deleted). Here is her Instagram page, instead.
