Living with Harlequin Ichthyosis

Disorder not a disease

I've written a post similar to this I think but I thought I'd get into more details now since I have time..
Living with H.I is no easy task... From my first appearance into this world I have been doubted, as soon as I was born the doctors told my mom that I wouldn't make it through the night, if I did I wouldn't last much longer.... After a few weeks they said I'd be VERY limited to what I could do and couldn't do. I stayed in the hospital for a good while since I was so prone to infections, dehydration, etc..I came home and  my momma took fantastic care of me, as well as my grandma.

Lets skip to Kindergarten- I started school at 5 years old and hated it at first! It had always been me and my mom so leaving her side for 8 hours seemed like torture to me. I cried every single morning then a little boy who I thought was the greatest boy ever because he made me laugh, bought me a Cabbage Patch Doll to cheer me up in the mornings.. I still have it! Kindergarten went fine, I learned to like it since I had no choice (haha!). The only negative comment I remember hearing was when another girl told my friend not to play with me because "I was yucky and if we touched the same things, she would get what I had." soon after hearing it another friend of mine quickly snapped back "WHATEVER! You're just a b*tch! Thats not true!!!" She said as she touched my arm. Probably not the best way to handle it but I believe she made her point.

First grade I started wearing wigs because I felt like it was easier to blend in.. Well the shiny red skin isn't too obvious, right? Shoot, put a blonde almost yellow wig on a red kid you'll hardly notice her! Before that I wore hats that matched my outfit perfectly! I grew up in the 90's so big floppy hats were my moms pick. Thanks momma. We talked to my teacher on the first day of school and she talked to the class before I went into class... Keep in mind I attended a very small public school that the same kids I went to Kindergarten with were the same ones in my Senior class, give & take a few.

Going out in public was and still is an adventure. My mom used to get SO mad at people when they'd stare, point, gasp, etc.. She would get very rude with them quick. I'm her baby! No mom wants their kid to have to endure humiliation, rudeness, down-right meanness. My momma def. didn't put up with it and would always tell me I have to stick up for myself no matter what and to not care what people thought of me because God made me how he wanted me and theres a reason for everything.  My hometown is VERY small so word got around over the years so when I'm home no one really looks at me too different anymore.

As I got older I started having a social life. Hanging out with friends at the local skating rink or bowling ally was a pretty regular Friday night activity for me. The nearest mall was 45 minutes away (in the town im living in now) and its a pretty big town. Needless to say LOTS of stares, gasps, whispers and pointing. As I got older it never really bothered me much but when it did, it 'ticked me off' more than it hurt my feelings. I've always been pretty quick to defend myself but when I was at the mall with friends or out to eat my friends are the ones that jumped to my defense. I still have to tell Nikki (one of my longest best friends) to calm down, I got this!

Its always frustrating in a new town because my skin condition is so rare, hardly anyone knows anything about it. I'm all about spreading knowledge about my skin disorder to anyone, thats the main reason for my YouTube channel and this blog. The problem is people dont ask, they assume! You know what they say about people who assume, dontchya? ;) They  alwats think I'm suburned, stayed in the tanning bed too long or have an awful spray tan.. Theres a million and three other assumptions out there but we're not getting to all of them! Very rarely does anyone actually ask about my skin without being a complete ass. Honestly, I'm not sure of a particular "nice" way to ask but nudging your friend to gawk at the red girl then whisper is a sure way NOT to.

In my old age of 19, I've learned some sure fire ways of getting them to stop with hardly any communication at all.. Because frankly, after you experience some peoples ugliness you just don't have the strength to nicely educate them on your disorder without throwing a few choice words in the lesson.
1. Most of the time if you make it obvious that you see them staring, they'll stop due to embarrassment of just how much of a jerk they are. So look at them back.
2. If number 1 don't work because of some reason such as, they're too mesmerized by your beauty to even notice you're looking back, googly eyes work as well!
3. If the first two don't work- flipping 'em the finger almost always works!. Since my fingers don't stretch out all the way my middle one of course is a little bent but I promise you it does its job well! It's a trooper. :)
4.If none of the above work, its time to get ugly. haha! Kidding!...A little.

I've wrote about the negatives but there truly are positives!

I appreciate peoples personalities.
I'm so much stronger than I think I would be if I didn't have this condition.
I'm very in tune with my body.
I appreciate the small things.
I try my best not to judge people until I get to know them.
I've forced myself to be outgoing.
I've realized I love teaching people about my disorder.
I've learned to defend myself and other people.
I'm very opinionated.
I'm very close to God, although I could def. be closer.

Theres so many other positives but thats all I could think of at this very minute. It may be hard for some people to understand but I do consider my skin disorder a blessing, not a curse. I believe I'm meant to make difference and thats what I intend to do somehow or another. Questions or comments? Let me know! :)