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When I 'Don't Look Sick' in My Instagram Photos, Here's What You Didn't See

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I’m just going to get right into this story since my entire body is weak and my hands are shaking, but I️ want to share my story. I️ am 22 years old and have been diagnosed with fibromyalgia along with a few other diseases (Sjögren’s syndrome, chronic inflammation, anxiety, depression, you get the gist of it). It has been a total of a year and a half since this monstrous struggle started and my current flare has been going on for a week and a half (more than that, but I’ve been completely bedridden for a week and a half).

People often tell me that I️ don’t look sick or that it’s all in my mind (yes, someone actually told me that my chronic and debilitating pain is all in my head). While I’m thankful that I️ don’t look as bad as I️ feel, this hinders my case when I️ stay home. One day I️ could go to a concert (either in a wheelchair or slumped in a seat) and then the next day, be absent from school. People always say, “Well, she was feeling good enough to go to a concert but not to school, she must be faking it.” While that couldn’t be further from the truth, people don’t see what’s behind my Instagram pictures of the amazing concert that I️ went to last night.

They don’t see the part where I️ can’t get out of bed in the morning. They don’t see the part where my boyfriend or my own mother have to help me take a shower. They don’t see how many heating pads I️ have to use. They don’t see the amount of pills I️ have to take. They don’t see how when I️ do go to school, my mom drives me. They don’t see how I️ can’t even hold my own head up to eat. They don’t see how I had to quit my job because I physically couldn’t do it. They don’t see how I can’t even muster up the energy to shower or brush my teeth. They don’t see how depressing it really is. They don’t see how this illness is ruining my life.

All they see is the girl who goes to concerts and sometimes show up at school without complaining about how everything hurts and it takes all of my energy just to write something with a pen. They see the girl who hides her pain by laughing and smiling with her friends. They don’t understand how all I️ want to do is go out on a Friday night with them, like a “normal” 22-year-old college student would. Instead, I’m cramped up in my bed with my heating pads and medicine trying to find something to watch. It’s miserable. Just because someone seems like they’re in a good mood, doesn’t mean they’re not suffering.

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Originally published: November 11, 2017
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