In our modern healthcare framework, measurable biomarkers of health are standards of care uniformly applied to patients, based on scientific precedent, and generally embraced by clinicians for clarity of diagnosis and direction of treatment. Relying on standards of treatment to match measurable tests - whether weight/BMI, blood tests, ultrasounds, or bone density scans - are widely considered a foundation of effective, efficient healthcare in America.
But what happens when this foundation reveals tiny fissures that lend uncertainly to the stability of the well-hewn structure? For example, when blood test results don’t show anything outside of normal range, despite patients reporting real and sometimes debilitating symptoms; or when a BMI chart places a patient in the “overweight” category, despite recovery from an eating disorder and other positive clinical markers of health. Who are we to rely on for clarity of direction then? The piece of paper showing a concrete data point or the individual sitting in front of us expressing their pain, or their satisfaction? And how can a clinician take both seemingly incongruous pieces of information into account, in an effort to help the patient improve their wellbeing and ultimately, ‘to do no harm’?
These intersections often appear in my work with chronic illness and eating disorders, especially with “invisible” conditions where an individual may appear conventionally healthy with no visible or laboratory signs of ill-health, but still express ongoing physical and mental anguish that prevents them from living a full, meaningful life. I am reminded of Leslie Jameson’s essay, “The Devil’s Bait” on the ambiguous Morgellons disease, and what it was like for her to attend a conference on the condition, not as an investigator for its scientific validation, but as an examiner of patients’ real-life experiences with the condition.
And perhaps that is the key to reconciling these two distinct paradigms: Seeking to understand patients’ experiences as paramount always to the facts on a page. In the end, it is individuals’ unique inner experiences that drive their behaviors, their fears, and their decision-making processes for treatment.
In recent months, the BMI chart has been in the news for its unreliable nature as a predictor of disease states, for all it doesn’t take into account: An individual’s muscular composition, genetic frame, fat distribution, race/ethnicity, history of disordered eating, childhood growth curve, and myriad other factors. In fact, the BMI chart with its arbitrary categories for overweight and obesity was originally developed in Europe in the 1800s by a male for males, for the purpose of establishing characteristics of “the normal man”. Over time, the chart was adopted into Western medicine to use as a “convenient” marker of disease risk, mistaking the quantifiable categories as telling the whole story about a person without any actual information about patients’ lives to support the conclusions.
And it’s not only clinicians who are susceptible to over-adhering to numbers on a scale or lab values within normal limits as solace that all is well. Patients too are often liable to feel physically and mentally sound, with well-established feeding and eating competency tools under their belt until they see a number on a scale that feels dissonant to their lived experience. Or they may be clear on their concerning symptomatology until labs show all-normal results and then begin to wonder if their condition is all in their heads. Numbers and data points often seem to wield disproportionate power to an individual’s authentic experience; it requires far less effort to trust an “authority” than to believe in what are bodies are uniquely telling us and move through a decision-making process accordingly.
This is not to say that scientific test results and measurements should be ignored; far from it. Sometimes it’s more a matter of finding the right tests, especially by asking the right questions, and listening closely to the patient, that leads to more ease and progress in the clinical encounter, and to a much more meaningful therapeutic relationship, one of the primary predictors of the successful treatment.