The #Spoonie Community

The term "spoonie" comes from the the Spoon Theory, an analogy created by Christine Misanderino to explain what it's like to be chronically ill. Christine Misanderino is an award winning writer, blogger, speaker, and lupus patient advocate who has had an immeasurable impact on the chronically ill, or spoonie community. In creating https://butyoudontlooksick.com, Christine Misanderino created a much needed forum for people with chronic illnesses to communicate and share resources.

At the beginning of my chronic illness journey, doctors were not very understanding or knowledgeable about my illness. So, I turned to the internet and social media to learn more about it. What I found was invaluable. Because of connecting with the spoonie, or chronic illness community on social media, I was able to learn more about my illness, learn how to advocate for myself, and find friends who were dealing with similar struggles. After discovering that I may have Ehlers-Danlos Syndrome, or EDS, I found the spoonie community through Twitter. This was over five years ago, so I don’t remember exactly what I searched to discover it. But, I am so thankful that I did though.

About five years ago, I met my friend, Katelyn Waszak, on Twitter. As a teenager in the digital age, I’d been warned of stranger danger and internet safety. But, the potential of connecting with people who also had EDS was too valuable to pass up. So, I got to know her slowly and carefully. Before I knew it, we were closer than some of the friends I had made in “real life.” A couple of years older than me, Katelyn was almost like my big sister in the spoonie community. While our friendship was founded on us both having EDS, we connected on a personal level as well, becoming part of each other’s support systems. Katelyn became someone who I could vent to about anything, health related or otherwise. She understood what I was going through, and gave me advice and comfort that others were sometimes not able to give. She also helped introduce me to other spoonies with similar illnesses, and resources that had been helpful for her in dealing with her EDS as a young adult.

Before I connected with the spoonie community and found friends and resources on Twitter, Instagram, and Facebook, I felt as if I was going through my illness alone. I did not know anyone else who was experiencing what I was, nor did I have concrete explanations to what I was experiencing. Having the opportunity to meet and learn from other spoonies gave me a sense of comfort and hope that was necessary in my moving forward with my illness. Once I learned that I was not alone in my struggle, I knew then that I was not “crazy,” and that I had tools to help me deal with my illness, and a community to fall back on when those tools did not work.

In this podcast, I interview my friend Katelyn about her experiences being chronically ill, especially as a young adult. We also talk about what the spoonie community means to us, and how it has helped us in our chronic illness journeys.