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When Life Gives You Chronic Illness, Make 'Spoonie' Friends

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The first time I heard the phrase “spoonie,” I was confused. The concept of comparing energy supply to spoons was completely foreign to me. But after reading Christine Miserandino’s “Spoon Theory,” I fell in love with the concept.

I could never put words to the exhaustion that engulfs your life with chronic pain. I can still be a spunky teenager, but only in small doses. Going to a simple lunch with friends can completely drain me to the point where I only have a small energy source left. Now I define that in spoons. I figure out my day according to how exhausted I am when I wake up (ironic, right?) and budget spoons accordingly. Never in my life did I expect to be met with this dilemma, let alone a community of people just like me.

In the first few months of being sick, I felt utterly alone. I not only fell ill, which is hard enough, but I have to deal with the halls of high school. Being sick so young, people often have not lived life long enough to understand chronic illness. They see a girl who is injured one day and find the next, so they assume she is faking. I don’t blame them for making these assumptions, but it can really make a person feel alone. You begin to realize there is no one else who understands what you are going through.

I began to join online support groups for my conditions. I was utterly shocked by the joy, intellect and support I was met with by these people. I felt like an orphan learning she has a family of a million people. I was timid to post at first, but I decided to just go for it one day and post a question. I received numerous thoughtful responses that made me feel heard. I could ask them so many questions about how to function with my condition that doctors never could answer. I learned the secrets to driving with chronic pain and dislocations, how to tape joints, and hundreds of other tips and tricks. Then I decided to put it all out there and post a video of myself signing a song. In response, I received support, friend requests and requests to share the video. I remember tears of joy forming as I read a message from a fellow teenage girl who lived in a surrounding state going through the same thing as me. This girl has turned into someone I can come to with any medical or overall life concern.

I have since formed so many irreplaceable spoonie friendships. They are honestly the most trusting, understanding people I have ever met. We exchange advice, encouragement, and chat off and on throughout the week. I know that no matter what health crisis arises, they will be there. These are the people who believe every symptom I name without a doubt and never become overwhelmed by my body falling apart.

I never expected to form such irreplaceable bonds when I became sick. My world was overwhelmed by pain, new symptoms and sadness this January, but my illness has turned out to be such a positive part of my life. I would of course trade a healthy life for what I have gained from my illness, but it would be a trade to make with a heavy heart. I am so thankful to have formed bonds I know will pass any obstacle thrown at them. I do have some phenomenal friends who go above and beyond to make my life easier (you know who you are), but these people don’t understand me the way spoonies will, and I don’t expect them to.

No one ever speaks of this hidden world of chronically ill superstars, but I’m so glad to have had the gate opened to me. The most important thing I can stress to someone recently diagnosed with a chronic illness is that they aren’t alone. When given chronic illness, make spoonie friends.

Image via Thinkstock Images

Originally published: August 8, 2016
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