25 May 2014

Ichthyosis Awareness Month: Laura's story. "There will always be those who stare or say something offensive, but it’s easier to brush those off when you have positive interactions with others as well."

I first noticed Laura when she started posting a lot of wedding photos on Facebook! I was so excited for her - she made a beautiful bride.

Laura's story continues the theme of living a 'normal' life - she has a job, friends and a husband, and her Lamellar Ichthyosis is secondary to this. She credits support from her parents and friends, and a positive attitude, in shaping her life.

Meet Laura.

"I was born in Bermuda in 1985 and diagnosed with Lamellar Ichthyosis in Boston at three months old. Throughout my childhood, my parents took my to a dermatologist and took care of, and taught me to care for, my skin. Luckily, I didn’t suffer with any of the typical complications others often do, such as skin infections or eye trouble. My parents and I were fortunate to attend many FIRST family conferences where we learned more and benefited from meeting others with similar challenges. I also had great experiences at summer camps in the U.S. for children with skin disorders, and I’ve been friends with Diana Gilbert, a fellow Bermudian with Netherton’s, since forever. There is a particular feeling of support that comes from knowing there are other people out there like you, with similar challenges and experiences. IAM definitely contributes to this!

I feel the main thing I’ve benefited from, though, is that my parents treated me like a child without a skin disorder, at the same time as they did everything possible to take care of my skin. They fostered in me a sense that my skin disorder is simply a challenge I live with, just like so many others people live their lives with diabetes, asthma, blindness, or a missing limb, for example. They acknowledged and helped me to handle the difficulties, while reminding me of how my situation could be worse, and all the capabilities I do have. Thanks to that way of thinking they instilled, and despite the tough times that we all experience, I tend to treat my skin as an inconvenient reality without letting it rule my life. Taking care of my skin takes time obviously (sometimes I am just so tired of showering and moisturizing - again!), but I do it so I can be comfortable while I go about my busy life. I also try to dress nicely, watch my figure and wear a little makeup or jewelry, which helps me feel more ‘normal.’

I put normal in quotation marks above because, really, it’s all relative. Like other bloggers have said before, my skin does not define me. Admittedly with years of effort (that old adage “fake it til you make it” works!), I now usually ‘forget’ that I have my skin condition in that it doesn’t occupy my thoughts too much. It is simply a part of my normal.

I credit my family and my oldest and closest friends with helping me gain the confidence to feel this way, which I strongly believe has in turn enabled me to put myself ‘out there’ more. It’s not always been easy - the teen years are difficult for almost everyone in some way - but I have found that if I act confident in ‘my normal,’ people respond similarly and seem better able to look past my skin. There will always be those who stare or say something offensive, but it’s easier to brush those off when you have positive interactions with others as well. I think a positive attitude and a sense of humour goes such a long way in this respect.

Just as I am fortunate to have had my family and friends who are cool with ‘my normal, I caught a lucky break in meeting my new husband (still exciting to say that!) who has treated my skin as simply my own version of ‘normal’ as well, which made our relationship possible. He will tell me when my cream has left a white smudge on the back of my top before I go out and understands my long baths, but isn’t overbearing about it, volunteering to exfoliate my feet or something, unless I ask. I am happy that I can look forward to not only hanging out and keeping house with him, but also to continuing at my great job as a life reinsurance analyst at an international company in Bermuda, spending time and partying (maybe a bit too much!) with our friends, and spending time with our families - especially all the little nieces and nephews.

Truly, I believe that what my parents first promoted, and what my friends and family reinforced, that my skin does not have to be my entire life, has gotten me where I am today (along with some luck of course!) A positive outlook (which I’ll admit is not always easy to muster) is my key to enjoying life. I figure, as far as we know, we only have one, so I want to get what I want out of it, even though I have Ichthyosis. Thank you to Carly, and so many others I have met, or whose stories I’ve read, who show us all a great example of living life and embracing their own unique ‘normal'."

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.


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