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What Years of Hiding Taught Me About Living With a Chronic Illness

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I used to hide. I spent years hiding my illnesses from my family, my friends and sometimes even my husband. People close to me knew I was sick, but I tried really hard not to discuss it. I would say things like, “Oh, we are doing great. I’m fine, don’t you worry about me.”

I said these things because I was afraid. I was afraid of the awkward silence that tends to follow being honest with someone or people thinking I was faking because I don’t look sick. I was afraid of comments like, “Oh, I once had a really bad flu, so I know how you feel.” I was nervous people would avoid me because they didn’t know what to say, and so they would say nothing. I didn’t want people to think I was the girl who complained all the time.

I was afraid my mom would cry, and that I would have to comfort her. I feared my kids would internalize having a sick mom, one who couldn’t be normal like Johnny’s mom. And I didn’t want to add more weight to the world my husband already carries on his shoulders. I was afraid of all of it.

After years of hiding and being dishonest and unauthentic, I’ve come to learn a few things:

  • Telling your story helps you heal emotionally.
  • Telling your story helps educate people. It helps them understand exactly what you are going through.
  • Some people may judge you, and that’s OK. Learn to let it go.
  • If people don’t know the truth, they might make assumptions when you cancel plans at the last minute or tell them you’ll let them know.
  • You will learn to let go of other people’s reactions. They aren’t yours, anyway.
  • People will surprise you with their kindness. People can be awesome when given the chance.
  • Being vulnerable enough to share something that scares you is empowering.
  • Telling your story puts control back in your hands.
  • Telling your story opens you up to a world of people who, upon hearing your story, can say, “me too!”

With the help of your new found transparency, you will learn tips and tricks from others with similar issues as well as how an unexpected kind word can brighten a bad day.

Now I am the girl who leads with her story. If you meet me and we plan a coffee or lunch date, you’ll probably hear me say something like this, “I am so excited to have lunch with you, I’m chronically ill and some days I get sick out of no where. If that happens, I’ll let you know.” People are usually very kind about that, and I’m comfortable because I’ve set clear expectations and shared a little about what my life looks likes from the very beginning. This helps me deal with the heartbreak of people calling me a flake, or telling me to just suck it up. I set the expectations now, even though I can’t control the reactions.

I also tell my family and my husband when I’m not feeling well. This helps me avoid snapping or losing my temper when I’m sick or in pain because I’ve been proactive and have asked for help or space. I said this before, but I want to say it again – people can be awesome when given the chance.

Originally published: August 28, 2016
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