Ichthyosis Awareness Month – Carolyn’s story ~ “How I look is how I look and it doesn’t need an explanation.”.”

“I have ichthyosis or, to be more precise, I have Epidermolytic Ichthyosis, also known as EI. And I have a confession to make: It doesn’t bother me and I make no apologies. Approximately 1 in 100,000 people have this condition. Based on this smidgen of information I have been singled out in ways both good and bad as someone who is different with a capital D.

I’m not delusional enough to say I’m glad I have EI but I’m not horribly disappointed either. Not because it could be worse. Things can always be worse. At the end of the day, EI is my normal. In the same way being 5’3” with blue eyes and size 8 feet is my normal. EI is a chronic condition, much like diabetes, high blood pressure or seasonal allergies, nothing more nothing less.

There was a time when I did nothing but make apologies. It took an act of overt discrimination to get me to see how silly that was. It cost me a job but I gained so much more. Once I got through that horrible period I decided that I no longer needed to feel bad about how I look. I spent years walking around hoping no one would notice my skin. Once I gave that up and just accepted it for what it is, ‘came out’ if you will, the stress of trying to hide went away and my skin improved considerably. By improved I don’t mean I got that complexion the beauty magazines say we all covet. I mean I realized that how I look is how I look and how I look doesn’t need an explanation.

Once we understand that life is, indeed, unfair and accept the fact that EI requires an inordinate amount of attention and maintenance we can move on. There’s nothing wrong with asking to be cut a little slack for dealing with EI but we needn’t use EI as an excuse to avoid living. Traveling is hard but I love to travel. What to do? I envy the people whose skin doesn’t crack and bleed in the dry airplane air but I’m not going to stop traveling because mine does. It’s the price I pay for having EI.

The internet is a good and a bad thing. It’s good in that people with EI no longer need to wait for 21 years to meet someone else with the condition the way I did. It’s bad in that disability communities sometimes delve into the mentality that we’re more fragile than we are. Our skin is fragile. Our psyches needn’t be.”