From the time I was little, I stood on the sidelines, watching my peers run with ease while every step I took felt like glass shattering underfoot. Little did I know, these early pains were the signs of a rare disease.

In grade school, I dreaded P.E. with every ounce of my being. As I would line up with my peers to engage in different physical activities, I would continuously sneak to the back of the line and hope it would never be my turn to run, kick, throw, or hit the ball. I was thrilled to go to Disneyland with my 8th-grade orchestra class, only to be thwarted by pain and the inability to walk further. Attempts at cheerleading and dance with my friends led to injuries and lingering pain, making me suffer more. By the age of 12, I had suffered ten fractures in my toes, dismissed by my doctors as mere “clumsiness.” Each dismissal by medical providers felt like a dismissal of my experiences, engraving a sense of isolation and misunderstanding.

My adolescence was marked by persistent pain and fatigue—aching and tiredness that rest and sleep never alleviated. Without glaring physical signs, my doctors attributed my issues to common ailments, such as growth, overuse of muscles, hormones, or psychological conditions, such as depression or anxiety. I felt increasingly frustrated, hopeless, and misunderstood by the medical community. A lack of answers left me feeling isolated and without support, turning my burden into a silent internal struggle.

Pure determination drove my young adulthood. I found an intellectual home in psychology and came to appreciate the connection between thoughts, behaviors, and emotions. I built on my resilience and coping skills to listen to and accommodate my body. I pursued academic excellence to learn how to help others facing uncertainties in life.

As an adult, medical appointments continued to feel frivolous until one unexpected visit came with a breakthrough. I recall the doctor’s words, “In the medical field, we are taught that if we hear hoofbeats, think horses, not zebras... Well, you are a zebra.” I had no idea what the doctor meant at the time, but I would come to learn that I have a rare disease. I was handed a large stack of papers with information on my long-awaited diagnosis: hypophosphatasia.

A formal diagnosis brought relief, frustration, uncertainty, and grief. I finally had an explanation and validation of my experiences and, at the same time, disappointment at the years lost to misdiagnosis. Hypophosphatasia is a rare inherited disorder characterized by defective bone demineralization resulting in skeletal symptoms and other systemic issues. I recall thinking somewhat sarcastically, “Great, now what?” I allowed myself to grieve a life without illness briefly, even though, in truth, that life had never been mine. The diagnosis felt heavy because it formalized my struggles, giving them a name and legitimacy while simultaneously highlighting the years I had spent in a fog of uncertainty. The reality of my condition being incurable, chronic, and degenerative weighed heavily on my heart.

My doctors had not heard of hypophosphatasia. I dove into research and patient support groups to learn everything I could about my disease. I regularly found myself educating my doctors about the latest research. For those providers who remained open-minded, the traditional doctor-patient relationship shifted into more of a partnership, where mutual respect and shared expertise were paramount. The experiences of feeling dismissed transformed into being empowered to educate my healthcare providers, which profoundly shaped my commitment to patient care.

Post-diagnosis, I decided to pursue a doctorate in clinical psychology. I conduct psychological health research to examine how individuals think about their ailments and the influencing factors of coping and well-being. I am training to be a psychologist to provide tailored psychological support to individuals and caregivers facing physical and psychological struggles. At the same time, I have used my voice to advocate for others, specifically for appropriate accommodations and increased access to adequate health care.

As a future psychologist, I am committed to building doctor-patient dynamics of mutual respect and partnership so that no patient feels as isolated as I once did. In my own practice, I will seek to provide doctor-patient relationships that ensure patients with diseases and disabilities receive understanding and support, values I have come to seek in my own care.