Writing a Patient Narrative 101

Patient Commando knows how a diagnosis can change everything—from the way your children look at you to how you approach a staircase.

Change is pretty much the number one de facto element of life and embracing it can help with transitions. Although it feels as if you’ve been abandoned in the middle of nowhere, there are thousands of others—everywhere—who are sensitive to the weirdness that’s part and parcel of diagnosis. So why not share your story?

Ken Burns: On Story  What makes a great story? For legendary filmmaker Ken Burns, the answer is both complicated and personal. In this short documentary about the craft of storytelling, he explains his lifelong mission to wake the dead.

It was by chance Patient Commando founder Zal Press discovered the transformative nature of storytelling and how it impacted both the storyteller and the audience.  It’s one of the main reasons we exist: we know every patient has a story. The trouble is: where do you start? Well, since we’re about helping patients help themselves, here are a few simple tips—call it our 12-Step Program, if  you like—to help you capture, celebrate, and share all that goes into living with and managing chronic illness.

The 12 Easy Steps to Writing Your Story

1.  Organize yourself

Set a dedicated time and place to write, be it in your home in front of your computer or at a café with a laptop or a notebook, do whatever you feel works best for you. Set this time aside in your calendar and stick to it. Try and have realistic expectations. If you find once a week too much, then try once every other week. Even once a month is much better than nothing.

2.  Make a timeline

Like a map, a timeline can help you get direction. Just draw a line on a piece of paper, choose a starting date—perhaps the day of your diagnosis—and then fill in some noteworthy or significant events that lead to the other end of the line, which is where you are today. This can help kick start your creative process because it gives you a visual to work from. Starting with a single event allows you to work from within that space and your story will grow outwards from it.

3.  Brainstorm

That’s right, the old grade school classic of letting your thoughts flow freely. Just write or type whatever comes to mind. If your fingers can’t keep up with your thoughts, then use a tape recorder. Don’t worry about how it sounds; just go until you stop. If you get stuck, take a random word and make it connect to your story. Resist all temptations to evaluate what you’re writing (or saying). That’s your critical mind and it will be put to good use later, right now you’re being creative.

4.  Be yourself

In writing, as in life, honesty is everything. The best writing comes from the heart, and when you write about what you know, you write with authority.

5.  Go for the emotions

Give yourself permission to let go and write straight into the emotional centre of your story. It’s all about being present and available for your reader; by doing so you get to the heart of your story.

6.  Use what you have and smile

If you write yourself into a wall, dig up something—a picture, old correspondence, a favourite song—that will jog your memory. Often something funny will arise and—no matter what you’re writing about—try to include it. This helps your reader drop their guard and once that happens, they’ll be truly engaged.

7.  Pay attention to details.

Ideas come through more clearly if they’re supported by details. Just how skimpy was that medical gown they made you wear? And once it was on, how cold was the room they made you wait in for what seemed like forever? Authenticity is what you’re after and it’s better to go too far and scale back later than not have enough depth in the first place.

8.  Pace yourself

You can’t capture all you want to say in a single session of impassioned writing, so take a break, reflect, and then return to your story. Remember: creativity needs time to hatch.

9.  Structure and Research

These two go hand-in-hand in moving your story along. A good story needs a foundation to be built on and setting a structure—no matter how simple—helps the flow of the writing. Remember, it’s a journey and if you have a question, particularly if you’re writing about a subject on which varying opinions ride, do a little research to give your writing breadth.

10.  Use an active voice

A good story doesn’t just tell what’s going on; it shows the reader through words! (see tip #9 on details) So ditch the passive voice and get going! Who are you? You’re Patient Commando and you’re in control of your story!

11.  Ask others what they think

Go to those who know you best—family members and friends—and ask them what they think; they can be indispensible in pointing out what may be missing or what’s unnecessary.

12.  Read your story aloud

This is, hands down, the best self-editing technique out there. Reading your story aloud exposes any awkward spots the moment the words come out of your mouth. Read every word out loud and keep doing so until nothing trips you up. When you get to this point, your story is ready to move to the next step.

What is the next step, you ask? Sharing your story with your intended audience, but before that can happen you need to get started. These tips will help you in your journey and remember: there’s magic in your story telling!

Top Ten Story Ideas

We know, writing tips are all well and fine, but what do you write about? Again, we’ve got your back! For easy reference, we’ve put together our Top Ten Story Ideas List for you, and they are…

  • How I Told My Family and Friends About My Diagnosis
  • Pigments of My Imagination: The First Three Things That Came to Mind When Told My Diagnosis
  • Ch-ch-ch-Changes: Turn and Face the Strange… The major changes in my life—two for the better, two for the worse (N.B. remember it’s always best to end on a high note!)
  • Advocacy 101 or How I’ve Learned to Fend for Myself in the Health Care System
  • Beyond Illness: Things I’d Like My Doctors to Know About Me as an Individual
  • “Honey, I Freaked the Kids!” or “How My Kids (and/or Partner) Treat Me Differently Now”
  • What I’d Do if Given a “Day Without Disease” Card
  • An Unbelievable ER Experience
  • I’m a Caregiver: Who Cares?
  • Seven Highly Effective Habits That Keep Me Working and Feeling Productive

There they are, and it is now official: you can no longer use the excuse “I can’t think of what to write about!” Now that we’ve eliminated that frustration from your life, it’s time to get writing. Remember we don’t want War and Peace or The Cancer Ward, just an entertaining anecdotal story that reflects an actual experience. Everyone—from all of us here at Patient Commando, to fellow patients across the country—is looking forward to reading what it is you have to say.