17 May 2015

Ichthyosis Awareness Month - Denice’s Story:“It’s taught me to love like I want to be loved, to treat others like I want to be treated, to have an open mind on all accounts”.

Denice has Lamellar Ichthyosis. She writes about teaching her children that being comfortable in our skin, both physically and emotionally is the most important aspect of our lives. She talks of being at an age that she has learned to love herself and doesn’t care how other people perceive her at first glance. I think a lot of us could learn from this strength. 

Meet Denice.

"I go by Denice. I am 46 years old. I live in Pickens SC, in the USA. I was born with Lamellar Ichthyosis. I have three kids, two boys and 1 girl. I am the first on in my family with the disorder. I do have a younger cousin with it. My kids do not have the disorder. Ichthyosis is hard to live with even in today’s time. Unless you have a family member with the disorder you hardly ever meet anyone with it. These ichthyosis sites are so inspiring, great people to know.

My daughter asked me the other morning why I do all this. I asked her what. She said this suit thing, she said she loved me just the way I was. I told her it was more for me to be comfortable. I like the way I look too, but more these days I just want to be comfortable. I am at the age that if people don't like the way I look, then so be it. I have learned to love myself, God made me this way. I am special in His eyes. I have had a good life. Yes it’s been hard but good. I had great parents growing up, who supported me in every way possible.

Ichthyosis has to a point, made me the person I am today. It has taught me to be more kind to others and loving. To not just look at the outside but to look at the heart. To see the person, not how they look or dress etc. I guess it’s taught me to love like I want to be loved, to treat others like I want to be treated, to have an open mind on all accounts. But it has also taught me that love hurts, people hurt you but isn’t that part of just living? Your life is how you make it, don’t worry about what other people think. Love, laugh and enjoy to the best you can, life is too short. I have learnt over the years my life isn’t any different than anyone else’s, I just have a skin disorder, and I have to throw that into the mix of everyday life. I am no different than everyone else. I just live my life. I went to school, I dated, I got married, I lost a husband, I lost other family along the way. Having ichthyosis didn’t make my like any worse along the way. Yes, it was hard and tough at times, it’s made me strong. I survived, I will live my life to the fullest I can.

Education of ichthyosis is important so I will continue to share what I have learnt over the years and what I am still learning but I guess the most important thing I can tell everyone is to live, love and laugh, don’t let life pass you by.
Grrrr, people without ichthyosis do not know what we go through to look somewhat normal. I sleep in a vinyl sweat suit with some medication I use on my skin. I stay in the suit 10-12 hours. When I put the suit on tonight I couldn’t find my gloves. I use the long type that you use to wash the dishes with, so instead I used medical gloves. Then the bottom of my pants busted. What did I do then? I grab a trash bag and pull it on like pants, hey it works. I look like an alien from out of space but hey, my skin will look great tomorrow, after I scrub it for 4 hours. So people stop complaining about how you look and be thankful that you’re alive. And before you make fun of someone, think because that could be you."

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.

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This post was edited by Clare who blogs at The Life of Clare. Do check her out. 

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