Ichthyosis Awareness: Questions, whispers and stares. A guest post by Bailey.

As a blogger, I’m constantly aware of the privilege of being able to broadcast my opinion, and also that not everyone will agree with my opinion. So when I wrote a blog post on the intrusion of peoples’ curiosity, I got a few comments disagreeing with my opinion and the way I view questions and comments about my skin.

So I invited an alternative opinion to be published on my blog. You might remember Bailey from Ichthyosos Awareness Month in 2013 and 2014. She’s written a guest post today. While I don’t entirely agree that it’s our role to educate everyone we meet, I do agree that our reactions to these questions and comments shapes others reactions to our skin. And I’m always interested in a contrary opinion if it’s well considered. It’s a reminder that we all experience Ichthyosis differently.

Here’s Bailey.

“”What is wrong with her?” “Were you burned?” “Why is her skin like that?” “Spent too much time in the sun?” Whispers. Stares. Double takes.

For those of us living with ichthyosis, this is all a part of our daily lives. It doesn’t matter where we go, we are bombarded with it. We never truly get a break away from it all. I used to hate it. I used to feel like people were rude to even ask. I used to be rude back and give them the cold shoulder. I used to think they had no right to point out my physical difference or ask about it.

Then, over time I changed. No, my skin didn’t change. I still have this outward physical difference that is impossible to overlook, but my attitude changed. Maybe it started changing years ago when I saw my first black person (I grew up in a small town where there were not people of other races) or maybe when I finally met someone else with ichthyosis. Maybe it was when my Mom began to realize that her rudeness toward these people was negatively affecting me and causing me to be more insecure in my appearance. Whenever it was, I began to take a different approach. After all, if I did not have ichthyosis wouldn’t I catch myself doing a double take when I saw it? It wouldn’t be on purpose. It is just a natural human instinct. We are made to be curious, to be full of wonder, to want to know why something is the way it is. Think of children. They are constantly asking questions. “Why is the sky blue?” “Why do we do that?” “What is that called?” “Why? Why?

Why?” It drives parents crazy. Adults tend to suppress a child’s sense of curiosity and as we get older we begin to question less, but that doesn’t mean we don’t still have those questions going through our head. So yes, people are going to wonder why my skin is dry…or red…or flaky…or scaly. I have learned to be open with my ichthyosis and to encourage people to ask about it. I bet you’re wondering “why?” Well, to me it is important to make more people aware about ichthyosis and how can I do that if I ignore the questions and don’t answer them?

We need to be advocates for our differences and share about it every chance we get. That might be on a national TV show or in an international blog, but nine times out of ten it happens in everyday life with the people we meet on the street. We need to allow people to ask their questions. Are some people rude? Absolutely, but I have also realized that sometimes people aren’t genuinely rude; they just aren’t sure how to ask the question. Usually within the first minute of conversation with them, you know whether or not it is worth continuing to inform them. If they are rude, you don’t need to waste your time with them. But everyone deserves a chance. I also know that sometimes people are afraid to come to us directly. They feel like they are being impolite asking us about our skin, so they ask our best friends, the baristas at a coffee shop, or a classmate. Is this wrong? No, they just feel more comfortable asking someone else.

My roommate from college, Natalie, was always getting questions after I left the room. She always told people that I was willing to talk to them about it, but they felt more comfortable talking to Natalie. And thankfully those who are closest to us are able to pass on the info accurately! The other big difference I noticed when I changed my attitude toward the questioning, the whispers, and the stares is that my confidence grew by leaps and bounds! It got me talking about my skin. It made me realize that I am unique in a positive way. It helped me to share my story. And most people are truly inspired after talking to us…to see the strength we show in our daily lives, to admire the confidence we have, to be amazed that we haven’t let the negativity and adversity of the world to bring us down.

So, can those questions, whispers, and stares be intrusive? Yes, if we let it. But let’s change our attitude. Let us look at each interaction as a rare opportunity to teach, to display our unique beauty to the world, to say “hey, I’m different but different is beautiful”, and to be proud of the skin we’re in.”

For more posts on Ichthyosos awareness, click here. And for some useful Ichthyosis and appearance diversity resources, click here.