By Ally Author Jules Berg
In November, I attended my first AllyCon, a national conference for colorectal cancer patients, survivors, and caregivers organized by the Colorectal Cancer Alliance. This year’s conference was virtual — thank you, pandemic — but I was still so excited to attend!
On the first day, the Alliance held a training to empower us to tell our story effectively for advocacy. They encouraged us to think of our story as our superpower (who doesn’t want a superpower?). And they helped us learn how to harness that superpower to raise awareness about colorectal cancer.
I have always told my story chronologically: I was diagnosed. I had treatments. It was awful, terrible, and very bad. Then the cancer came back, requiring more bad treatments, and so on. Honestly, it left people kind of drained.
Through the storytelling training, I realized I can craft my story for impact. I learned to ask important questions about my journey that could put my story in a different light:
- What makes my cancer story different?
- What impact can MY cancer story have on others?
When I talk to newly diagnosed people, I stress the importance of developing a teamwork framework with their doctor. It became very clear to me during the training that this is an important part of my story.
Jules and her husband Bill during treatment.
As patients, we don't often think of our doctors as teammates. We look to them for answers and to tell us what to do (please). I learned that doctors cannot always do that. I want newly diagnosed people to feel empowered to develop a medical team that they trust, that they can talk freely to so that the decisions that are being made about their care are made from a position of collaboration. I want them to understand that they have more power and control than they feel after they first hear about their cancer diagnosis.
Another “AH-HA!” moment for me was when we worked on "knowing our audience." When I would initially tell my story I would tell it the same regardless of who I was talking to — a blow-by-blow account of my trauma. Thinking of my audience first allows me to edit my story to include effective sound bites that provide the most impact for that audience. Thinking of my audience first gives me a goal and purpose to my story. The goal and purpose of my story is not to list every horrific detail, but to help move people to action.
If my audience is patients, will they have the courage to speak up and advocate for themselves? If my audience is legislators, will they pass laws removing barriers to colonoscopies for younger people? To tell my story effectively, I first need to think about who I am talking to.
Click! It was like a light bulb went off in my head! Of course my story has to change to fit my audience. Prior to this story-telling training, I never prepared my story in advance. Now I had the tools to prepare my story and tell it effectively — that is empowering!
The best part of the storytelling training was listening to everyone share their story and working together to learn how to tell our stories effectively. This provided a connection that I did not think was possible online. Our stories are different, but together a beautiful mosaic comes into focus. We all have the same goal to advocate so that others don’t have to go through what we have and to end colorectal cancer in our lifetime.
Is my story really my superpower? Yes! I tell my story to anyone who will listen:
- Advocate for yourself
- Screenings save lives
- You are never too young
Thank you Colorectal Cancer Alliance!
Julianne Berg is a stage IV colorectal cancer survivor from Virginia. When she is not telling people to get screened for colorectal cancer she is manically baking pandemic bread, exhausting her dog with outings, collecting kayak enthusiasts, and is loving her family as much as possible. You can find her on the Alliance’s private community support groups Blue Hope Nation and Ally to Ally.
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