Chronic Community

There’s not much good about being diagnosed with multiple chronic illnesses. In fact, this time two years ago, I would have been hard-pressed to find anything good about it at all. What changed in those two years, you ask? Did I become a masochist?

Hardly.

After my thyroid surgery, I was looking up stories of other patients. During my searches, I found out about The Spoon Theory, and people who identify with it. Becoming a “spoonie,” meaning someone who identified with The Spoon Theory, was a way to open up a whole community of people who actually understood what I was going through!

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Above is a prize I won in a spoonie giveaway. It’s a bumper sticker, shaped like a spoon, that says “Spoonie Pride.” Even better, it’s in the awareness colors for my most irritating illness, Ehlers Danlos!

Finding out about giveaways, shops, and businesses run by people who I could identify with was huge. Though I still felt lost after having to completely change my life plan due to progressive illnesses I had been struggling with since childhood, I saw sick people being normal! I saw sick people having fun! I saw sick people complaining about things that all my healthy friends and family just didn’t understand!

Although I don’t totally identify with The Spoon Theory, I think it’s really important. It’s important to have a support network. It’s important to see other people with your illness succeeding, or failing, or just living life. I generally refer to myself as a spoonie when I’m talking to other people who suffer from chronic pain and illness, because it’s way easier than listing out the ways I’m chronically ill and in pain.

As I head off to Vanderbilt Hospital today, in an attempt to finally get some real help for my Ehlers Danlos, POTS, and all the things that stem from them, I’m happy I found a community. Even if being sick sucks, all the friends I’ve made and all the support I’ve been given has been spectacular!

Hopefully I will get some answers and treatment today! Either way, I will be updating my blog with what went on at Vanderbilt!

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2 thoughts on “Chronic Community

  1. Sending you good vibes and I know something good will come from your trip today!

    And you’re right- the spoonie community is the best 🙂

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