Our Stories

I was thirteen years old when everything I knew to be true both slowly and suddenly changed. What began as one day in pain, one doctor in a lab coat, and one neck brace promising cure, soon became years – of misdiagnoses, of missed weeks of school, of erasure and invisibility in the spaces that vowed care over my body and mind. At sixteen, I was fortunate to have a conclusive diagnosis after three years of searching: Ankylosing Spondylitis. Even with a label to name my suffering, I felt invisible, both because of the unseen nature of chronic disease and my pediatric doctors’ refusal to recognize my diagnosis, due to the fact that I was young and female. Historically, AS was exclusively considered a “man’s disease,” and stigma is still prevalent in diagnostics. Since then, my personal experiences have become inescapably intertwined with my professional experiences as an advocate and artist. I now understand how my narrative represents a microcosm for the broader structural barriers that exist in care.

When I was a pediatric patient, doctors routinely asked me to “rate my pain” on various pain scales, either using numbers from 0-10 or on a continuum of smiley faces. As a child, I struggled to quantify, communicate, and understand my pain with these reductive metrics. Today, these caregiving scales are reappearing themes in my artwork. They highlight the ways in which current tools used by providers to understand their patients’ experiences can be one-dimensional and limiting to care. I juxtapose the Wong-Baker Pain Scale with the McGill Pain Scale to visualize multiple ways in which caregivers assess pain: in emotive faces, or in sensory, affective, and evaluative categories.

Pain Rating Index by Sal Marx

Pain scales are one of many ways that patients are reduced in medical settings. More generally, my art aims to make visible and disrupt these reductions by superimposing both the different metrics used to measure health and the different body parts patients are dissected into. As a person with multiple autoinflammatory diseases and mental illnesses, I have seen dozens of specialists, and have had medical images taken of my spine, my heart, my kidneys, my intestines, and my brain. Often, I feel as if both my diseases and body parts are looked at through distinct lenses. Depending which specialist I visit, each organ or system is disconnected and my body is rarely discussed as a whole. In my artwork, I combine these systems in medical illustratory paintings by reconstructing them as one body: the lymphatic system, the skeletal system, and the muscular system. My work highlights connection rather than separation: between body parts, between diseases, and between body and mind. I hope to make visible what is often unseen and empower other patients to unapologetically tell their own stories.