The Skin I'm In

When I was about five or six years old, I remember thinking it was a rash appearing on both my legs. “Mom,” I said. “What’s this?” The “rash” started to get worse and more cracks were appearing.  I remember trying to scrub it off while in the bathtub, but whatever this “thing” was, it would not go away.  I remember getting frustrated and crying when I realized whatever this was on my legs was not leaving any time soon.  Since I was so young, I don’t remember my mother talking to me about how to take care of the problem. As I got older and started to complain, she mentioned something like “Kendra, it runs in the family, whatever it is.”

The doctors didn’t even know what “it” was, but they knew to treat it as if it were eczema.  Once into adulthood, I discovered what “it” was when I ran across a picture on the internet of a leg that looked exactly like mine!  I said to myself “hold it! What is this?” When I showed it to my father, he was just as stunned as I was. “It” was a genetic skin disorder called “ichthyosis.”  I learned that there are different types of this disorder.  It appears that I have the ichthyosis vulgaris type.

I began thinking back to when I was teased constantly in school, especially by the boys. I was a shy person and not the most popular, so I took the teasing really hard.  “What’s wrong with your legs? What are you, related to an alligator?”  I’d pretend like it wouldn’t bother me so I would seem tough, but it did.  I’d go straight to my room after school and stare at my skin with anger, frustration, and with tears in my eyes.  I didn’t want to be different. I wanted to be like everybody else.

Unfortunately, this embarrassment would lead all the way up to high school where I’d constantly try to cover my legs, even when it was hot outside. I’d dress in male shorts so they would be long enough for people to not notice what was there. Thankfully, the guys that liked me growing up never really paid attention to it, or did but just didn’t care.  I’ve had some serious relationships, and I’d explain to what it is. Fortunately for me they’d listen, understand, and continue to date me because they liked me.  You’d think that would be enough for me to let the embarrassment go, but it wasn’t.

I remember my ex-fiancé asking me a few years ago, “Hey what’s that on your back?” And I thought to myself, “No! It’s beginning to spread.”  I’m thinking not only do I have this on my legs, but it has become very noticeable on my lower back and the back of my arms.  Into my adult years, I learned to accept the situation, but would still find myself longing for it to disappear.  Now at 25, I still find myself embarrassed.  I’m not embarrassed around the people that know about me, but around new people who don’t know about my skin until summer comes around.  Once in a while I would hear “what’s that?”  Or, I would catch someone glancing every now and then.  Sometimes I find myself trying to hide my legs by curling them behind me when company visits, or if I’m in a place where there are people that I don’t know.

Thankfully for me, with the help of family members like my older sister, cousins, and my best friend, I’m learning how to accept the skin that I’m in.  I have a degree in Theatre and I have been trained to be ready for whatever comes my way.  I am very aware that certain things will be very challenging for me when it comes to my profession because I’m different.  I can’t tell you how many times I’ve been asked “why don’t you show those beautiful calves of yours” or, “why don’t you model Kendra?” And I’d answer “because I don’t like showing my skin.”  When the reality is, I know a lot of people in the industry can have a hard time accepting “bad skin,” so I find myself already accepting rejection before I’m even rejected.  That kind of thinking can do more harm than good when you’re trying to strengthen your esteem level when it comes to being comfortable with what you have, flaws and all.

Now, instead of being so uncomfortable about my difference from others, I am learning to accept it, and to not be scared; to support people with the same problem that I have. It doesn’t even mean having a skin disorder, it can be anything that makes you feel different, whether it’s your skin, the loss of your hair to cancer, not having the ability to walk or talk anymore, or even the loss of hearing or sight.

You see, we are all created differently.  If we were the same, the world would be a dull place.  So if someone were to stop me today and ask me that usual question “what’s going on with your legs, back, or arms,” I will just have to take a deep breath, explain to them what it is, and educate them on the disorder.  When you think about it, I guess there really isn’t anything to be ashamed of.  Instead of hiding from this disorder every time someone asks, we should take that same energy and use it as an opportunity to educate others who are unaware of disorder so that they can get a better understanding and know that “I’m just like you. I just came with a little decoration.”  Actually, I’ll keep that in mind as I go on my first full photo shoot a week from now. Who told me that I couldn’t model because I’m “different” anyway?  I forget.

Be comfortable in the skin you’re in!

Kendra-Ann W.
Benton Harbor, Michigan
 

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.