Maisie Wong-Paredes, mom and caregiver of NEA Ambassador Jeremy Paredes, shares her story about raising two boys with eczema.
Published On: Jul 1, 2022
Last Updated On: Jul 1, 2022
For most people, showers are relaxing. To me, showers feel like needles, raining from the sky.
For most people, beds mean relaxation. To me, beds mean restlessness, bloodstained sheets and a landfill of skin flakes.
For most people, sports are a fun outlet for exercise. To me, exercise comes at the cost of sweating, inflammation and an irresistible itch that leaves my body covered with open wounds.
For most people, school is a place for learning and making friends. To me, school is an unrelenting reminder that because of my cracked skin looking like a festering disease I am treated as an outcast.
My name is Jasmine Hsieh, and I have atopic dermatitis. I was first diagnosed with eczema when I was 3 years old, and I have been battling my skin ever since. Today, I am a 15-year-old high school student living in San Diego, California.
When I was 10, my dermatologist took one look at my skin and recommended hospitalization because my skin was negatively impacting my ability to partake in daily activities; it was affecting my ability to play on the playground, shower, make friends or even just sit still in class. Wounds covered my body, leading to a risk of infection. However, my family’s health insurance did not cover hospitalization and we couldn’t afford it. As a result, the dermatologist prescribed all kinds of steroids that I was supposed to lather over my eyelids, back, knees, chest, heels, midriff, neck, armpits, wrists, shoulders, ankles and elbows. In some parts of my body, the steroids caused my skin to become thin like paper, brittle and translucent to the point where you could see my blood vessels.
Flashback to entering a new school as a 7-year-old: all I wanted was to make new friends. Whenever I approached the kids in my class, they saw my lichenification and excoriations before they saw my glowing smile. They pointed out my rashes and asked me if I had skin cancer and if I was contagious.
Later in that same year, I had a large wound on my neck from my eczema that was encrusted with blood. One of my classmates asked me if I was hurt. I was too ashamed to tell her that it was eczema, so I lied and said that I had an accident in the kitchen. It didn’t seem very believable, but I never wanted to admit that I had eczema – I was so ashamed of something I could not control.
Although rashes covered my whole body from my heels to my face, I felt the most embarrassed about eczema on my eyelids. The inflammation would cause my eyelids to swell up to the size of two cherry tomatoes. The itchiness caused me to scratch off half of my left eyebrow. When I was 9 years old, my skin worsened to the point that a boy I liked turned to me one day and said: “Why is your face so jacked up?”
I will never forget how broken I felt.
During the peak of a flare, I was struggling both physically and emotionally. I asked my parents, “why me? Why do I have to deal with such a disease? Why does it keep coming back?”
I couldn’t handle the pain anymore. One night, I remember crying my eyes out from not being able to fall asleep because of my irritating skin. It was like I was wearing an itchy sweater in the dead of summer that I couldn’t take off my body. Seeing me drenched in tears and bloodied sheets, my older sister whispered to me, “The hardest battles are given to the strongest soldiers.”
After spending so many years feeling insecure about my skin, I have decided that I don’t have to be.
I slowly started to realize that my eczema was not something that I should hide. Instead, the scars on my skin resemble my strength and perseverance through the worst of my flares. The beautiful terrain on my skin represents trophies from the flare-ups I had overcome. I could choose between being insecure about my eczema, or being confident in my own skin. At the end of the day, people will judge me, but I won’t let them get under my skin.
If I were given the option to live without eczema, I would decline it. Eczema has taken a toll on my physical and social life, but it is a part of who I am. Without eczema, I would not be who I am today. Although eczema seems like a curse, it is a blessing in disguise. I learned about self-love and how to be confident. Today, I don’t see eczema was something I should cover up with long sleeves. Instead, I wear my lichenification and discoloration with pride.
Since joining the NEA community, I’ve started working to raise awareness about the 31.6 million people living in the US with eczema. I have built a website to raise awareness, educate and remove the stigma behind this widespread chronic disease.
I found other people in my community that also suffered from eczema and put their testimonies on my website. Reading their testimonies felt unreal. I finally found people who understood what I was going through. I am not an emotional person, but their testimonies made me tear up with pride.
Eczema is a disease that no one can understand fully unless they have experienced it themselves. For 15 years of my life, I have battled this disease by myself. But I’m starting to realize I don’t have to endure this fight all alone. I have found people in my community that are going through the same thing. I have my sisters that will support me no matter what.
I am what NEA would call an Eczema Warrior.
Instead of labeling those with eczema as victims of an integumentary disease, we should be perceived as warriors. Eczema warriors have persevered through their worst flares in times of isolation. Eczema Warriors have pulled through the sleepless nights, constantly resisting the irresistible urge to itch. Eczema Warriors have suffered the feelings of raw flesh, stinging pain and flaking rashes. Every wound symbolizes the physical and mental anguish that we are overcoming. Every rash shows our strength in pushing through hard times. Every scar or discolored patch of leather represents the battles that we have won.
I am an Eczema Warrior. I have won many battles against eczema and will press forward with unrelenting perseverance and pride to win the war.