BIG brown eyes and young, smooth skin

in places where people can see,

at least….

Great sense of style,

long hair, bright smile,

She seem fine,

all simply divine,

so you turn a blind eye,

don’t give a care.

But on the inside

where pain lies,

small hurts are magnified.

You ask me why

I lay in bed all day and cry

If you were inn my shoes….

looking good, but feeling miserable,

you’d know exactly how I feel

when I say I am  invisible.

Its truly hard to live with a rare disease, rare meaning…… unusual…. uncommon… not often talked about. That’s why I feel that I live a life of invisibility. Living with a rare disease like Sickle Cell, I don’t often share things like my love for fashion, good books or great movies; the pain that has taken over my life.  I have to constantly explain things, like why I am parked in a handicap parking space, or why I am wearing oxygen. However, I have become a great teacher and advocate due to the lack of awareness for Sickle Cell disease.

We all want to live a life of purpose. Sometimes, it’s those darkest times in our life that we find our purpose. At least that’s my story. It was through my pain that I found my purpose, which helps me to persevere. It’s important to connect with people who can relate to what you are feeling when living life with a rare disease. That’s how you will gain the strength to instill perseverance!

Join our online Facebook Chat Sunday, September 2, at 5:00pm EST. Follow Dominique on Twitter or on her website at

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