After my Reddit experience, many people contacted me to tell me they too have Ichthyosis. I guess they saw my story and realised they’re not alone – which was a really lovely thing to happen. Erica Clark was one of those people who wrote to me. We’ve been in touch ever since. She tells me she has a mild case of Ichthyosis, but it doesn’t make peoples’ ignorance toward condition any easier to deal with.
Meet Erica. Isn’t she beautiful?!
“Ichthyosis has always been a huge part of my life, but ironically it wasn’t until grade school I knew what it was. As a little girl I had excessively itchy, dry, and peeling skin, along with constant infections, but all my pediatricians said it was simply an extreme case of eczema. They would give me dozens of sample bottles of lotion to try, but they all burned terribly and never seemed to make much of a dent in my thick, dry skin.
At age five I joined a softball team. It was horrible. I don’t blame my parents for telling me I couldn’t quit and to ‘stop my whining’. How were they supposed to know their kid didn’t sweat?
When I was seven my mom had gotten sick and tired of my skin being an everyday struggle and nothing helping much. On top of how miserable it was, I was being picked on in school a lot too. Kids don’t understand when someone looks a little different. I didn’t really understand it myself.
Once I got my next staph infection, instead of going to the pediatrician, she took me to a dermatologist. They talked about the newest lotion I was using while she skimmed my medical records. She stopped and looked at me, then my mom and said, “You do know she has ichthyosis, right?”
Simply knowing what it was didn’t make everyone understand. A big question I would be asked is, “How could you not know you didn’t sweat?” The answer was obvious to me. I was only seven years old. I would respond with, “How was I supposed to know everyone is supposed to sweat?” At that young of an age, it never crossed my mind.
Middle school was very difficult for me. Bullies noticed the dry skin, the red patches, the dead skin that would stick to my jacket when I took it off. That was when I started to do my best to hide it.
I resented ichthyosis as I imagine most people with it do at some point or another. I already had to deal with the soreness, the itching, the lotion, the baths, the dead skin, the infections including MRSA five times, and everything else that comes with it, why couldn’t everyone just leave me alone?
It got better when I reached high school and I could hide it much better. It was still noticeable, but nothing like it was, and I was grateful. Even though it was better, I still wanted to hide it. It really affected my social life. I wouldn’t go to any outside parties, never go swimming with friends, not do anything that would cause someone to find out. Only my closest friends knew exactly what I was dealing with. I didn’t even want a boyfriend until my freshman year of college.
That first boyfriend of mine taught me a lot about myself and my skin. The year I spent with him was huge in accepting myself as is. He made me realize my self worth isn’t diminished because of my skin troubles. But he never intended to do that.
He hated my skin. He would point out it was ‘weird’ and ‘gross’. He encouraged me to keep it covered as much as possible. The reason I stayed with him for a year was I thought everything he was saying was true, so I accepted it. Until one day I woke up and realized true or not, being alone would be better than what I was dealing with, so I broke up with him.
The reason I’m going into detail about this time in my life is I did my best to surround myself with positivity to change how I felt about my skin. Positive thinking is powerful, and it worked. I don’t measure my self worth by how my skin looks anymore.
A couple month later I met my current boyfriend. He loves me the way I am, ichthyosis included, and I am so grateful I found him.
These paragraphs aren’t intended to say my confidence hinges on other people’s approval. It’s actually the opposite. I learned I gravitate towards people who agree with me. If I see my skin as a problem, I attract like minded people. If I see it as a part of who I am that I shouldn’t be ashamed of, then that’s the type of person I’ll spend my time with.
I wish I could say I’m fully open all the time about my skin, but I’m not. I’m working on it every single day, and Carly’s blog has helped me open up way more. If people stare, sometimes I say, “I have ichthyosis, so what?” or on one of my better days I simply shrug it off. I don’t let that get me down anymore because I’m more than just skin, and I love who I am.”
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.