The Importance of Our Stories
Three years ago, when I began blogging about my lung cancer treatment, I was not sure whether I was writing for myself or for others. I had conceived of the blog initially as a simple means to communicate my experience with family and close friends, to let them know how I was doing and what my treatment options were. I figured that it would be easier to just write it once and let everyone who cared to read it at their leisure. Not only would this save me time and ensure everyone was on the same page, but it would also help me to avoid the awkward conversations where I was repeating myself endlessly -- and listening to what I assumed would be a lot of the same responses.
Blogging to Save Time and Energy
Selfishly, I thought that the blog format would save me from personal interactions I might simply want to avoid. I wasn't that I felt like a complete misanthrope. After all, I truly appreciated the outreach and encouragement that many of my friends rushed to provide. But there was a feeling of being overwhelmed that comes with a cancer diagnosis that is somewhat hard to define. The blog offered me not only a way to be open and sharing but also a way to hide if I needed to. And I thought, initially, that might simply be that. Besides, I wasn't sure I would even be around long enough to develop a wider readership.
Still, in the back of my head, even before my diagnosis was complete, I began a series of "what if" trains of thought, pondering how I might use the experience for a story of some sort. Maybe it would fill in the gaps with a novel I had wanted to write since my first year of college. Maybe I might try my hand at a memoir... The idea of being an advocate only came later.
When I realized that much of my personal story was relatable and that many of the stories people had told me about the way my treatment would go were flat out wrong, I had something of an epiphany. The old narrative was wrong. What people thought they know about cancer in general and lung cancer specifically was often heavily influenced by misinformation and a strong misunderstanding of modern medical protocols. Many of the stories I was reading were designed to frighten patients and caregivers, often to steer them toward spending money on something useless or dangerous. And many of the stories I heard or saw were polluted by stigma or filled with despair.
A Shift in My Blog's Mission
My mission with my blog shifted quickly from relating personal information for a small audience to reshaping the larger narrative around lung cancer. Helping other patients and caregivers to feel supported, validated, or more educated about their issues and experiences was a lovely perk and certainly helped me discover a greater sense of community. But an important piece of outreach is harder to complete: connecting with those people not yet directly touched by their own cancer story, or still caught up in outdated experiences of what cancer treatment used to be.
Narratives evolve with time. That is true with stories used to explain any phenomena. As our understanding of things increases, the stories we tell about them are altered to match. This should be the case with lung cancer, but the new understanding takes years to filter down.
But together we can help the narrative catch up to the new realities of cancer treatment. It takes more than one voice, more than one perspective. But if we all talk about it, even just a little bit, our shared experiences will help to wipe away the stigma of lung cancer and help people overcome their fear of treatment.
My personal story might have really been important to only a handful of people. But our stories, combined, are important to the future of patients and caregivers everywhere.
Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.
Have you had biomarker testing done?