18 May 2014

Ichthyosis Awareness Month: Shawnie's story. "Today I am done hiding and wishing for something different."

I love Shawnie's story. The confidence she's developed despite all the adversity she's experienced is so heartwarming. I can relate to a lot of what she writes, especially the realisation of not needing to be invisible or wish my life was different. She has Netherton's Syndrome.

Meet Shawnie Miller, a self proclaimed superhero.

"Like all kids do, I wished for superpowers when I was a child. But it wasn’t to fly, or to read minds, or to have superhuman strength—what I wanted more than anything was the ability to make myself invisible. I imagine that I wasn’t too far off from the wishes of most people afflicted with Netherton Syndrome; let’s face it, we get noticed even when we are trying to be as inconspicuous as possible. The stares start as soon as you walk into the room.

People’s “subtleties” scream out at you, and even as a child, you begin to routinely answer the whispers in your head:

“Is that a girl or boy?!”


“What’s wrong with her hair?!”

It doesn’t grow, and do you like the barrette that my mom put into my hair in the attempt to show that I am “normal”?

“What is the matter with her skin?!”

Generally it breaks out into this scaly rash. I know it looks bad, but I promise you that it is not contagious.

“I dare you to touch her!”

Please don’t. It hurts.

As I got older, the whispers only became worse. Now, most people would think that children were the worst, but that is just not the case. Children are curious, but it is adults that make them cruel, and I saw this display of cruelty often. I remember the walk that I took, and the mother who dragged her child across the street when she passed me, only to cross back over when I was away. I was ten. I remember the woman who refused to take her change from me when I cashed out her check as a cashier. I was fourteen. I remember the family who didn’t want me to wait on them at a restaurant because they were disgusted by me. I remember the confused looks on your children’s faces. I was 18.

Children, however, just possess a forthright curiosity that does not waver when they ask you questions. They want to know, and they want you to answer them. It was those children that forced me to stop hiding in the woodwork and begin to feel comfortable with myself. Children who forced me to answer their questions, and when I finished educating them on that part of me, that would shrug and smile...and then say, “Cool.”

I stopped wishing for invisibility that day. I realized that while I was trying so hard to blend in that I actually was honing the true superpower that I had. I had the power of discernibility and all those times that I was angry at people for their cruel actions, it was just because people are afraid of what they don’t know. Today I am done hiding and wishing for something different. I teach kids now, and I always use my experiences to teach tolerance and diversity. I use my relationships with them to help them understand people and their differences. Children turned me into a true superhero."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.


  1. Carly you are a brilliant, inspiring human being. I hope that man you are marrying knows how incredible you are.

  2. Shawnie - thank you for sharing your story and I agree with you whole heartedly that adults are far meaner than children. Blessings and hugs.
    mom to an almost 7 year old boy with Lamellar Ichthyosis.


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