(Authors Note: While writing for the odyssey, I've tried to avoid the topic of chronic illness. 9 articles in and I hadn't even mentioned it once. Now that I'm slowly crawling out of my chronic illness, I want nothing to do with it. I don't want to talk about it unless I have to, I don't want to go to any more goddam clinics, and I certainly don't want to spend hours googling miracle alternative therapies. But I'm writing this now because I realized that's selfish. My experience growing up as a sick teen was awful, but talking to people about it and educating them on chronic illnesses can improve the lives of others that are spoonies like me, and raise awareness. So here we go. Time to talk about that dreaded subject, being a spoonie.)
What the hell is a spoonie?
Well, I'm glad you asked. Not many people know what it means, some people who are spoonies may not even know that they are one. In a nutshell, a spoonie is someone who deals with a chronic illness. This most commonly refers to young adults and teenagers dealing with life altering but non life threatening prolonged physical illnesses. IBS, Chron's, Elhers Danlos, adolescent arthritis, migraines, and dysautonomia/ POTS(my personal demon) come up the most when looking into spoonie blogs and forums but it can apply to anything from a bit of asthma to life threatening cancer.
The term comes from something called "spoon theory" which you can read about here.
Even in 1st world countries like the united states, awareness and knowledge of these chronic illnesses is severely lacking, even among doctors. I had to wait three months after my symptoms first showed up to get diagnosed and thats considered an extremely quick time compared to most spoonies, and that was just because a pediatritian i met with happened to have another patient with POTS. Having a chronic illness is awful, but feeling horribly ill for a prolonged period of time and not knowing what on earth is going on with your body is even worse and extremely stressful and scary.
In a series of articles in the following months, I will dive deeply into what it means to be a spoonie including awareness, public perspective, mental health, physical toll, social toll, and much more. I'll be writing primarily about that middle tier of chronic illnesses, the ones that are life altering but not life threatening, since my chronic illness falls into that category I know the most about it.
Its important to talk about our struggles, if not for ourselves then for the people around us that could benefit from our stories.
