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Why I'm Bringing My Chronic Pain Battle to Social Media

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I began the new year deciding that I would not let my illness control me anymore. Now, that is a lot easier said than done, of course, but I realized that one of the best ways of starting that task it to talk about it.

When I first started trying to cope with my illness in my day-to-day life, I tried to hide it. I tried to act like there was nothing wrong with me and that I didn’t think anything would be wrong with me. The problem with that is it is very lonely. I felt like there were very few people I could speak to about my illness, about the pain that haunts me every day.

I ended up trying to hide it from people who hadn’t seen me in a very long time. I didn’t bring it up when I would speak to them and I would avoid mentioning that there were certain things I just cannot do anymore. I would avoid speaking to people out of fear they would ask about it because I did not want them to worry. But I am in college. It is very hard to hide an illness when you live with three other girls and your brother lives across the hall with his three roommates. I was worried about how they would react. But then as I progressed through the semester, I began to see how wrong I was about how they would react to me.

I have strength and support from the people who know about my illness. They worry about me in the sense that if someone who is ignorant about my illness says something insensitive, they look at me to make sure I am OK. I have found how sympathetic my professors are and how much people who teach up to 600 students per semester can come to care for you.

But in this journey, I have also seen how little people can understand the struggles of someone with a chronic pain disorder. And that is why I resolved to educate people – to share my story and my experiences to show people that pain is often invisible and that those with chronic pain disorders are some of the greatest actors around.

young woman in white dress standing outside in a field

The people who are close to me would argue they notice I am in pain quite often — but those are the people who know me the best. Normally I am happy and outgoing and involved. People would never know how much pain I am in. But I realized that is not better for anyone. People need to know what it is like to live life the way many spoonies do. Why I wear only loose, comfortable clothing, why I bring food with me everywhere I go and why I will not go out with them after 7 p.m. It is not because I am lazy or boring.

I decided to bring my battle with my chronic illness to social media because people honestly just don’t know. I am not posting to make you feel sorry for me. I am not writing to earn your sympathy or to complain about my life. I am writing to empower spoonies everywhere. I am writing to explain the difficulties that people like me face every single day and to raise awareness for conditions you can’t always capture on a camera.

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Originally published: January 30, 2017
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