Posted in Caregiving

Once Upon a Time

Welcome to Caregiver Friday!!

We all remember those four famous words that start every fairytale from our childhood.  We remember the magic and wonder those stories provided and if you were like me you read the stories over and over again.  As we got older we were introduced to books and autobiographies in particular.  These stories told of famous people who made huge strides to overcome adversity in their own lives and the story showed us how we might accomplish the same thing.

As researchers study storytelling (yes, people study storytelling) they found that there is a subset of autobiography called a pathography.  A pathography is a story someone tells about their own illness.   Famous people are writing them all the time about the diseases they’re battling.  These stories bring attention to the illness in hopes of reaching out to those who feel isolated, but also to try and raise money for research and services.  Some of the famous pathographies are written by Michael J. Fox, Montel Williams, Suzanne Somers, Paul Monette, and Lance Armstrong just to name a few.

So what’s missing in the pathography category?  You guessed it; the story of the caregiver.  In over twenty years of serving those facing a chronic or life-threatening illness and their caregivers I’ve only seen a handful of stories written by the caregiver.  Unfortunately, many of them are written after the person they were caring for has died.  Where are all the stories about what it’s like caring for someone on a 24/7 basis.  Isn’t it time that we hear the flip side of the patient’s story so that we get a more complete picture of what’s happening in the arena of health and healing?

You may not believe that your story is worth a book; but I assure you your story is worth telling.  It’s why I believe support groups are so important because the story gets told.  Your voice about your experience becomes part of the collective consciousness and that huge.  So how will your story be told?  Maybe it’s not through a book; video is making big advancements and you can get a personal video recorder for just over $100.  It would be like making your own documentary…that’s powerful.

Start telling your story so that the world knows the illness experience from the caregiver perspective.  You’ll be doing yourself a favor not to mention how it will help those who follow you on this journey.

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