I don’t know why it’s so hard to believe I’m allowed to have a voice. Actually, believing I have a voice isn’t the problem. Its believing I have a voice worth listening to…that’s where I struggle. Believing that my experience has value to others and that sharing it can help others is a little mind-blowing to me.

I grew up very stubborn (my mom just burst out laughing). I had no problem voicing my opinion, particularly when it was contrary to a parent. A trait neither of my parents appreciated. Ha.

Eventually, I learned sometimes screaming your opinion doesn’t convince people you’re right (who knew?!). And so I shut up. Literally. I just stopped sharing my opinion. No one seemed to care what I thought, so why even bother? If there was a group of people talking, I was generally ignored, talked over, put down, or interrupted when I spoke up. So I just stopped. Even now, if there’s a group of people, I probably won’t say anything, unless it’s my family or very close friends. 

Earlier this year I stepped WAY out of my comfort zone and went to the Rare Disease Legislative Advocates conference in Washington DC where the whole point was to share my story with members of Congress and their staffers. WHAT THE HECK WAS I THINKING?! 

As terrifying as it was, it was also incredibly empowering and liberating. I met incredible people using their voices to make actual changes in their home states that impacted real people. I was partnered with an older gentleman that was also from Utah, and we were grouped with three incredible mothers from Las Vegas who created organizations to support the Sickle Cell patient community in Nevada. 

Watching these 4 individuals share their stories of how they’ve taken the hardest things life has thrown at them and they’ve turned them into a crusade to benefit others was awe-inspiring and powerful. 

I was also able to meet other people with the same condition as me! It was amazing! And we bonded over our bodies’ mutual disdain for direct sunlight and chlorine (swimming is generally a no-go for me, lol). 

My story matters. Sharing my story matters too. 

Your story matters. Sharing your story matters too. Find a platform to share your story. Maybe it’s telling your kids (or nieces and nephews) verbally about your grand adventures as a child to them as they fall asleep at night. Maybe it’s a scrapbook or photo album. Maybe it’s a Facebook post, a blog, an online video. Maybe it’s a private journal. Maybe it’s shouting it from the rooftops. 

The how doesn’t really matter. What matters is that you share what makes you, YOU. Share what matters to you. Share why it matters. 

Actually it was this conference and sharing my story that reminded me how much I’ve missed sharing. That I’ve missed having a blog. A place to tell my story. Share my triumphs and hilarious missteps. So here we are. 

I am here. 

I have a voice. 

And I’m going to share my story.