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Please Don't Say These Things About My Daughter's Invisible Condition

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My teenage daughter has lived with chronic pain and illness for more than five years. She used to be a completely carefree child with a little illness here and there but a lot of injuries. At age 10, on one fateful day, one of these injuries became constant pain. Soon after, that constant pain trickled into more and more symptoms. It wasn’t long before chronic invisible pain attempted to shatter my little girl. Through all of the symptoms and scary times, a girl I’ve named my “Smiling Warrior” emerged. She lives in a land I’ve named “Abnormal Normalcy.” She’s my hero.

Many days, I wish I could make the world understand the concept of “invisible.”

 “She looks so good.”

 “I thought she was doing better.”

 “Won’t she outgrow this one day?”

 “Have you ever tried _______ [insert juice, new supplement, shake, etc.]?”

 “Oh, my grandma has that problem.”

I share.

I educate.

I advocate.

Does anyone even here me?

Sometimes I wonder.

My mind is so divided. One part of me wants to grab (and shake) each and every person who just can’t seem to get it. Another part of me wants to not even care what anyone thinks they know.

I’m beyond aware this is all difficult to comprehend. It’s a puzzle beyond challenging. It often makes no sense at all. And silly me expects my words to be listened to and even taken as truth.

This is my child’s reality, whether you choose to understand it or not. I wish we didn’t have to attempt to understand the absolutely bizarre, but we do, because it’s our daughter’s life. The research never ends. The support, education and advocacy which allow her to live this life has become my life.

I say, “She’s hanging in there.” or “It’s ups and downs.” We just keep on going.

Fortunately, here and there we see a few glimpses of better — sometimes hours, sometimes just moments, but that better never means freedom from her dysfunctional body. That bettercomes with a high price. Decisions on pacing and balance have replaced the impulsiveness and carefree nature of youth. I’m grateful for what my Smiling Warrior has in life but also stung by what she’s given up.

There might be times she looks good. (She’s mastered presentation of the shiny facade for the public.)

There may be times that she is doing a little better. (Because she gave up trying to do it all or even half of it.)

She’s not going to outgrow this. (But she’s learning every day how to grow with this.)

We’ve tried so many things. (But longterm solutions aren’t found in gimmicks.)

And please don’t compare her symptoms to your aging problems because she is a young girl and not an old woman (although she often says she feels trapped in an old body).

So, onward in the land of Abnormal Normalcy, where the only consistency is the inconsistency.


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Originally published: March 31, 2015
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