Privilege is deeply rooted

Dr. Becker-Schutte is blogging about an interesting concept she calls Healthy Privilege and it’s inspiring some healthy dialogue.  She explains that ‘healthy people enjoy the privilege of bodies that work in the ways that they expect, free from regular pain or suffering, without extraordinary effort.  Healthy privilege allows healthy people to assume that their experience is “normal,” and to be unaware that coping strategies that work for them will not work for someone dealing with illness’.

Privilege is a tried and true concept with no quick solutions.  Peggy McIntosh’s seminal work White Privilege: Unpacking the Invisible Knapsack  is 25 years old this year.  Her analysis of White Privilege provided a framework for feminists to discuss Male Privilege.  Today, a quarter of a century later we are still debating whether Male Privilege exists, as icons like Sheryl Sandburg and Marissa Mayer make headlines for being a female in male dominated corporate boardrooms.  Privilege is deeply rooted. 

Does Healthy Privilege exist?  Heart Sisters is a blog dedicated to helping women who suffer from cardiovascular disease (it’s a great read) and its author Carolyn Thomas is one of many who have entered the discussion.  She eloquently provides an account of her experience with Healthy Privilege and her attempts to provide real advice and input to 'hypemeisters' who create and promote digital/mobile health devices for those suffering from chronic illnesses.  “It’s been said that coping with a chronic illness every day can in itself feel so overwhelming that being expected to embrace an extra task like self-tracking is simply too much. It’s what Dr. Victor Montori and his Mayo Clinic-based team call “the burden of treatment” in their important work with chronic illness and Minimally Disruptive Medicine. But this reality must sound foreign to those living with the luxury that healthy privilege provides.”

This is a great example that resonated with me as a promoter of digital health solutions and believer in the empowerment of ownership of personal health information.  But does it illustrate Healthy Privilege?

I’m a bit at odds with the term.  While I completely agree that there is a lack of understanding in both the healthcare system and society at large towards individuals who suffer from chronic  illnesses, does ‘Healthy Privilege’ describe the issue?  As opposed to our skin colour or gender, our health will change throughout our lives and it is an extremely broad term that is shaped by multiple determinants.   The majority of us are born healthy and as we age our risk of becoming ill increases.  Most of us, at some point in our lives will experience what it means to be ill, in pain or unwell. 

The lack of empathy described by Ms. Thomas is one I can relate to.  After being diagnosed with malignant melanoma fourteen years ago I experienced one of two reactions from those I chose to confide in.  The first reaction was one of overwhelming concern and belief that the cancer was a death notice; the other was a shrugging dismissal that skin cancer isn’t really Cancer, and that I look "just fine".  The most damaging experiences were those of blame, not just from uneducated friends, but knowledgeable healthcare providers who responded to my need to understand “WHY?” with accusations of sun worshiping and other unhealthy behaviours that I did not participate in and could not defend.  I confided in very few people. 

Where I did find comfort, empathy, support and information was on the Melanoma Patients Information Page.  Despite being told by my doctor not to seek information online, I did.  There I found a community of people who understood what I was going through.  For me, this was enough.  My illness, like the colour of my skin and my gender are only parts of my whole, none define me.  Heart Sisters provides an equally valuable service by connecting women with a common illness and providing an understanding, knowledgeable and comforting community to share their experiences.

Identifying Privilege requires self-assessment.  While everyone could benefit from this, it is important that those who manage the difficult task of informing us when we change from Healthy Privilege to illness take the time to reflect on the concept.  The term ‘bed-side manner’ used to be used (maybe still is) to refer to a doctors manner, attitude and decorum in front of a patient.  Let’s revisit that as a starting place.  Why not a mandatory class in medical school, Bedside Manner 101?  As a second step let’s see some performance measures attached to healthcare providers that measure patient satisfaction with their service.    

In Canada, the CBCs Fifth Estate just released as show called ‘Rate My Hospital’ that examined over 230 hospitals across the country using some traditional indicators and some satisfaction surveys.  Similar to the American CNN movie ‘Escape the Fire’, this exposé focused on educating healthcare consumers and engaging them in the dialogue on solutions. 
  

I can accept the concept of Healthy Privilege as a component of our society, as Ms. Thomas herself stated “until I survived a heart attack in 2008, I too had been fairly bursting with that sense of healthy privilege myself.  I knew nothing about what it might be like to live with a chronic and progressive disease every day of my life – and why would I?”  

What I cannot accept is an autocratic healthcare system, the use of blame to shame healthcare consumers, and poor service when my 50% of my tax dollars are funding a multi-billion dollar system.  Let’s bring the concept of Healthy Privilege into our discussions on how to improve our healthcare systems. Let’s start there.

It’s your health.  It’s your health information.  Manage it well.