I vividly remember the day my sister discovered my first bald spot. My arms were crossed as crisp autumn air blew past me, ruffling the fallen leaves. I eagerly made my way towards the college homecoming parade with my sister and roommates.
My sister, walking behind me, gasped and said, “Sabrina you’re balding!” She shouted it loudly, drawing all the attention of my friends towards me. I quickly averted my eyes to the ground and rebutted by saying it was just my half up-half down hairstyle. My sister helped me cover it up and we moved on to enjoy the parade.
Over the course of a few days, my bald spot grew bigger. I was a bit concerned, but the spot was behind my ear so it was easy to hide. Within a few weeks, the egg-sized spot grew to the size of an avocado. I didn’t worry too much because I assumed it would just grow back. I had had hair for 21 years of my life and it had always grown back.
My parents, however, were much more concerned. They encouraged me to see my doctor. It was only then that I was officially diagnosed with alopecia areata. My doctor shared a personal story about a bald spot she received shortly after pregnancy, suggesting that stress may have been the trigger to my hair loss. She reassured me that my hair would grow back like hers. Her kind, compassionate words almost brought me to tears as I built tremendous hope for alopecia to last only temporarily. She made me feel safe in that office and free of judgement. I left my appointment feeling optimistic, believing my immune system would quit after one bald spot and my hair would return.
I was wrong. As weeks went by, I watched helplessly as a second and third spot appeared on the top of my head. Then a fourth, fifth, and sixth on the back of my head. They appeared until I couldn’t even count them anymore. My stick-straight, black hair fell from my head uncontrollably like the beautiful autumn leaves dying from their branches. With each strand of fallen hair, my hope—just like the leaves—began to die.
For the next couple of months, each day revolved around alopecia. Every morning, from the moment I woke up, I frowned at the pile of hair that fell victim to my immune system overnight. Before bed, I hesitantly stepped into the shower knowing wads of hair would entangle in my fingertips after avoiding shampoo for many days.
At first, alopecia invaded my thoughts. On my way to class, I scanned the rows of people walking by wondering if they noticed my thinning, fragile hair. “That girl walking by is also wearing a hat; does she have alopecia too?” Then, alopecia started dictating what I wore: no white tops (the fallen strands would be too visible against the white) and either a hat, headband, or an itchy wig everyday.
Day by day I disguised myself. Alopecia consumed my entire life as I subliminally began planning my activities and interactions around it. The thought of alopecia never left my mind and its intrusive thoughts only worsened as my hair loss worsened. Eventually, only wisps of my hair were left, literally hanging on by a thread. The reflection in my mirror was a painful reminder that my alopecia was ruthless. When I looked in the mirror, I didn’t recognize myself. I saw someone who looked ill and ugly. I harbored immense insecurity with such sparse hair, so I decided to shave off the last few tufts and posted a picture on Facebook sharing my story.
After publishing my story, I was showered with love and praise from friends, acquaintances, and people I hadn’t talked to in years. It was as if a weight had been lifted off my shoulders, but I still felt like something was pulling me down. People commended me for my bravery, but at the time, I didn’t feel brave. The truth was, I missed my hair. I missed looking like my “normal” self. I wanted so badly for my hair to grow back, but I knew alopecia was unpredictable. There was no definitive cause or cure, and it was possible that my hair might never grow back.
This wasn’t something I could easily wrap my head around. As a biology student, I knew the complicated science behind an autoimmune disease. Learning the scientific background behind diseases was what initially made me interested in pursuing a medical career. I tried to find answers to my questions about alopecia by searching Google, listening to podcasts, studying research articles, reading blog posts, and watching videos, but nothing was straightforward. Each treatment I tried seemed like an experiment, and each was unsuccessful. I felt broken, as if I needed to be fixed, but lacked the tools to do so.
Healing from alopecia wasn’t just about growing my hair back—it was also about accepting that alopecia was a part of me. Without my hair, I still looked like myself because I was myself. I just no longer held on to the agonizing reminder of my consuming hair loss. I no longer had to hide behind a disguise everyday or fear other people’s judgements. Instead, by choosing to abandon my wig, I persevered through the stares of strangers in order to prioritize my comfort and individuality.
Unexpectedly, revealing my hair loss and sharing my experience was incredibly impactful. My story gave others the hope to persevere through their own battles. My disease also sparked curiosity in other people. I received many questions about whether the onset of alopecia was related to my lifestyle choices. Suddenly, it seemed like everyone wanted to offer me medical advice. These questions made me realize that alopecia was often misunderstood, and I felt responsible to help enlighten people on the misconceptions surrounding the disease. With each passing day that I went out in public bald, educated myself or someone else about alopecia, advocated for the alopecia community, or motivated other people to face adversity, I was healing. Every moment where I didn’t let alopecia control my thoughts or actions, I was healing. The actions I took to reclaim my life have made me brave.
My experiences with alopecia, as a reluctant patient, amateur researcher, and informal educator, pushed me in a direction I hadn’t realized: I wanted to pursue a career in healthcare. I will share this experience in Part 2. Stay tuned!
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Edited by Kevin Gibbs