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I’ve been thinking, as I have been known to do, about words. I like words. Words when strung together in a meaningful way, carry such power. They convey our most heartfelt emotion, our grandest ideas and our deepest secrets should we choose to share them.

I think I am thinking about words right now because I am finding them hard to write. Sometimes words are illusive. This is one of those times but in my thoughts about words, I have found myself thinking about words that are related to my sarcoidosis diagnosis…what it’s like to have this disease anyway and I’ve been surprised by many of them…

Determination, acceptance, struggle…all very obvious of course, but other words have come to mind as well, words like boredom and hidden and confusion and disregard.

I find that focusing too much on being sick is not only emotionally unhealthy, it is actually rather boring. I get bored by it and I know others certainly do. I can see the curtain come down in their eyes. People ask to be polite but they rarely truly care. This too is boring. If you don’t really care…don’t ask.

Hidden and confusion come to mind together as I think about my sarcoidosis. My disease is not obvious. I’ve written about this before. Not only is it not obvious, I often try to conceal it and this then confuses people. When you are “sick”, people have a preconceived idea about how you should look and behave. When you behave otherwise, you are judged.

This leads me to the word disregard. When you don’t behave like a “sick” person, your pain, your struggle, your journey is disregarded. When you try to live your life the best way you can and actually enjoy good days, you are seen as a faker or a liar. How could you be “sick” and go to the park or take a vacation or experience the sun on your face. When your “sick” you should appear as such or you will most certainly be disregarded.

I don’t like boring others or confusing them but I also don’t like being disregarded for what people do not understand which brings me back to my original point…words are powerful!

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