Storytelling As Medicine
How writing helped me find purpose after diagnosis
Living with a chronic illness is an experience that is both deeply personal and, in many ways, universal. It’s a journey that has taught me the incredible power of storytelling as a means of coping, connecting, and healing.
When I first received my diagnosis, I felt a whirlwind of emotions: confusion, fear, and a sense of isolation. The physical symptoms were just one part of the struggle; the emotional toll was something I hadn’t anticipated. I grappled with questions about my future and my identity. I was in graduate school when I woke up from a nap, paralyzed. My illness not only disrupted my studies, it made me question everything about myself and my future. It was during this time of uncertainty that I began writing about my experiences and discovered the therapeutic power of storytelling.
The Power of Sharing My Story
I started by journaling, a simple act of putting my thoughts and feelings onto paper. This process became a form of emotional release, a way to validate my experiences and feelings. The more I wrote, the more I began to understand my own narrative — not just as a person with a chronic illness, but as someone with a unique story of resilience and strength.
Sharing my story with others was the essential next step that proved to be transformative. I learned the importance of my story after connecting with online support groups where I could share my experiences. The sense of belonging and understanding I found was profound. In these spaces, my story was not just heard; it was felt and shared by others who were on similar paths.
Storytelling as Advocacy and Education
My personal story soon evolved into a tool for advocacy and education. This evolution of my journey was recognized when I was invited to attend the Rare Autoimmune Leaders Workshop, a testament to the impact of my advocacy. At this workshop, I had the opportunity to connect with other leaders, share experiences, and further my understanding of the challenges faced by those with rare autoimmune conditions. This experience reinforced my belief that by sharing my story, I could help others understand the complexities of living with chronic illness. It became not just a personal catharsis, but a means to challenge misconceptions and stereotypes, advocating for better support and awareness.
The Resilience Found in Narrative
Storytelling has unveiled a resilience within me that I previously hadn’t known. Each time I share my story, I am vividly reminded of the obstacles I’ve overcome and the inner strength that emerged as a result. This journey of self-discovery coincided with an unexpected twist: while I was already navigating the transformative path of graduate school, I faced the unforeseen challenge of reinventing myself in the face of a severe and complex medical condition. Diagnosed with a refractory case of myasthenia gravis, accompanied by several comorbidities, my life underwent a drastic shift. Once an avid adventurer who spent my summers on solo cross-country trips, mountain biking, hiking, and immersive research, I found myself confined mostly to bed, struggling with the loss of even simple pleasures like reading, thinking clearly, or watching TV. This stark contrast between past and present highlights not just the physical toll of my illness, but the profound resilience borne from my journey.
Reclaiming my life as it was before diagnosis required years of persistent treatments and surgeries. Amidst this arduous journey, writing became my sanctuary. Whenever possible, I poured my thoughts and experiences on the page, where I found a beacon of hope and a clear path forward. In fact, I am writing this article while receiving my twice monthly infusion. This creative outlet not only guided me toward reclaiming the life I once dreamt of but also became a medium of connection and mutual support. Sharing my story with fellow patients, and listening to theirs in return, instilled in me a newfound courage and determination, fueling my aspirations for a future that transcends mere recovery.
Storytelling evolved into a tool of self-reflection and empowerment, helping me dismantle limiting beliefs that once hindered me, such as viewing my illness as a barrier to productivity (‘I’m too sick/disabled to reliably do the work’). Instead, it fostered an empowering narrative that now defines me (‘I am a writer, an educator, and a researcher’). Through the introspective practice of journaling and the communal act of storytelling, I not only confronted and redefined my limitations but also crystallized my purpose moving forward.
Emboldened by the transformative power of writing in my own life, I began to encourage others living with chronic conditions to share their stories as well.
Among these, Becca’s story remains indelibly etched in my mind. Her battle with myasthenia gravis was even more daunting than my own, marked by frequent hospitalizations and the necessity of a tracheotomy for several months–a challenge I was fortunate to avoid. Despite these hardships, Becca’s journey has been one of remarkable resilience and recovery. Over time, with the help of numerous treatments, she has made a triumphant return to her work as a nurse.
Recently, she celebrated a personal milestone–an anniversary marked by a weekend adventure, walking several miles each day. Witnessing Becca’s journey, her tenacity in the face of such adversity, continues to deeply inspire me and fuels my determination to reach and even surpass my pre-diagnosis baseline.
Encouraging others to write and share their stories did more than just provide them with hope; it profoundly redefined my own aspirations and dreams. This journey led me out of a cocoon of isolation and into a flourishing community, full of empathy and understanding. The stories we shared, each a testament of resilience, transformed into beacons of hope. Their light extends far beyond my personal horizon, offering a shared sense of strength and possibility.
The Transformative Power of Storytelling
My journey with chronic illness continues, an ever-unfolding story, yet storytelling has emerged as a formidable ally. It has not only provided me with a robust coping mechanism but has also enabled me to reclaim and rewrite my own story amidst life’s challenges. This path has uncovered a profound truth: our stories transcend mere recounts of experiences. They are instruments of empowerment, fostering deep connections and facilitating healing.
By sharing my story, my hope is to kindle a spark within you–to encourage you to find and raise your own voice, to explore and harness the healing power within your story. Remember, embedded in every tale of struggle, there lies a thread of hope and perseverance. May you find strength in your story, just as I have found in mine.
If you’re ready to start writing your story, download my FREE Reflective Writing Guide to learn more about the Healing Power of Writing.
