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Why Sharing Your Illness Story Online Might Be a Good Idea

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Do you ever wonder why so many people share their illness stories online via personal blogs, various websites and social media platforms?

Do you ever ask yourself, who in their right mind would share so many personal details of their life on the internet, for crying out loud?

Yeah, me too.

And yet, like so many others, I do exactly that.

My cancer story began with my mother’s cancer diagnosis in 2004. Despite the fact she was diagnosed with an early-stage, low-grade, hormone-positive breast cancer (supposedly, the good kind), it went on to metastasize in 2007. Roughly six months later, she was dead.

Sandwiched in there, we learned she carried the BRCA2 gene mutation. That was in 2006. My family history is complicated. Whose isn’t, I suppose.

While still grieving and still contemplating genetic testing to see if I, too, carried the same BRCA2 mutation, along came my breast cancer diagnosis. I guess you could say, I contemplated a bit too long. I tested positive for the mutation too, btw.

Six months after my diagnosis, I started my blog, Nancy’s Point. Originally, I had intended to blog about grief and cancer from a daughter’s perspective.

Suddenly, I had a new cancer story to share about as well – mine.

From day one, I knew Nancy’s Point would be a blog about cancer and loss. It had to be. For a lot of reasons, the two are nearly one in the same.

I chose and still choose to tell unvarnished truths about cancer and loss, well, my truths anyway. And believe it or not, I have only scratched the surface.

So, why do so many bloggers (and others) share their illness stories online, and why do I share mine?

It’s all about connections. Humans like feeling connected to others going through similar circumstances. We seek out those connections in Cancer Land; too, and when we find them, we latch on to each other and hold on for dear life. Literally.

Following a traumatic event, there’s a desire to do something with the experience. To give back. To give the experience at least some kind of purpose.

Some feel inspired to create whether it be writing a blog or a book, designing jewelry, painting, taking up photography or whatever the case might be. Whether you are the creator, reader, listener or observer, there is nothing like the healing power of art.

Some are driven to change the status quo by turning into fierce advocates traveling the country, or even the world, working tirelessly to make things better and hopefully a little easier for others walking in, or who will someday be walking in, the ill-fitting shoes of cancer, or whatever the illness might be. Advocacy, too, most often begins with sharing stories.

Others need a place to “put” their cancer (or other illness) experience. Writing a blog, commenting on blogs or sharing on social media about your experience offers exactly that – a concrete place to put it.

Besides, everyone needs to vent now and then, right?

And for some, including me, it’s a combination of all the above.

But why am I still sharing my story and the stories of others?

That one’s a bit harder to answer, and after eight years, I sometimes wonder why myself.

I am still at it as much for myself as for my readers

There are many reasons why I keep doing what I do, I suppose. Some reasons, I can put into words and others I cannot.

Most simply put and for now anyway, I can’t imagine not continuing.

Sharing your illness story online makes you more vulnerable, and yes, there is potential risk involved. It’s the internet, after all; so, you need to set boundaries and think things through before sharing such personal matters.

But the rewards you will likely discover along the way outweigh the risk, at least, this has been the case for me.

It’s empowering to share our stories, possibly more than any of us might realize when we do.

The empowerment comes from each person’s process of sharing her/his unique story. But it also comes from the validation so generously offered by those who listen and bear witness to those stories.

Through sharing, we are all stronger.

What better reason to share could there be than that?


 


About the Author

Nancy Stordahl is the blogger behind Nancy’s Point and author of three books: Getting Past the Fear:  A Guide to Help You Mentally Prepare for Chemotherapy, Cancer Was Not a Gift: A memoir about cancer as I know it and Facing Your Mastectomy & Making Reconstruction Decisions. Learn more about them here.

#WednesdayWisdom

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“We are lonesome animals. We spend all of our life trying to be less lonesome. One of our ancient methods is to tell a story begging the listener to say—and to feel—‘yes, that is the way it is, or at least that’s the way I feel it. You’re not as alone as you thought.’”

—John Steinbeck

#WednesdayWisdom

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When you regain a sense of your life as a journey of discovery, you return to rhythm with yourself. When you take the time to travel with reverence, a richer life unfolds before you. Moments of beauty begin to braid your days. When your mind becomes more acquainted with reverence, the light, grace and elegance of beauty find you more frequently. When the destination becomes gracious, the journey
becomes an adventure of beauty.

– John O’Donohue

“Sawa Bona” I See You

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Terry Hershey tells a wonderful story about the northern Natal tribes in South Africa.

They greet one another each day, saying “Sawa Bona,” which means literally “I see you.” Their response is “Sikhona” which means “I am here.”

They are saying to one another, “until you see me I do not exist; and when you see me you bring me into existence. When you see me, I am fully present, I am here.”

​​​​​​​Members of these tribes go about their day with personal validation from everyone they encounter–they are seen for who they are.

​​​​​​​They are a community where everybody is a somebody, and the wholeness of each individual coalesces into the wholeness of the community.

Monday Motivation

A beautiful reflection to start the week with from Bryan Stevenson, a social justice activist, and founder of the Equal Justice Initiative and the National Memorial for Peace and Justice in Montgomery, Alabama.

“I guess I’d always known but never fully considered that being broken is what makes us human. We all have our reasons. Sometimes we’re fractured by the choices we make; sometimes we’re shattered by things we would never have chosen. But our brokenness is also the source of our common humanity, the basis for our shared search for comfort, meaning, and healing. Our shared vulnerability and imperfection nurtures and sustains our capacity for compassion.  We have a choice. We can embrace our humanness, which means embracing our broken natures and the compassion that remains our best hope for healing. Or we can deny our brokenness, forswear compassion, and, as a result, deny our own humanity… But simply punishing the broken—walking away from them or hiding them from sight—only ensures that they remain broken and we do, too. There is no wholeness outside of our reciprocal humanity… Embracing our brokenness creates a need for mercy.”

Expanding Horizons #MIRoadScholars

Our dear friend and Global Village Storyteller, Dr Brian Stork, shared the story with us of his involvement in the Michigan Road Scholars program.  This unique program is a week-long opportunity for a diverse group of faculty to spend time away from their respective campuses and take a deep dive into communities around the State of Michigan.

You can read the full story here and learn more about the journey via Twitter @MichRoadScholar, Facebook, and Instagram.

Saturday Story

When a young girl in an African village heard that her visiting teacher would be leaving their village, she wanted to give her a special gift.  The girl didn’t have any money to buy a present for her teacher, but finally determined what she would do.

She was gone for two days. When she returned, she was carrying the most exquisite shell anyone in her village had ever seen. “Where did you find such a beautiful shell?” her teacher asked amazed. The child told her that such shells were found only on a certain faraway beach.

The teacher was deeply touched because she knew that the girl had walked many miles to find the shell. “Why, it’s wonderful, but you shouldn’t have gone all that way to get a gift for me.” Her eyes brightening, the girl smiled and answered

“Long walk part of gift.”

(Story from Terry Hershey)

The Story of St Brigid’s Day

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Today, 1st February is St Brigid’s Day in Ireland. If St Patrick is our national saint, then Brigid is Ireland’s patroness. Girls were traditionally named Mary or Brigid in days gone by in Ireland and as my own mother was called Brigid, I always felt an affinity to her story.

As a child, I always loved the ancient story of St. Brigid, who I viewed as a beautiful Celtic goddess.  Her father, Dubhthach, was a pagan chieftain of Leinster and her mother, Broicsech, was a Christian. It was thought that Brigid’s mother was born in Portugal but was kidnapped by Irish pirates and brought to Ireland to work as a slave, just like St. Patrick was. Brigid’s father named her after one of the most powerful goddesses of the pagan religion – the goddess of fire, whose manifestations were song, craftsmanship, and poetry, which the Irish considered the flame of knowledge.

Back in my school days we made the traditional  St Brigid’s crosses in class and I would take mine home from school to present to my own Brigid, my Mum.  The story behind St Brigid’s cross is that during one of her travels, St Brigid went to visit a dying pagan chief. As she sat near his bed, she picked up some rushes on the floor and began weaving a cross. When he asked her what she was doing, she told him about the meaning of the cross and this led to his conversion to Christianity.

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His Holiness the Dalai Lama being presented with a St. Brigid Cross on visit to Kildare, Ireland in 2011.

Making a St. Brigid’s cross is one of the traditional rituals in Ireland to celebrate the beginning of early spring. The crosses are made of rushes that are pulled rather than cut. They are hung by the door and in the rafters to protect the house from fire and evil. According to tradition a new cross is made each St Brigid’s Day, and the old one is burned to keep fire from the house.