28 May 2014

Ichthyosis Awareness Month: Brittany's story. "After years of figuring out that I was meant to be loved I started loving myself…including my skin."

There's an ongoing theme with these stories for the Ichthyosis Awareness Month Blog Project - and that's gratefulness towards the skin condition that has made life such a challenge. Brittany writes about her gratitude to Ichthyosis shaping her current outlook.

She spent many years struggling with her Ichthyosis - especially coping with the taunts from other children. And then she found her husband, and found God - and eventually she found love for herself, recognising physical beauty in herself. She's a successful woman - a business owner, wife and mother.

That Brittany calls herself "a real life mermaid" makes me smile. I love that after so long she finally loves herself - and is passing that sense of self respect to her daughters.

Meet Brittany. She's got Lamellar Ichthyosis.

"Growing up in the Southern state of North Carolina with Ichthyosis was not easy. I grew up in a place much like a lot of places on the earth where your physical appearance is very much your identity. I was always told, what’s on the inside is what counts. But, growing up I felt a difference of opinion.

In North Carolina we have 4 seasons. 4 different changes. Cold winters, and HOT summers lead to skin craziness for someone with ichthyosis. I struggled dealing with the fact that I had an abnormality that everyone else I knew didn’t, and I was ashamed of it as a child.

I remember crying because my skin hurt, but more because I felt ugly. I felt hideous. I had a bald spot on my head from my head where hair never grew, and not to mention I’m only 5’1 in my adult years! EVERYONE always commented, “Is your life that stressful? YOU’RE BALDING!” I begged for hair transplant surgery knowing that it would never happen.

I always wore pants, never shorts because unfortunately I was pasty white, and scaly. I was embarrassed, and in those HOT summers I would get so hot, and then just go inside because I had to cool off.

The flip side of that is growing up in the south you’re expected to treat each other with respect. Although most kids did there were a few that were flat out mean. “Alligator, fish girl, EWWW what is that???” were not but a few of the comments from those kids, but what’s worse I knew the others just didn't say it to my face. Many nights I cried, “God, PLEASE either take it away or me all together! I’m tired of this! NO GOOD can come out of this!”, because I just wanted friends, and people to like me, and not be afraid of my skin disease. I thought I look fairly normal, but then again I knew in my heart what they were saying was true. Little did I know that this was my opening door to realizing who God was, and I began to get curious about what was in this Bible, and such. Because of this curiosity I gave my lifeto Christ at age 16.

I met my now husband when I was 12 years old. The only person to never comment on my skin condition. He never once said a word about it. Didn’t even question it. I never felt so normal with anyone. It wasn’t until meeting my husband that I started to realize that I was beautiful, and started paying attention to the other parts of Brittany that were beautiful. I have beautiful eyes, and when taken care of the right way…my skin isn’t so bad, all those years I just didn't know how.

After years of figuring out that I was meant to be loved I started loving myself…including my skin. I joked with numerous people that, “Well….If you really want to get technical….I am a real life mermaid.” 😉

If it wasn’t for my skin disease, I really don’t know if I would have been truly able to love myself, and give that kind of love back to others. It’s taught me that I set the bar of respect for myself, and that if I don’t love me…no one else can. Great qualities that I can now pass on to my lovely young girls that I am raising now {None of my girls have my skin disease}.

After having kids of course my skin changed, and I was looking one day some education because I had never actually been to the dermatologist since I was diagnosed! I know for shame! But! The great thing about that is I found FIRST. A foundation for Ichthyosis & other related skin types!!!! I couldn’t have been more excited! I had never met anyone with my skin disease in 22 years! I didn’t realize that there were other people with my skin condition! I cried as I talked with Chris Wassel (from FIRST) about how I was so overjoyed that I had someone now that understood, and people that I could talk to, and build relationships with, like Ms. Carly! Also, I realized that my situation could be worse. My skin is mild compared to many! Finding all of this out I began to become thankful that I didn’t have it as bad as some, and it made me grateful that I am able to do some things that others can’t do.

Since finding FIRST I have realized how my skin disease doesn’t have to hold me back. Although I loved myself now, for some reason I didn’t do a lot still because of my skin disease. I saw it as a obstacle that I couldn’t overcome. It was like a lightbulb that went off!

I now can say that I 1000000% support FIRST foundation, own my own business, am a wife, mother of three girls, and best of all this skin disease has made me have an even closer relationship with God. I don’t know that I wouldn’t have still gave my life to Him sooner, but I do know that He used this skin disorder to open my eyes to Him. For that, and all my other gifts from this disease, I am thankful."

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.


1 comment:

  1. Hi Carly! I saw you at AV train station today, sat near you just before the train came, on the benches in that little outside room. I wanted to say hi and that I love your blog, and pink coat, but I'm a bit shy haha. It was really awesome to see you in person! Louise xx


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