After the Diagnosis: Finding Words in the Chaos

Receiving a cancer diagnosis is challenging. Finding the words to stutter out a new chapter in your story is also difficult. In our culture of fitness and wellness, what important things does a sick person have to say? Are there keys to communicating your sickness story so people will listen? I believe there are. Today we will talk about the first way we tell our stories: Chaos Storytelling.

Seven years ago:

And then......the doctor tells me he wants to do a biopsy on an area of my breast that has changed since my last mammogram. He assures me it is probably nothing.

And then I get a phone call, saying, "You have cancer."

And then I call all my friends and family to tell them the news. Again and again.

And then I meet with a surgeon.

And then I put a date on my calendar.

And then I meet with an oncologist.

And then I cancel other things on my calendar.

And then a lump of cancer is removed from my body.

And then the margins aren't clean.

And then I have a second surgery with more cutting and testing

.And then I meet with the radiologist and he tells me I can not go swimming or wear a bra during radiation.

And then I go to my car and sob and sob and sob.

And then....

As a person diagnosed with cancer or another chronic illness, the first way we tell our stories is in the overwhelming now. There is no past. There is no future. Just now!

Just now -- with all it's endless information of new medical terminology, treatment plans and surgery dates.

We try to take sips from the fire hose, but feel like we are drowning in the absolute chaos of our lives.

We attempt to make sense of it, by stumbling out words to this chapter of our story, but our sentences are disjointed. We keep getting the order of events confused and have to stop and start again, interjecting thoughts as we remember them.

We are experiencing Chaos Storytelling as detailed in the book, The Wounded Storyteller, by Arthur W Frank. Chaos Storytelling is the story we all tell soon after diagnosis or the diagnosis of someone we love. It is also the story we tell when we have a change in a treatment plan that takes us by surprise or we are hit with news we don't expect and struggle to wrap our brains around the new information.It is the story of "And Then" according Frank.

And then...and then...and then. Chaos Storytelling is the first attempt we make "to put words to an interrupted life."

The problem with Chaos Storytelling is that while the teller so desperately needs to speak the words of this story, the disjointed telling is difficult for the listener to hear, so the listener usually responds in one of two ways.

1. The Fixer Upper

The listener offers unsolicited medical, diet or exercise advice.

"Have you talked to Doctor So And So? He's an expert in his field."

"My cousin's cancer was healed by eating kale seven times a day."

"You need to eliminate all stress from you mind. Yoga would be helpful."

2. Miss (or Mister) Ray of Sunshine

The listener offers a reason for why this happened, sometimes in the form of a platitude.

"God doesn't give you more than you can handle."

"Everything happens for a reason."

"Well, it could be worse." (oh really!)

In both responses --The Fixer Upper and Miss (or Mister) Ray of Sunshine -- the listener is uncomfortable with the unfinished upheaval of the Chaos Story so tries to resolve the conflict the words cause inside of THEM. They offer unhelpful advice as a way to provide an answer and tidy up the loose ends.

Chaos Storytellers will eventually move onto other forms of storytelling, but in the beginning, upheaval, trauma and mayhem are the only words they have to share.

How about you? When you shared a Chaotic Story, did people try to fix your story or give unhelpful advice?

For the next five weeks, I am going to be writing about Keys To Communicating Your Sickness Story. Each Thursday, I will be writing about the following:

If you missed the intro: Keys to Communicating Your Sickness Story.

1. After the Diagnosis: Finding Words in the Chaos - That's This Post!!!

2. Take Back Storytelling: Today I am Sick But Tomorrow I Will Be Better

3. What Luke Skywalker and Frodo Have in Common with Sickness Stories

4. Keys to Listening to a Sickness Story