Sharing Your Personal Story

Epilepsy News From: Monday, August 24, 2015

Our lives are our personal narrative. Imagine history if no one shared a story or wrote it down. There is power and influence in sharing one’s personal story. When you think about your story as it relates to epilepsy mortality, you might say to yourself, “I could never do that, I don’t want to scare people.”

In this month’s article, I hope to convey the importance of all of our stories and leave you with some tools and insights that will help encourage exploration of your own story, and possibly sharing it with others.

People will forget what you said, people will forget what you did, but people will never forget how you made them feel. -- Maya Angelou

How can writing a story be useful to me?

The process of telling your story can give structure to your life and help identify your reality. This can help you reconstruct a shaky identity following a major life altering event, a diagnosis or a death for example.

Seeing your story in front of you or hearing your own words can inspire you to take action, make choices, and make change with the help of others. It can help you remember by engaging your heart and head, bringing together analytical and emotional elements. We experience our values through emotion. When people struggle emotionally and our world as we knew it is forever changed, values can become unclear. Getting our thoughts and feelings out into the open, sharing them with others, can clarify what we believe.

Dr. Robert Niemyer, a constructivist theorist (this is the theory that knowledge and meaning come from experience), talks about using “Narrative Medicine” in the context of grief therapy. Writing or telling your personal story is a way to process, make meaning, or make sense of a life drastically changed by loss. Voicing our concerns can validate and legitimize our ongoing search for answers.

One can gain mastery over difficult life material when given the opportunity for social validation. We may be embraced with sympathy and empathy that may not have been felt from others previously. This can help counter act “avoidance coping” when we feel support is lacking. All of this can help meaningfully integrate a loss into one’s life narrative.

How can writing or telling a story be useful to others?

People love to read other’s stories. Stories are a lived experience with the power to move others to action, often through shared values and emotion. Generating change and motivating others through your story can give meaning to one’s life, both yours and your loved one’s life.

Stories often give a human face to a complex issue, helping an audience understand it. Not only is writing a story healing to the author, but reading it can validate the feelings of a reader who has experienced a similar situation.

Healing comes from social support. Instead of feeling we are suffering alone, we may find others who are also suffering. In the grief arena, it is often stated “grief shared is a grief lessoned” (author unknown). This creed is certainly a model for The Compassionate Friends support groups, as well as many other support groups.

Sharing pain can actually result in the development of greater compassion for human suffering. Bearing witness to pain can be very empowering and contrary to the thinking that this puts either the giver or receiver on a “pity pot.” Resist holding back and be honest and forthcoming with your feelings as you share your story.

You may be asking, “What about the people who have not experienced a similar loss? How will they connect with my story? Won’t it just scare them?” I recommend always giving others the choice to read or listen to your story. Some may not be ready, but others may be changed or helped by your experience.

Also, think about your intention. Is it truly to scare another person or is your hope to empower them?

  • Perhaps you are reminding them to value the precious moments and people in their lives.
  • Perhaps you are giving them information you wish you had. 
  • Perhaps you are telling them about tools they can use.

As you think about your story, consider ways to tell it so you give people power to take action in their own life.

How do I get started?

Think about a story that moved you and how the author drew you into it.

  • Did he paint a picture with his words of a person, place, or time? 
  • Did she engage your senses?
  • Did she appeal to a universal feeling we all share?
  • Did he leave you with a clear message at the end?

Think about your intentions in telling your story.

  • What is your message? 
  • What feeling do you want to leave with readers and how can you invoke that feeling?
  • Put yourself in your reader’s shoes. What would make you take action to do what you want readers to do? 

Read the #DareTo stories shared by others, as well as the story I wrote in 2005 about my daughter Carei, for inspiration and for connection.

Ask yourself, “Am I inhibited by inertia, fear, self-doubt, isolation or apathy?” The process of moving forward to share your story can be aided by a sense of urgency, hope, knowing you can make a difference, solidarity with others, and even anger.

Now just start writing, you can do it!

Share Your Story

I have had the privilege of bearing witness to the personal stories of many. I have seen the power and personal transformation that comes from taking the journey from grief and loss through meaning and making sense of one’s story to reconstructing one’s life. This journey takes courage, and hard work.

We are all shaped by our life experience and we all have a story to tell. Sharing our stories is a way to connect with others, to remember, and to reconcile a difficult experience into our life, the very being of who we have become.

Richard Stone, the author of The Healing Art of Storytelling, says, “Without stories, life becomes a book cover without the pages — nice to look at, but not very fulfilling.” I hope you will consider sharing your story with others.

Linda Coughlin Brooks is the SUDEP Institute Bereavement Support Facilitator; she contributes regular articles as part of our bereavement support services. You can contact Linda at sudep@efa.org. Watch for future articles and learn more about our support for bereaved.

Authored by

Linda Coughlin Brooks RN, BSN, CT

Reviewed Date

Monday, August 24, 2015

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.