Thursday, June 6, 2013

The Narrative Dimension of Health

I feel inspired today to write about something I'll call "The Narrative Dimension of Health". This is an important, yet mostly invisible, lurker in the room in discussions I encounter on health, illness, identity, and self-tracking.  Attempts to bring it more explicitly to the table would be easier if we had a better shorthand/search term for it. Otherwise it just takes too long to introduce the concept every time.

Humans are creatures of narrative.  Each experience, each interaction, each thought is both filtered through our currently active set of stories and potentially modifies those stories.  We are, for the most part, neither consciously aware of these stories nor actively involved in their curation, but they impact us anyway.  Many agents -- our parents, teachers, friends, partners, religious and civil authorities, marketers, media creators, etc.-- make intentional efforts to impose certain stories upon us.  Other influences are less intentional.  Some of it sticks, some of it doesn't.

Among this set of stories are the ones we tell ourselves about ourselves.  Again, some of this is influenced by intentional efforts to impose stories upon ourselves (such as "positive self talk"), but such attempts may or may not stick and much of it sneaks in via other routes.  The nature of the roles we play in these stories and the way that particular sensations and experiences feed into them have a big impact on us.

Some of these stories address how we relate to issues of "health" vs "illness", "normal" vs "abnormal".  So long as the combination of our current set of stories with our recent sensations, experiences, and personal interactions support us in casting ourselves in the role of "healthy" and "normal", things seem good and we may not think much about it.  What happens though when we start finding ourselves potentially cast in the "ill" or "abnormal" roles?

Identical sensations can have a very different impact depending on how they interact with our currently active set of stories, and which of these roles the result pushes us towards.  The best discussion I've seen of this is in "Upside of Irrationality" by Dan Ariely.  A quote he gives from from a WWII doctor named Henry Beecher sums it up well: "The amount of pain we end up experiencing is not only a function of the intensity of the wound, but it also depends on the context in which we experience the pain and the interpretation and meaning we ascribe to it."

So, what I mean by the narrative dimension of health are the interactions, for a given individual, between 1) their currently active set of stories, 2) the sensations they are experiencing, 3) the stories that various parties, such as doctors, family, etc., try to impose upon them, and 4) how these influences affect the role that they play in the stories they tell themselves about themselves.

The writings of Don Miguel Ruiz and Rachel Naomi Reman have particularly influenced my understanding of how the narrative dimension plays into our experience of life and health.  I read "The Mastery of Love" by Ruiz many years ago when things for me were about at their worst.  I read "Kitchen Table Wisdom" by Reman sometime later when I was starting to heal.  Then just a few days ago a friend in Brussels gave me the book "Teach Us To Sit Still" by Tim Parks, which is what finally inspired me to write this post.

What I'm trying to talk about is pretty much the area overlap between those three books, with maybe some Joseph Campbell thrown in.  They provide a much more nuanced and culturally grounded background than I can give. In "Kitchen Table Wisdom", Dr. Reman gives many vignettes of how this sort of thing has played out in her own life and the lives of other people she's known or treated.  She tells of her own journey both as a doctor, from medical school through the stages of her career, and as a patient, being diagnosed with Crohn's disease and going through the stages of coping with that.  She describes starting out somewhere between oblivious of and hostile to this narrative dimension both as a doctor and a patient, then increasingly understanding and appreciating the importance of it over time.

She teaches that our own narratives need to develop through telling our stories to each other, and points out that the natural opportunities to do so, such as sitting with others chatting around the kitchen table, seem to be mostly drying up in American culture.  She also has a lot to say about the culture of how doctors are trained in the US.  From what I can tell, this training largely tends towards devaluation of the narrative dimension of patients' experiences and treats it as a barrier to be overcome in order to achieve "patient compliance".

Yet, all our interactions with the medical system do impact us along the narrative dimension, whether we acknowledge it or not.  I would argue, and I think Dr. Reman would agree, that we would do better to be more explicit in our acknowledgement of those interactions.  Impacts of health-related experiences and pronouncements on the narrative dimension can be as significant and real as things that more directly and measurably affect the physical and biochemical dimensions, for good or for ill.

This issue is particularly relevant in situations where we find that we can no longer square the officially sanctioned go-to-the-doctor-and-do-what-he-says approach with our own experience of what's going on.  Do we meekly accept the roles that dead-end labels cast us in, despite the continued experience of illness-like suffering?  Or, do we keep looking for something else that resonates better with our stories, experiences, and sense of self?

The first half of "Teach Us To Sit Still" by Tim Parks is the most detailed first-hand account I've seen of someone becoming aware of this narrative dimension and then writing about their journey.  As he comes to realize, "Every illness is a narrative.  What matters is the version you tell yourself."  The version he tells himself changes over time, and he shares with the reader the ways in which those story shifts occurred.

Tim has been experiencing pelvic pain and increasingly frequent and disruptive nighttime trips to the bathroom, and finally decides to try to do something about it.  His friend Carlo is a urologist, so he starts there.  From talking to Carlo and the doctors Carlo refers him to, Tim expects that his problem is an enlarged prostate which could be treated by routine surgical procedure called TURP.  However, after going through the chain of diagnostic tests, the straightforward prostate story breaks down.  The doctor eventually tells him that he sees nothing dramatic and "If Signor Tim had no symptoms, I would say from these X-rays he was perfectly fine."

On the one hand, the normal-looking prostate is good news.  However, it leaves him adrift to explain or address his continued pain and urinary problems.  The doctors want him to do the TURP surgery anyway, but Tim is no longer convinced it would help with his symptoms.  The dominant stories plaguing him now are variations on the theme of it's-all-your-head.

Tim visits India for a conference and, while there, consults an Ayurvedic physician.  He asks the doctor if he thinks Tim's problems are entirely psychosomatic:

A slow smile spread across the doctor's face.  'That's not a word we have much use for, Mr. Parks.'   
I looked at him.   
'You only say psychosomatic', his wife explained, 'if you think that the body and the mind are ever separate.'  
It was a fair point."

The looming acceptance of the "psychosomatic" role had felt devastating in the context of the default set of stories that our culture feeds us about health and illness.  Until this point, the only defense Tim had had was a definitive diagnosis of something else more respectable.  The alternative story the Ayurvedic doctor and his wife offered resonated for Tim and made a big difference in getting past that hurdle.

A similar turning point happened in my own journey.  Just as the options offered by following the go-to-the-doctor-and-do-what-he-says approach through the tree of tests ordered and specialists consulted had clearly hit a wall, my primary care physican, Dr. Manoukian, went off the usual script.  He had a bit of training in Ayurvedic pulse analysis and noticed signs of what, in that system, was called "vata imbalance". He told me a bit about it and sent me off to learn about Ayurveda.

Even though it took a while of following that path before the physical sensations were much different, the immediate shift on the narrative plane was huge.  I went in resigned to accept the devastating "labeled as psychosomatic" role, and walked out hopeful about learning how to address vata imbalance.

Later on, after months of paying attention to what I ate preceding setbacks while following the vata balancing protocols, I became suspicious of nightshade (potato, tomato, peppers, eggplant, etc.).  Strictly avoiding them led to further improvements in my health, and to a new mission to build tools to help people going through similar situations--what I initially called "Human System Debugging."  Eventually that led to encountering others who had experienced similar sorts of transformations through self-tracking, and involvement in the Quantified Self (QS) movement.

This "narrative dimension of health" concept is very relevant to QS/self-tracking.  In this framework, what I think is going on for a lot of folks doing self-tracking is the following: they recognize and are bothered by some persistent discrepancy between their currently active set of stories and their sense of what they're actually experiencing.  Gathering data and reflecting on it allows them a new way to compare the expectations generated by their current stories to specific concrete instances they've recorded, potentially allowing them to generate and/or vet new stories that might work better.

In my case, adopting the Ayurvedic vata balancing story and the strategies that flowed from it led to better results than the earlier ideas.  However, I was still bothered by the persistent discrepancy between the setbacks I experienced after certain meals and what I would now expect.  The process of paying attention to and reflecting on such discrepancies eventually led to the new ideas about nightshade, and confirmed that efforts to strictly avoid them did seem to lead to even better results.

QS provides both 1) a social framework in which to engage in such explorations and feel like it's a normal, ok thing to be spending time on, and 2) other people who we can tell the various drafts of those stories to, and hear theirs from them.  This allows us to move closer to the role of an active agent in crafting our own narratives, and farther from the role of passive victim of whatever stories have been foisted onto us.

I hope this is helpful and resonates for some enough to enrich the discussion.  :)