What's It's Like to Have Chronic Facial Eczema
Yes, it's well-documented that I've always been a nerd.
In the summer before sixth grade, my best friend made me a friendship choker out of woven yarn. She tied it to my neck, and I wore it every day, rain or shine, 24/7. Playing outside. In the shower. While sleeping. I never took it off.
Until one day, I felt an itchiness on my neck—an itchiness so severe that I thought I might be dying. So I ripped off the choker, hoping it would go away on its own. It didn't.
Even though I hated going to the doctor, I told my mom about the itchy rash growing hotter and redder on the skin of my neck. At that point, the natural wrinkles in my neck were angry red gashes—literal weeping wounds. She took me to a specialist.
And that was when I was diagnosed with contact dermatitis—one of the many forms of eczema. I since found out that I have both atopic dermatitis (when your skin’s natural barrier against the elements is weakened and cannot protect you against irritants and allergens) and contact dermatitis (when your immune system overreacts to an irritant that comes into contact with your skin). My eczema flare ups are caused by a combination of allergens and stress, complimented by a hyperactive immune system (probably courtesy of my body being acclimatized to Kentucky—aka. hell for seasonal allergies). During a flare up, my skin's moisture barrier disappears and cannot replenish itself—meaning no matter how much lotion I slather on, my skin can appear dry, flaky, and cracked again within an hour. It's basically like constantly having a second-degree sunburn, except my body has done this to itself.
At 10 years old, the doctor told me I was probably allergic to fragrances, and I had trapped fragrances from my shampoo and soap against my neck when it was soaked up by the yarn of my choker. My body's immune system had reacted by disintegrating my own skin.
Even though it was the heat of summer, I wore a scarf to cover up the gauze wrapped around my neck. I endured weeks of hydrocortisone cream and lotion. We threw away all of my old shampoo that smelled like strawberries, bought special dermatologist-recommended Aveda shampoo that smelled like plants and herbs, and started washing all of my clothes in unscented, free and clear detergent. My neck healed, and I moved on with my life.
For most of my childhood, eczema was just that thing that made me slightly different from my friends. I remember one incident while walking through Bath & Body Works with a friend who didn't know about my allergy, and before I could stop her, she spritzed my arm with perfume. Within minutes, my arm was covered in itchy red bumps. However, aside from a few outlying brushes with a day-long rash, as I integrated perfume avoidance into my routine, eczema became something I never even thought about.
Fast forward to my junior year of college, when I moved to Oxford, England, for my study abroad semester. This was an experience I'd always dreamed about, and as I unpacked my belongings in a dorm room in The Vines, eczema was the furthest thing from my mind. Atopic dermatitis is usually one of those things you grow out of, just like I'd grown out of my childhood asthma. So I didn't even think to look elsewhere for specialty unscented detergent when I couldn't find any in the standard supermarket on my first English weekly shop.
The eczema flare started as a persistent zit on my chin that just wouldn't heal. It weeped through the foundation I used and lasted for weeks. Then, my chin became red and inflamed. One morning, I woke up with skin the texture of sandpaper, my entire face transformed into a blistered, red, weepy mess.
I was devastated. I couldn't cover the reaction up with makeup. It felt like everyone was staring at me. I ducked my head, tried to cover my face with my hands. I didn't I leave my room except to go to the kitchen, bathroom, the drugstore, and my classes for two weeks straight. I often think about the time I missed during this once-in-a-lifetime opportunity of studying at Oxford due to the misery inflicted by the eczema.
This was after I finally emerged from my two week personal hell, got a fresh haircut, and covered up the lingering eczema on my chin (as well as I could) with makeup.
My next flare up was two years later, after I had moved to Minnesota, the day before Spring Break. It began when I noticed my eyes were itchy. I figured my allergies were kicking in. When I woke up the next morning, my eyes had swollen to three times their normal size, the skin of my eyelids bright red. My stomach sunk. I'd hoped the England flare was an isolated incident, but the eczema was back with a vengeance.
The urgent treatment center prescribed me oral prednisone for the swelling, and I drove to the airport to pick up my friend Mary despite the red raccoon eyes. She was coming from Kentucky to spend Spring Break with me in South Dakota in the Black Hills and the Badlands. I knew it wouldn't be pleasant to have the freezing wind buffeting the fragile skin of my eyes, and I'd probably get some stares being out in public with weeping wounds on my face, but I decided then and there that I wasn't going to let eczema ruin this one.
No, I'm not just cold—here, you can still see the lingering effects of the eczema around my eyes: redness underneath and swelling of the lids.
The north and my eczema don't get along. My next flare up was only a month later, at the beginning of finals week. The weekend before, I'd gone to Minneapolis and stayed in an Airbnb, sleeping on a pillow and with sheets that weren't mine. I thought nothing of it, as sleeping in a hotel had never affected me before.
But I woke up with my eyes swollen shut again. This time, the mere contact with the warm summer air was so excruciatingly painful that I spent a day laying on my couch with an ice pack constantly pressed to my eyes. I tried to use hydrocortisone, but it stung so badly that I ended up crying on the bathroom floor. I didn't sleep that night. I used the ice pack to bring the swelling down enough to see, then drove myself to urgent care as soon as they opened the next morning. They gave me prednisone, then referred me to a dermatologist.
The problem with eczema is that there's no cure. It's an autoimmune disease, and like many others, it can only be controlled by suppressing your immune system or avoiding triggers. The dermatologist told me what I've been told many times: it was an allergic reaction to something. This time, maybe the Airbnb sheets, maybe the hydrocortisone I'd tried, maybe the glycerin in my lotion. Once the prednisone reduced the swelling, I went back out to CVS and bought a new brand of lotion that didn't have glycerin in it. I threw away over $50 worth of old lotion and almost all of my makeup, worried they might have contributed to the flare. I spent my last week in Mankato in total misery, packed up my bags, and returned to Kentucky.
The worst part about eczema is how unpredictable it is. On my travels to Wyoming and upstate New York this summer, I slept in hotel sheets (with my own pillowcase) and had no reaction. I interacted with cats, despite my well-documented allergy, to no effect. But then I drove up to Minnesota at the end of the summer during the Canadian wildfires (yes—I have a smoke allergy too) and spent a week in Michigan sleeping with someone else's sheets (with my own pillow and pillowcase, again). My eyes itched like crazy. They began to swell, my skin was covered in bumps, and this time I went straight to urgent care for prednisone. I was lucky enough to catch it early, lucky enough to have health insurance for the third urgent care visit this year, lucky enough to respond to the immunosuppressant.
Kindi was a welcome distraction from the flare up, which you can just start to see on my chin and around my eyes. Look at that puppy tongue!
For some people, like my fiancé, eczema may just be a persistent patch of dry skin on their inner elbow. But keep in mind that for others, their skin journey looks a lot like mine: urgent care and dermatology visits, blisters, anxiety about MRSA infections (common for those with severe eczema, as it creates open wounds), facial scarring, and mental health downturns.
Thirty-one-point-six million people, or 10% of the US population, experience eczema. Aside from those that share my diagnosis of atopic dermatitis and contact dermatitis, there are those who suffer from other forms of the condition, including dyshidrotic eczema, nummular eczema, seborrheic dermatitis, or stasis dermatitis. And according to the National Eczema Association, these adult eczema sufferers feel angry or embarrassed by their appearance, restricted as to what they can eat or drink, and spend up to three hours treating the condition every day. Adults, children, and adolescents with eczema experience higher rates of depression and anxiety. This condition, like other chronic conditions, takes a physical and psychological toll.
For those without eczema: be thankful for your skin and sensitive to those who struggle to maintain even a healthy moisture barrier. Take it seriously when someone with eczema says they can't wear perfume or sit outside by a bonfire all night or drink alcohol (a common eczema trigger). Don't tell someone they are being overdramatic when they say they're allergic to things you didn't realize you could be allergic to—it sucks enough, even without having to convince everyone you're allergic to scented detergent. Know that a support system means the world during a flare up.
For any of you who have eczema: you aren't alone. Know that someone else understands the anxiety over staying at a hotel or walking into a Bath & Body Works. The sleepless nights and four-times-the-recommended dose of allergy medication. The itch and what it feels like to watch your own skin slough off no matter how much lotion you put on it. And know that you are worth more than your skin.