07 May 2014

Ichthyosis Awareness Month: Haley's story. " I will always wonder what normal feels like."

Haley has Confetti Ichthyosis - doesn't that sound pretty?!

Her confidence is unwavering, despite the regular comments and stares she receives. The way she responds to others' reactions about her appearance - with humour and kind smiles - is commendable. There's an option to get angry and there's an option to ignore or respond with dignity. I love that she has chosen not to get angry.

Haley has written about the way the Internet can be a platform for negative comments about her appearance. I'm so glad she's using this same platform to educate people about her condition and show them how beautiful she is.

Meet Haley!

"My name is Haley Rice, I am twenty-two years of age and live in Texas. I was born with confetti ichthyosis. I am a bright, kind, honest person.

I believe that being afflicted with ichthyosis has had a significant hand in molding me. It's given me the ability too see the beauty in most things, too see the bright side of dark situations. Yet also the wonderful ability too not let the negative things a person may say to, or about me affect me. If anything I find it amusing.

Since I've been older I haven't gotten the negativity in person, but the wonders of the internet have given people a new platform for their cruelty. The occasional anonymous"Ewwwe you're ugly!" has definitely been sent in my direction. To which I reply with some smart mouthed answer and laugh about it for the rest of the day. I've never really let strangers opinions get to me. Their negativity was pointless. I never got what purpose telling another that they were ugly or anything similar, had. I'm all for honesty but there is a fine line between being honest and being flat out rude. Therefore I felt no reason too care.

Fortunate for me I haven't gotten as much of this as other people with ichthyosis may have received. A similar situation would occur when I was in public school. Some punk playground kid would find it cool too try to pick on the sunburnt looking skinny girl. Little did they know that I had two brother at home who( as siblings tend too be towards each other.) were decent bully practice. So when the kid would walk up to me and scrunch up their nose and proclaim "Ewwe, you look dirty." Depending on the mood I was in that day I would either touch their arm and see the look of slight terror cross their face as though they thought their arm might crumble and fall off, or throw some similar insult back at them and see the confusion on their face, as I'm pretty sure they expected me to burst into tears and run away. While they mulled in their confusion I would suggest that we play a game together in an attempt too befriend this kid. Sometimes this tactic would work, but not always. But this wouldn't happen often. I suppose I was just too smart mouthed to make a good target.

Though I made a bad target on the play ground, I was and still am a target of stares. I don't care how often it happens it never makes a girl feel pretty to receive stares of disgust or to have a finger pointed at you. Being in a wheelchair, with many other afflictions aside from ichthyosis certainly doesn't aid in this. But I just try too shrug it off and give a kind smile in response. It never will be easy having ichthyosis. I will always wonder what normal feels like.

Yet I am confident, kind and witty among other traits. And am proud too be a part of the ichthyosis community."


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. SO brave, courageous and gracious, Haley. You're an amazing human being! xoxo

  2. I would totally have sex with you.


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