Why I Share My Story

Can I be totally real with you for a second?

Putting yourself out there into the world is no easy task. Being honest, sharing your truth, and inviting cyberspace into your own little, unique world is an incredibly vulnerable feeling.

What will people think? Are you sharing too much? Are you not sharing enough and giving an inaccurate representation of your life? These are some of the questions I ask myself before I post.

I decided to give this whole writing gig a go back in 2013. At the time, I was a shy, early 20-something just looking to finish out my last semester of college and somehow score a job where its requirements fit my unique needs.

When it came to my story with SMA, I hid that chapter from most people. Sure, the wheelchair, PCAs, and note takers gave me away. But what was noticed on the surface was as far as I’d let people get.

Hospital stays, respiratory infections, and everyday struggles were locked and hidden away for safekeeping. I wanted to give the illusion that for the most part, I was “normal.”

Fortunately, that all changed one day when I hopped on the internet in search of realness. I was on the hunt for real life — everyday, messy stories straight from those who were living with this disease.

To my dismay, I was met with very few resources. At that moment I was prompted to make a change. I was compelled to show up on the internet scene and offer an inside, personal look at what living with SMA is all about. I hesitantly clicked “publish” on my first blog during a bitterly cold day in January.

Truth be told, I had little to no experience in writing as a hobby. And although I’m embarrassed to even admit this, at the time of launching my blog on SMA, I hated to write. (Don’t worry, I’m a changed woman now.)

Yet something inside me said to keep at it. Something deep in my soul was nudging and encouraging me to keep getting vulnerable and to keep clicking that publish button, especially when SMA would rear its ugly head. The more uncomfortable and vulnerable I felt, the more I began to realize how powerful honest and raw storytelling can be.

I think everyone in the SMA community can attest to feeling some level of vulnerability when it comes to sharing their personal struggles. How could they not?

I admire everyone’s strength and ability to expose themselves for who they truly are and what living with SMA truly entails. I admire their rawness and the way they don’t sugarcoat their struggles of heartache and loss. And through every trial and triumph, they continue to show up for others.

These people whom I look up to are the reason why I share my story — despite feeling vulnerable. They are my reason for getting messy and real with my words. Their truths have helped me along my own personal journey as well as inspired me to continue sharing mine.

When it comes to storytelling, I’ve learned that just as there’s a story waiting to be told in all of us, there’s someone who’s in need of hearing it. And I am proof.

So, let’s all celebrate getting comfortable with the uncomfortable and toast to getting our vulnerability on for the world to see. There’s no better time than now to put yourself out there.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.