In Which I Am a Person

January 15, 2016

For a long time, my identity online has not included the fact that I'm a spoonie. (As a very-related side note, please read the spoon theory. It may change your life. Thanks to the spoon theory, we chronically ill people fondly refer to ourselves as "spoonies.") Online, I will occasionally mention that I have fibromyalgia and PCOS, and it's not a secret, per se. But I haven't talked a lot about it.

The reason for this is that, honestly, the online world is my escape. Ever since I can remember, whenever I'd feel sick or lonely or crappy in any way, I would turn to the internet. There, I didn't have a faulty human body to hold me back. There, I felt free. (This is also probably why I'm a writer and why I loved to read as a kid.)

So, whenever I've tried to write about chronic illness, it's been hard. It feels like my personal space is invaded by the crappy feelings of fibromyalgia, or a headache, or whatever I'm facing that day. It's not always like that--some days, I do want to proudly claim the badge of "spoonie." But some days I want to forget I'm sick at all.

The part that wants to forget has often won out. I've kept the internet as a safe haven, which is good. It's helped me. It's been what I needed. But in the back of my mind, there has always been that drive that says, I need to make sure I don't feel alone and that others don't feel alone. I need to write. I need to meet people with chronic illness. I need to connect.

Even though I've tried so hard to keep "spoonie" out of my online persona, new things are happening. I've slowly started claiming that title in my Twitter bio and other places. My perspective on being a spoonie changed... because when you start to meet other spoonies, you start to realize something: being a spoonie is pretty darn cool.

I have tried to write about being a spoonie. Back in 2012, I created a short-lived blog called "Spill the Beans." It was amazing, but I had a hard time keeping up with it. I had a hard time being honest. I had a hard time writing about my struggles. So the blog quickly died. But it's always been in the back of my mind. I always wanted to restart it someday.

Then, I got an email about a Google Domains promotion where I could basically get a domain for free. A domain for Spill the Beans wasn't available. My dad threw out the term "Young and Sick," and on a whim, I just ran with it.

I have no idea what this blog is. I have no idea what I'm doing. But I do know that I'm claiming "spoonie" in my online persona. It's not a badge of shame. It's a badge of honor.

There may still be days where it's hard for me, I don't doubt that. But what I hope remains clear throughout this experience is that yes, I am a spoonie. But I am also a person. I am a spoonie-person. I am both all at once. Just because I'm chronically ill doesn't mean that that is what defines my life. I am a writer. I am an editor. I love deeply. I love stories. I'm a fangirl who can't even handle the feels some days. I'm also secretly Tina Belcher.

There are so many facets to me, including chronic illness. I'm a spoonie, but I am also a person. I'm a spoonie-person.

And I am okay with that.

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  1. I have never heard of the term spoonie! :O THANK YOU for sharing that article. I That so put being chronically sick into words! It HAS changed my life. I'm so glad you shared that!

    I've been the same way as you, not exactly keeping my health problems secret but not being open about them either. You put into words exactly how I feel. The internet is my happy place, my escape, yes. Sometimes it's nice having a place to be "normal" and not worry about my health. But then I think...would I want it to change? Yes, I'd LOVE to feel well, but I also have learned so, so much from my health and gotten so closer to God. I don't think I'd WANT to be anything different. My health problems have shaped and formed me closer to what God wants me to be. I am still a person, as you said, but I'm also a STRONGER person BECAUSE of my health.

    You inspire me, Sky! I want to be braver, more open and accepting of what I am. We are spoonie-people, and that's okay. Beautiful even.

    1. Ahhh, I'm so glad. When I read the spoon theory, it changed my life too. I'm really glad I could help share it with another person!

      I agree. That's a really good point and something that I may need to write about sometime--without my health problems, I really WOULD be a different person. And I do believe it has made me stronger.

      Thank you so much! I'm sending you love as you go through the journey of being open and honest. I couldn't agree more. Being a spoonie IS okay... and it definitely is beautiful, too. Love you, fellow spoonie-person. ♥