Storytelling and Your Cancer Journey

By Brenda Busby, Director of Community Engagement

Stories are the bridge that connects us all.  Whether we’re reading stories or writing them, or both, they’re a way to share experiences with others, a way to understand history and a way to feel connected.

As the mother of a melanoma survivor and the Director of Community Engagement for AIM, I am keenly aware of the power of stories to heal and comfort us.

One of the most often requested sources of support that I get from newly diagnosed patients is patient stories. Reading about patients who share similar diagnoses and treatments and who have favorable outcomes is a comfort for many.  Reading others’ melanoma stories allows us to feel a connection and can fill a void left by our diagnosis.  When patients ask questions such as, “What are others experiencing?” and “What has helped others?” they are asking to hear other patients’ stories.

Similarly, one of the most common recommendations I make to newly diagnosed patients and families is to tell their story—whether by writing it, speaking it, or drawing it. I tell them this: When you learn that you or a loved one has cancer, you stop being you for a moment. You’re lost in a whirlwind of words that are hard to understand, fears you didn’t plan on feeling, and emotions so strong they rock you to your core. It’s a loss of control. Telling your story is a way to find your focus again and take back control.  It gets you back in the driver’s seat, by forcing you to think through all that has happened and put into words all that you are feeling. It’s a journey to finding yourself again, even if it’s a self that is slightly different than the one before you heard the news.

Some people find telling their story is an immensely private activity, an opportunity to let loose and share all their secret feelings without shouldering the guilt of burdening a loved one with all that they are experiencing.  This type of storytelling is more for the patient than for an audience; it’s a journal. It is considered therapeutic for the patient, as well as a way to record all that is happening.

Types of journaling might include:

  • Art Journaling: Pages may be filled with drawings, doodles, and sketches. Some people will include photos of themselves and clippings from articles, brochures, and pamphlets.
  • Blogs and Electronic Journaling:blog is just an online journal. Blogs are generally informal entries that read like a conversation. It’s a public space for people to share their own thoughts and experiences and offer words of support and encouragement. They may have an audience, but the writing is personal.
  • Diary Style Journaling: Daily or weekly entries that can be long outpourings or a single line.
  • Recordings: Your phone or tablet likely has a recorder that will allow you to literally “tell” your story aloud.

There is no right or wrong way to journal. And you could be more comfortable doing a mixture of several styles. Finding what works for you is what will be most beneficial for your healing.

Sharing your story with other patients and caregivers can also aid in your recovery.  Sharing allows you to see your journey as a tool to help others, which can be emotionally healing in its own way. I recommend to all patients that they write a short (4-5 paragraphs) version of their melanoma story and include a bit about themselves, their diagnosis, and their treatment, as well as where they are today.  Do it for yourself and save it. You can always add to it as things in your life and in your journey change.  And then share your story with a patient group, a foundation, or even a social media outlet.

People often tell me that they don’t know how to begin their stories, and my advice is to begin at the beginning. When I share my daughter’s journey with melanoma, I always start with “She was two years old, with perfectly creamy unmarked skin.” Because she was, and that is where our story began.

Learning to write your story is a matter of knowing the goal of your story, learning to open up, and being comfortable with sharing your emotions. Making the human connection will make the greatest impact on your audience.

AIM at Melanoma accepts patient stories for sharing on our website. You can submit your story here.  If you have questions or need assistance with sharing your story, please contact me, Brenda Busby, Director of Community Engagement.

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