By Jorie –
“Acceptance doesn’t mean resignation; it means understanding something IS what it IS and that there’s got to be a way through it.” – Michael J. Fox
Last weekend I decided to dust off my old Instagram account that had been long forgotten. When I first started on Instagram, I mostly posted mundane things. I still post pretty mundane things, but after I’d been using the app for a while I discovered a group of people who call themselves “spoonies.”
I had no clue what this meant at the time, but I noticed immediately that I could relate closely to these individuals on a personal level. So what is a spoonie?
A spoonie, in layman’s terms, is someone who lives with a chronic or invisible illness. The diagnosis itself doesn’t matter; what does matter is that this community of individuals can come together to support one another. We vent, we cry, we laugh, we share treatment info, and we make wonderful friendships. Essentially, we just understand each other on a level that most healthy people aren’t able to comprehend. You don’t “get it” until you “get it.”
The spoonie community all started with what is known as “the spoon theory.” The concept was coined by Christine Miserandino, a self-proclaimed spoonie with Lupus and author of the blog “But You Don’t Look Sick?” Here’s a short excerpt of her story about how the spoon theory came to be:
“If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons […] I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. […] 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.”
(Click here to read Christine Miserandino’s full Spoon Theory story.)
To explain a bit better, here’s a handy graphic to explain how we “use” our spoons:
(Image via http://www.dysautonomiainternational.org)
While the examples in the graphic can be a little of an exaggeration for me at times, the concept still rings true. My energy is depleted much quicker than someone without my health issues. I am triggered by many small things in life, things others take for granted, which means I must slow down, be self-aware, and also sometimes avoid certain situations because I know I will end up sick.
The realization that I have an invisible reserve of “spoons” when I wake up in the morning is a daunting thought, but I am able to work around it and figure out what I can and can’t do. I have to. It can be difficult at times, but people like me have to learn to navigate the most routine, minute parts of life in order to have a good quality of life, and even more so to avoid the consequences of overdoing it.
Part of the “spoon” issue comes into play when I’m just getting up and planning my day. Will I be outdoors for any length of time? Do I know when I’ll be able to eat? Is there a way for me to step away if I need time to recover? What triggers might I be exposed to?
These questions aren’t always easily answered, and sometimes I do have to live outside my routine, especially if I’ve planned a weekend outing or a vacation. My daily life, though, is managed pretty well because I have a set routine. I know, I know. You’re thinking, “but what is life if you have to settle for a constant routine?”
Well, frankly, that routine gives me a real quality of life. I go to bed and wake up at almost the same time every day, even on weekends (give or take an hour). I eat at just about the same time every day. In the summer, I don’t go outside much because I can’t let myself get overheated or stay in sunlight too long. The list goes on and on…
(Image via http://www.mollysfund.org)
After learning about the spoon theory and meeting others in the online spoonie community, I thought it was a great opportunity to not only have my story heard, but to help advocate for my own health issues. That’s where not only Instagram comes into play, but this blog and website too.
But it took me a long time to get here, to what I am writing right now. I was embarrassed for a very long time; I thought no one would care to read about someone with health issues. That’s boring, right? And I was even more upset when I saw that some of my fellow spoonies on Instagram were actually trying to make it a competition. Yes, they were battling over who had it worse. There’s always going to be drama, but it really perturbed me. After that, I left Instagram and focused on other things, pushing the topic of chronic illness awareness out of my mind.
Something kept knocking in the back of my mind, though. Why would I let two people online, strangers nonetheless, get me down about sharing my health journey with others? Why would I allow them to block me from all the connections I can make and support I can receive from other spoonies? Besides—they did nothing to me personally. I was only taken aback at their actions and it motivated me to stop investing in chronic illness awareness.
That’s why, after I spoke with another spoonie friend of mine last week, I decided to hop back on Instagram and share my story as if I had never left. I am not ashamed of my limitations. In fact, I take pride in the fact that I am able to do as much as I do with an upbeat, positive, and mindful attitude. I know that I have it much better than others, but I also don’t undermine my own pain and illnesses. It’s not a competition, and it never was. “Comparison is the thief of joy,” said Theodore Roosevelt, and he was totally right!
Being a spoonie means embracing others with chronic or invisible illnesses, not shunning them and especially not trying to one-up them. We’re in this together, and I’m so happy to have made spoonie friends along the way who understand and can easily empathize with my health struggles. These guys know what it’s like to live your life walking on glass, but they all do it with a smile on their face and such grace that you’d never know. Thank you, spoonie community, for welcoming me back.
Feel free to follow my day-to-day health journey on Instagram @jories.story.
And to all my spoonie friends reading, this is for you: