Sick, Healthy, Other: Art and Chronic Disease
Which comes first, the patient or the disease? I was thirteen years old when everything I knew to be true 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, missed weeks of school, and erasure in the spaces that vowed to care for my body and mind. At sixteen, I was fortunate to have a diagnosis after three years of searching: ankylosing spondylitis. Even with a label, I felt invisible because of the unseen nature of chronic disease.
AS is not a man's disease
My sense of invisibility was exacerbated by my pediatric doctors’ refusal to recognize my diagnosis due to the fact that I was young and female. Historically, a stigma that remains prevalent in diagnostics. Despite newly conclusive diagnosis, I was far from proudly declaring my disabled identity.
I remember the look on my mother’s face when the doctor handed us glossy brochures. I quietly excused myself from the room, and stumbled down a carpeted hallway to the restroom. I remember the long drive home, where I numbly stared at the raindrops streaking across the window. Years later, I wrote a paper about these raindrops, about how the windshield of our car was merely one stop along the infinite lifespan of rain.
My disease as a part of my identity
Over the years that I’ve had a diagnosis, I’ve oscillated in and out of how much I want my disease to be part of my identity. The older I get, the more I understand that keeping it invisible is only doing a disservice to myself and my story, and does little to advocate for the countless others who may lack the privilege of a diagnosis or access to treatment.
I am a white, disabled, queer, non-binary artist. Many years ago, my grandma gave me a small pocket sketchbook. I doodled during the standstill of endless waiting rooms. At the time, art did not feel like a tool, but a momentary escape from my chronic pain. It was not until my senior year in college, that I began to display my work in public spaces as a way of telling my story, and by extension, making my disease visible. Since then, art has empowered me to communicate my illness narratives and advocate for the historically unseen.
The degree to which I am debilitated by my diseases fluctuates over time: there are good days and there are pain days. As such, I often struggle existing within the healthy/sick binary. With invisible co-morbidities that oscillate in symptoms and magnitude, I find myself in limbo, caught somewhere between sick and healthy on any given day. By creating a third option, an “other,” I aim to make this complex identity visible. Sharing my artwork comes with a great sense of personal urgency: to make visible my disease experiences and illuminate the deep health inequities that seep through our healthcare system.
Does reading AxSpA patient stories help you in your journey?