Disclaimer*** Before you read on, it is important to note that this blog post and theory, in NO WAY approves or promotes any type of abuse or harm done to others or yourself. This blog is here to help those, who have hard days remembering who they are, because of pain and fatigue, feel validated. If you or someone you love are in an abusive situation, or are in a mentally compromised place, please reach out for help.***
I remember the day I first read The Spoon Theory, by Christine Miserandino. It helped me so much, to explain to others the effects that my disorder, disease and syndromes had on me. It also gave me a point of reference, that was simple to understand, with others. Explaining your chronic battles can take a lot of energy, so I for one am incredibly grateful to Christine for putting her theory into words. I encourage you to click on the link to her blog above, to learn more about the theory, if you are not familiar with it. It's a wonderful read!
My name for my business, The Spork Witch, came about because of the Spoon Theory. Without that theory, who knows what my business name would be! Maybe the hardworking momma who becomes a fire breathing dragon? I mean I always have that for a back up name, I guess!
Sporks are used to reference the mood of a Spoonie who has run out of spoons. Spoons are essentially the battery, or energy, for a Spoonie. For each task done, small or large, a spoon is "used". Think of it like a video game life line. You only have a certain amount of energy and when it runs out, typically you would die in the video game, but sadly what is left for Spoonies, are the Sporks. I can only speak to my experience, but I hope another Spoonie, or a loved one of a Spoonie can find some answers and validation in this blog.
Sporks are usually accompanied by pain and exhaustion. They are the slip of a temper, the raising of the voice, a random outburst, sensory overload, or the snappy comment towards anyone within proximity. Sadly, the Sporks can sometimes hurt those we love the most and I do not know one Spoonie who is proud when that happens. Sporks may not be deemed positive at first, but by admitting the Sporks exist within us and by being more transparent of them inching closer, we can start to use them to be an empowering and healing tool. After all, if we can learn to use the Sporks to our advantage, in healthy ways, then we help all those we love AND gain control back.
However, none of us are perfect and there isn't a person reading this blog post that can lie and say they haven't faced hard moments. Before you judge, remember that if you were walking around with, lets say the equivalent of your leg half sawed off, you probably would have some issues being Mary Friggin Sunshine constantly. Even non-Spoonies can admit that they are guilty of being snappy or saying something they didn't mean!
Any Spoonie knows, that when you are constantly holding yourself together, literally and figuratively, it can be hard to be the person you want to be. Many of us have to work very hard at not resenting our own bodies and our own lack of control over pain. We constantly berate ourselves mentally for not "holding it together", or "not doing enough", when we really don't give ourselves enough credit for surviving moment by moment and day by day. Most of us are in so much pain that "normal" IS pain. This is very hard to understand, when you only experience pain on a by accidental basis. Our brains are wired to forget pain after we experience it, to help our bodies cope and move forward. However, when you are in a state of constant pain, your "normal" is never truly who you want to be.
I believe that Sporks come about because society has made it very clear for those of us who are chronic sufferers of anything, (especially in any country that is capitalism based), that if you aren't productive, you aren't worthy. Rest is wasting time and smashing in as much work in a day is positive. We are taught to "pull ourselves up by the bootstraps in a dog eat dog world", That survival of the fittest is the name of the game. With the current economic set up, it literally is overly work, or starve sadly. Therefore when pain or exhaustion overrides our real personality, or ability to function as we see others do, we blame ourselves. After all, if we can't do it, who will help us? Who will say "It's ok that your pain flared up! Let us help you with your bills and house work!". That's not how most societies are built.
Truth is, us Spoonies are doing our absolute best to not use the Sporks we have in our pockets. We push through so much, we don't really get the option of ever feeling what pain free feels like. There are so many times that I've been out in public, when all I have left are Sporks and a random person asks me why I need to use a cane. In my head I am straight up mentally stabbing this person, with one of my figurative Sporks (kinda like that scene in Mean Girls, when they attack each other as if they were in a jungle, but it's really just a day dream) and sadly that thought process translates on my face. Its like RBF, but you're aware of it and can't stop it from happening. Just getting through the day is so exhausting, that doing anything in public, or even at home, can be so draining, the fire breathing dragon comes out and we can't control it.
It's hard to form relationships and close bonds when you're a Spoonie. People who don't take the time to truly understand the mood swings, anxiety, flakiness, protective triggers and trauma, either become abusers of the chronically ill, or leave our lives quickly. This can create more trauma than most of us care to admit. Truth is, we beat ourselves up every time we snap.
Every time we have to cancel plans we were looking forward to. Every time we tell our children, "NOT NOW!" in a manner that we promised we never would. Every time we forget a loved ones birthday, or special occasion because the brain fog is so real, or every time we don't have the energy and patience for those that we love. We tend to hate our Sporks and blame ourselves for using them.
It's time to change that. It's time to use the Sporks to gain control back. It's time for it to be safe to say things like "I'm sorry, I can't, my energy is running out and I'm overwhelmed.". We cannot change others, but we can position ourselves to stand up for what is healthy for us. It's time to normalize the existence of a Spork and how it not just effects the Spoonie, but those around them. We must allow a Spoonie to say "Sorry, I can't.", so that the Sporks can be use for surges of raw empowerment. To recognize the existence of fatigue and pain is to allow those who are suffering from it, to have a safer place to fully embrace life. To have a job that works with what they can offer, so they CAN be more productive. To honor each other and where we are at, so we can work together as a community. Most importantly, to also not jump to a conclusion of assuming a Spoonie is angry or agitated directly at a certain person. Chances are it's the pain and fatigue talking. It's very hard to be logical and balanced when you're struggling with any pain.
The one thing I think all Spoonies are angriest about, is our lack of control over our own bodies and minds. We want to be contributing and fully integrated members of society. We want to play with our kids, go to that concert and eat all that food. We don't want to be labeled as high maintenance, emotional or dramatic. So it's time for us to stand up and ask the world, to collectively have more compassion and be less quick to judge anyone who may not be reacting the way you think they should.
We never know what others battle on a daily basis. Anyone who battles ANY chronic physical, mental or emotional condition is a Spoonie. Given today's society and it's lack of over all empathy, much of the population could be considered a Spoonie. Therefore, there is enough of us to help each other support our Sporks. Try to see things from the Spoonies point of view, see that they are suffering to help themselves, let alone come across as graceful and together. Be supportive and kind, as much as you can be and chances are, the first lower pain moment that the Spoonie experiences, they will make it up to you and practice their healthy coping skills even more. To give grace to a Spoonie allows them to gain more control of how their Sporks are used. Instead of using them as daggers, we can then start to use them as arrows, to hit our goals in the bullseye and accomplish what we can. Spoonies are people who have so much to offer, we just have to allow all of us to go at the pace we are capable of and not at the pace set by an unrealistic standard of society.
Let's make it safer for anyone struggling to take care of themselves and then we can support our own Sporks better. It all has to start somewhere. Keep maintaining.
About the author:
I was born with Elhers Danlos Syndrome, which means I was born with faulty connective tissue. Everything in your body is held together by connective tissue, so you can imagine the damage that is done to those of us who have this disorder, on a minute to minute basis. I also have a disease and syndromes on top of this, which my disorder set me up for. Someone with EDS can go through many different scary, debilitating and painful experiences in their lives. Since EDS is a rare disorder, there is no cure and not many answers for those of us dealing with this. I encourage you to research more about the disorder, at The Ehlers Danlos Society