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How to Use Your Talents to Support Gastroparesis Awareness

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How does an award-winning author for kids and teens end up on a TV news station, spreading gastroparesis awareness? Funny you should ask. It all started, as so many life-changing things do, in middle school…

I was 12 years old when I started writing stories. At first, it was just for fun, plugging me and my friends into made-up worlds and giving us new names and special powers. But as my chronic, undiagnosed illness worsened with every doctor appointment and friendships fell away, I started using my storytelling skills for something else: processing the pain and anxiety in my life. In my novel “Legend of the Storm Sneezer,” I gave my main character Rose a magical storm cloud that follows her around, representing the unpredictable-as-the-weather nature of my health and how it was affecting me.

That 12-year-old girl turned into a 21-year-old debut novelist whose first book won gold in an international book award competition. But a lot happened during those in-between years, not the least of which was being officially diagnosed with gastroparesis at the age of 18. Gastroparesis is a rare and serious digestive disorder that causes the muscles of the stomach to become paralyzed. Symptoms include frequent vomiting, constant nausea, bloating, abdominal pain, and fatigue, just to name a few. Some gastroparesis warriors, such as myself, must rely on tube nutrition like feeding tubes and TPN (total parenteral nutrition) for survival. It’s a daily, hourly, minute-by-minute struggle that needs a serious, dedicated distraction. And for me, that’s writing novels.

When I first began taking my writing seriously, I didn’t want my chronic illness to be part of my platform. I just wanted to be seen as an author, not a chronically ill author. But over time, I began to accept the way that gastroparesis has shaped me as a writer, from giving me something meaningful to do when I was too sick to do anything else to the messages of hope and perseverance prevalent in my stories. And I wanted to share my journey with my readers — to inspire them to face their own challenges with faith and endurance and also to bring much-needed awareness to this life-altering disease.

Think about activism for a minute. What comes to mind? Is it marches on Washington and writing letters to state officials? Those are good, if traditional, examples of activism, but when you’re a chronically ill person, they can sound exhausting — if not utterly impossible. They don’t have to. Activism comes in all shapes, sizes, and opportunities. As a gastroparesis warrior, my energy is limited, and I pour all of it into being a writer. So I asked myself, “How can I, as a writer, spread gastroparesis awareness?” I started by launching a blog series called “Bite-Size Book Reviews,” which features small, bite-size reviews of books, and at the end of each post is an explanation of gastroparesis and how small bites are all our stomachs can handle. In addition, I began sharing about my health struggles on my author social media, both my triumphs and my trials, and what gastroparesis is and means for me. The response was overwhelmingly positive, and as the story of my journey with writing and gastroparesis circulated, my dad happened to share it with someone who works for my local news station.

Before I knew it, I was being interviewed by five-time Emmy award-winning Glenda Lewis for Detroit’s Channel 7 Action News. I was on TV, sharing about “Legend of the Storm Sneezer,” my gold medal, and gastroparesis. I even got to show off my backpack full of TPN! It was amazing, but it doesn’t need to end there. I can, and will, continue using my platform to spread gastroparesis awareness and stories of overcoming adversity. Or, as Glenda Lewis put it, “Just like her main character Rose, Kristiana Sfirlea spends each day turning the hardships of her life into a happy place.” And I want to inspire others to do the same.

For chronically ill people, spreading awareness about our diseases can seem daunting, but it isn’t impossible. Where are you pouring your energy today, and are there ways to spread awareness in those areas? Pursue them. Where you are is where you need to be. Your voice matters, and the world needs your stories of perseverance and hope, always.

This story originally appeared on Kristiana’s Quill.

Originally published: January 3, 2022
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