Advocacy isn't as hard as you think: here's how I make a difference in people's lives by sharing my story with politicians.
Published On: Nov 5, 2020
Last Updated On: Nov 18, 2021
Closing my eyes, the warm sun shined against my skin, the wispy scent of flowers traveled through my nose, and the cool breeze blew my long, dark hair into my face — I wish it was real.
The days of enjoying being outside — which gave me a place to choreograph dances with my friends during school recess — ended in sixth grade, while the yellow microscopic grain during the spring season marched in. With our arms to the sky and our backs slowly arching like the Gateway Arch in St. Louis, my friends and I tried to do backbends in the vibrant green grasses.
Boom! Wincing in pain, I ran to the bathroom stall. I tried my hardest to resist the itch, but the histamine demons already won. I felt trapped in a blazing oven turned to its highest heat setting. My skin burned as the bell rang, reminding me that I had to pull it together.
The rest of the day was a blur. Once home, I gulped down a dosage of prescribed antihistamine and submerged myself in a bathtub filled with cold water.
After that, I sat in the classroom during recess because I was afraid to go outside again. Days turned to weeks, weeks turned to months, and months turned to years. I began to decline our annual family hikes, picnics at the park near the school, and the outdoor obstacle course challenge that my sister and I created.
Eventually, my family stopped going outside altogether. My fears morphed into guilt that I prevented my family and myself from having fun. I started searching online for protective gear, but nothing seemed right. A gigantic umbrella would have to do.
For months, I shook as I gently stepped outside to join my family on nightly walks in the neighborhood. For months, glancing eyes surveyed me, wondering why I was clinging onto an umbrella on sunny days. For months, my skin itched and burned while the histamine demons fought on.
It was not until my diagnosis of anxiety and depression when I realized the extent of control my atopic dermatitis has over me. I am afraid to leave school early because learning is the one thing that makes me feel normal. I am afraid to go out in public without a jacket to cover my arms from the environment. I am afraid to swim in the pool since the chlorine dries out my skin even if I apply layers of Vaseline. I am afraid of my eczema.
Today, I still struggle with going outside and accepting my eczema, but I know other people struggle too. All I ever wanted to do was learn about and discuss other people’s experiences with atopic dermatitis. The first time I met someone with eczema was when I was 12. Then at the age of 16, I met a second person, Ellie*, who is currently one of my closest friends.
In a world where 31.6 million people have some form of eczema in the United States alone, it sure feels like I should know a lot more people with eczema.
I soon discovered the National Eczema Association and their annual Eczema Expo camp, and I realized that there are other teens going through the same experiences. So, to other teens struggling with eczema, you are not alone. We face it together.
Victoria Li is a teen eczema warrior in Atlanta, Georgia.