Fighting a Mask

By Sophie Silverman

One morning a few years ago, I woke up with a mysterious mask–– not one of polyester or plastic, but a rash creeping across my cheeks. Nine months and several doctors later, a biopsy finally showed that I had an autoimmune disease called subcutaneous lupus. To me, it sounded like a Harry Potter spell. In reality, to avoid permanent scarring, it forced new rules into my life:

(1) Take immunosuppressant medication daily,

(2) Stay out of the sun to avoid triggering the rash, and  

(3) Always wear sunscreen, regardless of weather.

My medication began working and my rash slowly disappeared, but the “mask” had changed my view of myself. I wasted time comparing myself to otherswishing that I could be like everyone else rather than avoiding the sun and covering-up like a vampire. When people commented on the amount of sunscreen I wore or on my rash, my go-to response became “I’m allergic to the sun” followed by a short description of lupus. Even after my explaining, some people still made fun of my hat and white streaks on my face. Every remark put a lump in my throat. Insensitive reactions added to my shame and led me to hide the truth. I simply stopped sharing that I had Lupus. Lupus became my secret.  

A long-lasting frustration and embarrassment about my condition remained buried within me until Junior year— when I learned the power of transparency and the strength that empathy can give. My attitude began to shift as I felt empowered by a school assembly. Two men from The Innocence Project spoke about how their organization helps wrongfully convicted felons to receive justice. One of these men showed the power of the truth in recounting the story of getting his conviction overturned. His openness with complete strangers impressed me. Listening to him speak inspired my own introspection. I thought about how he did not hide his past, but instead used it to educate others. A few weeks later, as my AP Biology class discussion turned to autoimmune diseases, a stream of questions flowed through my mind. Should I mention my lupus? Would my classmates see me differently? How would they react? As such thoughts bounced around my brain I thought back to the man from the Innocence Project and the impact of his words. I realized that this was the moment for me to be candid about my lupus–– and I hoped that my class would benefit from hearing my story.

And so I began sharing my first-hand experience. As I told my peers and teacher about what living with lupus is like, I felt my nervousness supplanted by confidence. My classmates and teachers reacted with genuine compassion and curiosity, asking me questions like “what does your medication do?” They thanked me for adding personal insight to the lesson. It was as if a weight had lifted, and my layers of shame and insecurity were cast aside. I now see the personal liberation that can come from acceptance and support.  

After I confided in my class, some shared their personal struggles with me. One seemingly carefree student told me about his OCD. We bonded over having hidden our illnesses and lifted each other up through our stories. Authentically exposing my vulnerability had inspired others to do the same.

Lupus does not define me, but my personal journey taught me fundamental truths that I now apply to my life. As a chosen peer leader, I help create a trusting environment in which ninth graders feel comfortable sharing personal issues and family struggles. As a co-teacher of third graders at an after-school program, I emphasize the importance of sincerity and empathy and the unintended impacts of thoughtless comments. I strive to pass on my lessons to those around me. As I teach others, I continue to learn that genuine displays of authenticity and kindness are contagious.

Sophie Silverman, a graduate of Columbia Grammar and Preparatory School, will be a freshman at Brown in the fall.