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My Child's Illness May Be Invisible, but It Is Real

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Having a child with an invisible illness is one of the most frustrating, heartbreaking and daunting things a parent can experience. On the outside, your child can appear healthy. They run with the other kids, get excited over a new PlayStation game. They go to school, they appear happy and content. People will tell you how great they are looking. They assume they are doing OK. Some teachers (usually the ones who haven’t bothered to familiarize themselves with his health care plan) will roll their eyes, just a little, when you tell them he isn’t feeling quite right today.

They don’t notice that the number of days they have had off school is an ever increasing number. On his bad days you keep them home, protecting them the best way you know how. They aren’t there with you as you hold them tight, whilst the anesthesiologist places that mask over his tear-streaked face for what’s probably the tenth time in his short life. They don’t see you pacing the halls outside the operating theatre, wondering what the prognosis will be this time.

People don’t see you administering the eight or nine medications your child needs every morning and every night, to minimize his symptoms enough so he can function somewhat like a child. They don’t see you anxiously hovering with a thermometer at the first sign of an infection. Sitting up late at night, wiping blood from their face when the trickle constantly flowing from their nose just won’t cease. Laying with one arm over them, so that you will know if they starts seizing in their sleep. Listening carefully to labored breathing, trying to decide when the right time is to head to the hospital.

They don’t see your child screaming in pain, to the point where they scream themselves to sleep. They don’t see the bowls of food being thrown, because their mouth is so ulcerated they can’t bear the thought of eating. They don’t see the bandages under clothes, placed there in a feeble attempt to reduce the agonizing swelling of joints.

They don’t see the pain in our eyes when our child can’t string a sentence together and retreats into their own world out of defeat and embarrassment.

People don’t see the other side. And the fact that my child manages to make others believe he is healthy, well, that makes him my superhero. He may be ill, but he is tough. He is brave. He is a fighter!

His illness is invisible. But it is real.

Getty image by Sasiistock

Originally published: June 19, 2018
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