Lived Experience

“The problem with young doctors,” a GP supervisor of mine used to say, “is not that they don’t know enough or even that haven’t doctored enough – it’s that they haven’t lived enough.”

By “lived”, he wasn’t referring to going bungy jumping in New Zealand – unless of course that particular experience had resulted in being in traction with multiple fractures. He preferred to employ doctors with lived experience of being ill or injured, of having children and, preferably, of caring for a beloved parent or grandparent in an aged care facility as well.   He wanted doctors who really understood what it was like to be a patient and/or the loved one of a patient. To him, a personal health record was far more important than a professional one.

The transformation of doctors by personal illness or tragedy is not an uncommon narrative. Hollywood has used variations of this plot numerous times in films like The Doctor (1991).  On the small screen, many a Grey’s Anatomy, House or Chicago Hope doc has been forever changed by a personal brush with cancer/trauma/addiction/leprosy.

Albeit without the glamour of a Dr McDreamy standing by, I too have been profoundly shaped professionally by personal illness and the loss of loved ones.  These experiences have taught me things that years of medical training did not.

Physical illness has taught me why patients need patience. Experiencing days when it feels like I’m trying to walk up the down escalator has brought home to me why people with chronic illness can get so drained doing “routine” things.

My most valuable lessons though, have come from seeing my loved ones suffer, and from being the one left behind and thus coming to the realisation that a patient’s death is not the end of the story.

As an intern, in 2000, I lost my then partner, Adam, to testicular cancer.  At such an early stage in my career, as a medical student and then a very junior doctor, watching a loved one struggle with and ultimately lose his battle against an incurable disease was particularly influential in my development as physician.

loving memory tombstoneI learned firsthand that treating cancer is so much more than trying to cure. That it’s more than trying to alleviate symptoms when cure is not possible.  I discovered that it is about how whatever life left is lived, and ultimately, how one dies.  This philosophy sat comfortably with me and helped me help countless patients over the years.

Much as I loved and respected Adam’s mother, I didn’t really understand her response at the time. She was in the “chance of cure at any cost” camp, wanting any treatment which had even the remotest possibility of success. This drive persisted even when it became painfully obvious to me and to Adam’s treating doctors that cure was impossible, and that Adam’s aggressive treatment regimens were causing terrible suffering.

But now I get it.  I understand now how maternal love can be so powerful that it overwhelms intellect, logic and fiscal responsibility.  For I too became a mother… and lost a child.

In December 2014, my only child, Amalie, died of neonatal sepsis. It had taken me 9 years and 5 miscarriages to meet her, and our time together was tragically short but will be forever treasured.

When she was in the NICU, fighting for her life, I would have given anything to see her pull through. In those frightening moments, no treatment would have been too extreme, no cost too great.

I thought I understood intellectually why the death of a child is so devastating for a parent.  Now I understand it viscerally, and realise that I had no idea what it is really like.

It is too recent and the emotions are too raw for me to incorporate this “lived experience” into my clinical practice in a meaningful way right now. But I will.  As I have done before.

Adam and Amalie have made me a better doctor.  They’ve made me a better person. I owe them so much.  I can’t pay them back but I am, and will be, paying it forwards.

I think my old GP supervisor would be proud.

First published in Medical Observer, 24th April 2015

 

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3 thoughts on “Lived Experience

  1. Pingback: The other side of the fence | Genevieve's anthology

  2. I read this at the breakfast table before work and as your beautiful words collided with my brain I had a visceral reaction. There is no substitute for well worn experience good and bad. Thank you for such a moving, thought provoking piece with your own humanity and grace dotted throughout.

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