Day 2 – “I have measured out my life with coffee spoons.” –T.S. Eliot
Today, I am grateful for the experience of being diagnosed with a chronic illness. No, I’m not being sarcastic J Without it, I wouldn’t have learned so much more about how strong I am – how I handle the curve balls life throws my way, and how I can grow closer to those who mean the most to me. And I found an amazing online community willing to share their stories and experiences…and to validate your feelings when you feel like you’re going crazy.
On this date last year I was officially diagnosed with stage IV endometriosis, and in an effort to deal with this I sought support from folks who had experience with this sort of thing. Family & friends have been amazing through this process, but we all know how it helps (most of the time) to hear from people who have gone through the same experience. I stumbled onto the Spoonie community through sites like Tumblr and Instagram, and I was hesitant to jump in. Most of the folks I saw sharing their stories were diagnosed with lupus, fibromyalgia, Ehlers-Danlos Syndrome, and even cancer. Who the heck was I to label myself a Spoonie when all I had was endo?
What is a Spoonie? Basically, anyone with any form of chronic ailment which causes them to measure their life in the amount of energy they have on any given day…the energy measurement just happens to be in spoons. It’s about budgeting and keeping your symptoms in check – and paying close attention to what your body and mind are telling you. (Read this for the origin story of the Spoon Theory – http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ )
It turns out that the Spoonie community is very welcoming and open, and the majority of folks won’t judge you based on your condition. To them, an invisible chronic illness is the only identifier you need to consider yourself a Spoonie. Depression? Spoonie. Chronic migraines? Spoonie, RA, fibro, Ehlers-Danlos, Lupus? Spoonie. Spoonie. Spoonie. The biggest thing the Spoonie community taught me is that you cannot compare your illness to someone else. And even within the diagnosed illness, no two cases are the same. My stage IV endo may not exhibit the same symptoms and levels of pain as someone else with stage IV. And just because I may not have as much pain as the next person, doesn’t make my illness any less important…and for that I am grateful!