Although professionally, I was a pediatric oncology nurse practitioner prior to my heart transplant, I write this letter as an individual who lives with long-lasting late effects stemming from the successful treatment of Ewing’s Sarcoma as a child in the late 1970’s along with the daily implications of immunosuppression.
Dear Healthcare Providers,
I write because I am fortunate enough to be surrounded by a healthcare team comprised of individual providers who have partnered with me to optimize my health and wellbeing; providers whom I trust and respect as experts in their respective fields and who trust and respect me as an expert in me, my body, my chronic conditions, and the terrain of my body; providers who heart me because they choose to listen; providers who don’t take my questions as a personal affront, but rather an opportunity; providers who acknowledge their limits [and] know their resources; providers who are invested in me.
I write because my healthcare experience has for the most part been exceptional and I want others facing similar health circumstances to have what I have worked hard to cultivate within my team.
I write because I find myself wondering if it is even possible for others to build such a team given the all too common divide that can develop in the provider-patient relationship and the seeming unwillingness of both parties to listen one to the other.
I write because of tragedies like the death of Jess Jacobs at the hands of a ‘not my problem’ mentality within medical education, and sadly, medicine at large. Lest we think Jess’ case is an isolated incident, consider with me, Paul Kalanithi, renowned neurosurgeon and author of When Breath Becomes Air, who wrote of an encounter with a resident in the final stages of his lung cancer:
“I could see in Brad’s eyes I was not a patient, I was a problem; a box to be checked off; an obligation to be met adding another thing to his to-do list.”
Trust me, if it’s happening to the strongest of self-advocates like Jacobs [and] Kalanithi, it’s a systemic problem.
I write to give voice to the concerns of individuals living the daily reality of chronic illnesses, visible [and] invisible; realities that are different, but nevertheless, real; individuals who have chosen whether by choice or necessity to educate and equip themselves such that they are capable of, indeed committed to sharing in the making of decisions that impact their health [and] wellbeing. These are individuals who are all too often held in such low esteem that their voices are left unheard; their concerns, invalidated; their needs, unmet. They are individuals who you view as problems, but not yours.
I write because not every patient seeks to manipulate you, the system; however, every patient seeks to be heard and responded to in a respectful manner [and] an equally respectful tone of voice.
I write because the utmost desire of most patients is to work with their providers, to forge a collaborative partnership characterized by trust, mutual respect, and a commitment to their best interest.
I write to declare that chronic risks and conditions are a part of who a person is, but they are not the totality of who they are, to declare that chronic conditions are inherently challenging, yet also to declare that they can be handled well across time when compassion and long-suffering are brought to bear upon the circumstance.
I write because we want to maximize our health and minimize the impact of our illness on our quality of life.
I write because we are seeking to be responsible regarding our illnesses and just as you seek to hold us accountable for compliance with recommended treatment, you should expect us to hold you accountable in relation to the way you deliver our care.
I write because in many cases we bring decades of experience, of wisdom to the table of our own care; experience and wisdom that deserves a listening ear and a compassionate heart when we present to your office with a concern, a need.
I write because what you consider chronic complaints or signs of weakness are in fact valid concerns and likely points of great frustration and discouragement to us. If only you could permit yourself to consider what it might be like to walk the proverbial mile in our shoes, then you might taste the salt in our tears.
I write because there are times that we don’t speak up for fear of being dismissed at best, or labeled difficult [and] blackballed at worst.
I write because we have been made to feel small, reduced; we’ve even been mocked in the hallways by you, the providers charged with our care when in fact we are worthy of your respect 24/7/365.
I write because we will not be silenced; we will be relentless in our pursuit of the highest caliber of care appropriate to the clinical scenario at any given point in time.
I write because the reality is that we need you in our lives, Sadly, we are seemingly expendable to you.
I write to remind you that we are more alike than we are different; you could become someone like us in the blink of an eye as chronic illness does not discriminate.
Paul Kalanithi wrote:
“Before operating on a patient’s brain, I realized, I must first understand his mind: his identity, his values, what makes his life worth living, and what devastation makes it reasonable to let that life end. The cost of my dedication to succeed was high, and the ineluctable failures brought me nearly unbearable guilt. Those burdens are what makes medicine holy and wholly impossible in taking up another’s cross, one must sometimes get crushed by its weight.”
I write to assure you that we are not asking you to solely bear the burden of our illnesses rather we are asking you to shoulder the weight of it alongside us instead of across from us, or even worse, looking down on us.
I write because we are your patients, not your problems.
Stephanie Zimmerman, MSN