Rejected to Accepted
Storytelling. What does it mean to tell a story? To share an experience, a feeling with someone? When we share a story, our story, not only do we allow ourselves to become vulnerable, but we allow ourselves to say, “This is my purpose. This is why I’m here.”
When I was diagnosed with a rare cancer, I was undoubtedly nervous and scared. But I knew I needed some type of outlet to release and further explore my emotions. I thought about posting about it on social media, but was afraid of what people would think once they heard I had the “C word.” I thought that they would become afraid for me, and I didn’t want to place my burden on anyone else. This was my battle to conquer on my own. However, I chose to do so anyway. I chose to share my story and chronicle my journey on social media – and I couldn’t have asked for a better response. I received an outpouring of love and support from family and friends who I hadn’t spoken to in a long time. I was given words of encouragement, and was even offered a GoFundMe page to be set up to take care of my treatment.
That wasn’t the end, however. I thought about sharing my story with people whom I didn’t know, facilitating a sense of community for others going through the same thing. I found a company called Inspire, a sort of social media platform/support group for people with different diseases. I connected with the director of communication to ask him about his role. After telling him my story, he directed me to a newspaper in Philadelphia with whom he had a connection and thought I may be able to publish my story there. I was excited to begin, especially with a newspaper! However, after sharing my story, I was told by the editor that, “They already had too many stories like yours in circulation.” “That’s weird,” I thought to myself, “every patient story is different. How can they already have too many?”
I remained determined, not taking, “Sorry, not interested,” for an answer. I researched different cancer blogs and websites online. I came across quite a few and asked if I could submit my story. One or two accepted, and I began to feel the momentum. My story was being published online for the world to see. I continued to find other patient-focused organizations accepting personal pieces, and I continued to be published, including in a print magazine. I also took to Twitter, where I found many patient advocates and advocacy organizations that thrive on storytelling, allowing other patients to feel like they’re not being silenced because they have a disease.
My focus now is continuing to spread my rare cancer journey story as well as other aspects of health care that I’m passionate about, including patient education, research, and health literacy through a variety of different methods and outlets. I continue to network with patient advocates and patient engagement organizations, volunteer with non-profits that focus on chronic and rare diseases, and, of course, continue to write.
Furthermore, the rare and chronic disease space has been discussed, and frankly saturated, with information concerning adults. Advertisements abound for medications that may help control diseases, yet we only see adults featured. I’m not saying this is wrong. However, what I am saying is that we need to see stories from and about young adults with chronic and rare diseases. As I’ve been told before, “Cancer doesn’t discriminate,” but neither does disease. Young adults and teens matter, too. It’s time for the health care industry to take a harder look at young patient advocates, to listen to their stories. Everyone has one; let it be heard. Our Odyssey is allowing for this to happen by facilitating connection and belonging for us and empowering us to be heard.
Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her patient journey on social media. As a result of her health outcome, she looks to advocate for other rare cancer patients through education, research, and health literacy.
Follow and connect with Carly on Twitter: @carlyflumer