“지우야, 준비됐어?”
Translation: Jiwoo, are you ready yet?
I heard my mother yell from the living room. It was 7:00am. I was supposed to be ready to go and heading to the airport at 6:40am. My hair? A mess. My bag? Almost packed. My eyes? Blurry.
My finger tips? Bloody.
I looked down at my hands, a body part that I had always been insecure about due to my habit of biting my nails. But instead of being embarrassed by the lack of nail growth, all I saw was red. Another flare up.
Just a few months ago, I would’ve been the first in my family to be ready to go. If anything, my inherently fast-paced behavior often prevented me from procrastination. But not being able to use my hands without pain slowed me down in almost every aspect of my life. I couldn’t type quickly. I couldn’t pull my laundry out of the dryer without the loose threads catching on my open skin. I stopped being the crafty one. I couldn’t enjoy the hobbies that once helped define who I was.
Eczema doesn’t discriminate. Across all races, ethnicities, genders, classes, and ages, the skin condition has impacted 230 million people globally. For the first 17 years of my life, I wasn’t one of them. I had gone through a majority of my life without any major skin issues until my first year of college. I didn’t realize it at the time, but it would forever impact the rhythm of my daily life.
From the end of my first year in college to the beginning of my second, the severity of my eczema escalated dramatically. The affected areas were especially challenging: my hands, my arms, my legs, and the most painful of all, my eyes. I could no longer wake up without crust sealing them shut. Keeping them open burned, and the swelling became so intense that I developed a double eyelid on my left eye. I spent hours with a cold compress pressed against them, just to make the discomfort bearable at night. But, the daytime was the hardest. I had to show up and not only be physically present, but presentable. Between 18-hour sorority recruitment days, practices for my extracurriculars, work shifts, and classes, I felt myself pushing through a constant, overwhelming discomfort.
I struggled to find relief in my own skin, not just physically, but especially emotionally. I found myself invalidating my struggles due to the general understanding of eczema within society. I felt almost juvenile using it as an explanation to those around me for my growing reclusiveness. It felt silly to state that something as trivial and common as eczema was increasingly having the power to dictate my life in such an invasive way. It wasn’t the pain of my skin that was brutal, but the hindrance it had on my daily life and doing the activities I loved. It slowly felt like everything was slipping away from my cracked, dry, and bleeding fingertips.
It wasn’t until a year later that I finally had the privilege of finding a compatible dermatologist, that I began to experience relief. I no longer felt like I was just getting through the days, but that I could grab hold of them with my own hands again. Ultimately, we were able to pinpoint triggers and identify the proper solutions and preventative measures. Having a professional that not only validated my pain but listened to the details that were unique to my circumstances, was encouraging and hopeful. It wasn’t long before I found a cream that significantly improved my quality of life.
Yet, I am extremely lucky in my journey of finding comfort in my own skin again. Detailed in an NIH report titled “Impact of Social Determinants on the Burden of Asthma and Eczema: Results from a US Patient Survey,” severe eczema is associated with a lack of insurance, denial of eczema prescriptions by insurers, and the costs of treatments for eczema. In fact, the cream that provided me the most relief (Opzelura) uninsured costs approximately $2,300 to $2,800 for a 60 gram tube.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8784588/
As a result, finding a compatible dermatologist and solution to eczema is not just logistically difficult but often unaffordable and characterized as “unnecessary”. Specifically to those who are uninsured, it has manifested itself to be seen as a privilege despite being a large health burden.
I stated before that I didn’t realize it at the time, but eczema forever impacted the daily rhythm of my life. However, I didn’t include that I now view it as reshaping the rhythm.
I still have my flare ups. I still have cracked skin. But instead of seeing them as moments of defeat, I see them as reminders to pay attention to the systems that prevent accessibility, to the voices that continue to be unaddressed, and to the silent resilience of those with conditions that are seen as cosmetic or trivial. It has shaped how I show up for myself, for how I treat others, and how I manage being uncomfortable. Discomfort is not something to hide from, but as something that can be met with empathy for those fighting their own silent battles. My eczema may have changed the overall sound of my life, but it has also taught me how to listen more closely to my body and to the stories of those who deserve care, empathy, and compassion.