Part 2 of my story, read part 1 here!
As the months went by, I ultimately came to welcome alopecia into my life and decided to shave my head. I couldn’t necessarily control my immune system, but I’ve always had control over my self perception. I was able to cut or dye my hair in any style that made me feel confident. That’s why I shaved it, to take back my confidence. It was a statement that I can do whatever I want with my hair. Hair was an accessory—not the dictator of my life—I had the power to control my own thoughts and actions.
After being in the patient’s shoes, it struck me that healing from any disease wasn’t just about finding a cure and treating symptoms. Speaking freely about my battle with alopecia taught me how to confront my disease and made me more aware of the emotional challenges that come with a diagnosis. During treatment, my PA, Ana, was a source of comfort, exemplifying what I learned as a CNA about person-centered care. Ana was patient and understanding, allowing me to voice my values and concerns about the efficacy and safety of each treatment. Her quiet attentiveness and willingness to explore my concerns revived my sense of importance as a patient. My experience with alopecia inspired me to pursue medicinal healing with a humane perspective.
After working with Ana, I began to consider pursuing a career as a PA. I believed this role would be a useful way to apply my problem solving skills and scientific knowledge towards diagnosing and treating diseases. Understanding symptoms, identifying diseases, and providing treatments fascinated me. But more than that, part of what drew me to a career as a PA was my desire not only to care for the physical health of patients, but also to care for all aspects of their wellbeing—including their emotional wellbeing. The Jesuits have a word for this: cura personalis—care for the entire person. My experience with alopecia inspired me to integrate this concept into healthcare to care for my patients as people first and foremost.
Gradually, as I realized the impact I could have by sharing my story, I found formal ways to support and understand others in my position. While coping with alopecia revealed the lonely side of the patient experience, advocating with the National Alopecia Areata Foundation (NAAF) uncovered how therapeutic providing accessible support can be. I became a youth mentor and joined support groups in the NAAF, where I discovered how sharing my story gave children and families affected by alopecia comfort and support. By building relationships through shared experiences and empathetic discussion, I was able to provide some essential emotional support to people who needed it.
In many ways, I want to be the person who I know I needed after my diagnosis. I want to give those answers to people who feel unwell and to fill the same role for others that Ana filled for me. I hope to use my experience to guide me in empowering patients to embrace their diagnosis. My struggle with alopecia illuminated that deeply healing from a disease required acceptance. When I realized that I could have a life that wasn’t defined by alopecia, I found the power to rebuild my sense of character. With this experience, I strive to empower patients to believe that they are not defined by their disease but that they are in control. In control of not only their disease, but also their lives.
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My hope with posting a Facebook picture revealing my alopecia was to encourage everyone to recognize their own bravery. Each person must overcome their own obstacles in life; mine just happened to be alopecia. Alopecia wasn’t a choice, but I made the choice to be vulnerable about my obstacle. I wanted to make it known that each person faces their own journey with unique hardships, and each person is more than capable of overcoming their hardships. Alopecia is not a journey that I enjoy facing everyday, but it has taught me some of life’s most important lessons. Losing my hair out of thin air made me realize that I didn’t appreciate my hair enough while I had it. I complained about its greasiness and flatness, and I was envious of other people’s luscious hair. I was never satisfied with what I had.
Since then, I have fostered greater gratitude for the things that I have now. Losing my hair has also made me realize that the biological origins of a seemingly simple disease can be unexpectedly complex, and it sparked an eagerness in me to learn more about the mechanisms behind the immune system. As I consciously hid my hair loss, I came to realize that many people hid their struggles as well, and as a result, I became more empathetic towards others. Experiencing the unpredictability of alopecia elucidated the emotional challenges that resulted from being diagnosed with a disease. These emotional challenges revealed to me that effective medical care goes beyond simply treating the illness—it requires treating the patient. It helped me discover a compassionate level of care and ignited a passion in me to care for all aspects of others’ wellbeing. Most importantly, my journey with alopecia taught me how to own my disease and embrace my true self. I now realize that wanting my hair to grow back to return to my “normal” life was a false notion. Living with alopecia is my normal life, and I’ve been able to regain it—not by regrowing my hair—but by confronting alopecia and fostering a greater appreciation for my self-worth.
