I Have a Rare and Chronic Skin Condition. Does the Beauty Industry Care?
Roughly six years ago, at the onset of my career as a beauty reporter, I penned a personal essay for Yahoo about living with Netherton syndrome, a rare genetic skin condition categorized as an “orphan disease.” It affects fewer than 200,000 people nationwide, and the anomalous malady manifests itself through red scaly rashes, hair abnormalities that cause acute breakage, and a weakened skin barrier that increases the risk for infections.
Netherton syndrome is an inflammatory disorder that falls under the umbrella of ichthyosis—a group of around 20 different skin conditions typified by extreme dryness—and is caused by a mutation in the SPINK5 gene, which prohibits the skin barrier from functioning properly. As a result, my skin cell turnover is expedited twofold and requires me to exfoliate once or twice a day. This leaves my limbs aggressively dry, raw, and vulnerable to external aggressors like pollution, UV exposure, and other allergens known to irritate and age the skin (as well as scary infections like staph, which I’ve had several times).
So what happens if I don’t exfoliate daily? I turn into a walking snowstorm of dead skin. And because my barrier is so compromised, I’m constantly losing water from my epidermis, which makes it extremely tough to keep it well hydrated. To paint a picture for you: I’ll slather on an ultra-rich moisturizer immediately after showering, something like that Cetaphil one in the tub, and my skin will still be cracked and dry as sandpaper an hour (or less) later.
Much to my surprise, the essay I wrote landed on the site’s homepage where it was seen by legions—and not long after that, my inbox was flooded with messages from folks all over the world who had analogous experiences to my own. Strangers with eczema, psoriasis, and other cutaneous conditions praised me for writing so candidly and showing that it is, in fact, possible to thrive despite having a skin disorder. That sense of purpose is what ultimately shaped my writing career, which largely focuses on raising awareness of epidermal issues and advocating for people living with chronic skin afflictions. It’s also what’s kept my head afloat while being neck-deep in an industry that was never designed for people like me.
After graduating college, I moved to New York City with goals of becoming a beauty editor and ended up snagging roles at Teen Vogue and Allure. At the same time, my skin had taken a turn for the worse—a combination of stress and city pollution, and embarking on adulthood, if I had to guess—and despite doing my best to truck along, it was proving harder and harder to put on a brave face, especially without the perennial support I’d received from my parents and friends during my formative years.
Still, working at a beauty magazine turned out to be wholly incredible in many ways. The endless free products at my fingertips and incredible experts I was able to interview are just two examples. Over time, though, certain aspects of the industry started to stick out like a sore thumb. Like how many brands litter their products with meaningless marketing jargon—flippantly using terms such as gentle, soothing, and nonirritating—despite still containing irritants that are too harsh for skin as fragile as mine. I’ve lost count of how many allergic reactions I’ve endured at the expense of products that claim to cater to compromised skin; yet, because they were labeled as safe, I wound up putting the blame on myself.
During this time, common skin conditions like eczema and psoriasis—which affect millions of Americans and people worldwide—were becoming more mainstream topics in the media. Popular, almost. High-profile celebrities like Cyndi Lauper and Kim Kardashian started sharing their experiences with these pervasive skin indispositions on Instagram, which helped to lessen the stigma and spark interest in the subject of chronic skin conditions. Netherton syndrome, on the other hand, was still not making headlines. So I began writing more about widespread skin ailments for the masses. Meanwhile, I felt more isolated than ever. Here I was, writing about these diseases that affected millions, while silently suffering from one that’s barely on the map. Eventually, when people asked about my skin, I started responding, “Oh, it’s like eczema and psoriasis, just a little rarer,” even though I knew this was far from the full truth.
Working in beauty, though incredibly cool, has made living with a rare disease more difficult. You can imagine how churning out stories about how to achieve “clear, healthy skin” might start to weigh on someone who’d inherently never have that. Or how it can feel disheartening that, despite other conditions becoming more normalized and discussed in mainstream media, Netherton syndrome is still fighting to be part of the conversation. Hell, even some high-profile doctors don’t have a full grasp on my condition. I once saw an esteemed dermatologist on the Upper East Side to get some Botox, and when I told them I have Netherton syndrome, they looked back at me with a bewildered expression before recommending a random eczema cream for my “terrible situation.”
The rampant skin-obsessed culture on social media—specifically Instagram and TikTok—hasn’t exactly been the best for my mental health either. Sure, we’ve seen some exciting progression in regard to skin acceptance, with more people posting acne selfies and sharing their skin-condition experiences. But it’s a paradox, because, on the other end of the spectrum, we have skin-warping filters at the ready, and teenagers talking about their retinol routines before they’ve even formed fine lines. Admittedly, I’m complicit in it too. Some days, I’ll shed so much skin I have to vacuum twice, yet what the world sees on my grid is a selfie at golden hour, redness masked with a color-correcting primer and concealer, and no evidence of what my reality actually looks like.
Despite having access to the latest and greatest skincare on the market, I’ve learned over time that no serum or moisturizer—no matter how expensive or smartly formulated it may be—is going to fix my genetic defect. I’ve also realized that skin and mental health are inextricably linked. So when I’m stressed out, my skin suffers the fallout too. Then I get overwhelmed by the state of my skin, and it turns into a vicious cycle of anxiety—a carousel of emotions that can feel impossible to escape.
For this reason, I started seeing a psychodermatologist in the last year, a therapist who specializes in helping people cope with chronic skin disorders. Currently, we’re working on managing my stress, as well as reframing the relationship I have with my skin after all the trauma. I also joined an online community for people with chronic illnesses called Chronicon, which has made me feel a lot less alone in my plight; it reminds me that I’m not the only one battling something daily. The burden of healing shouldn’t be totally on my shoulders though. The beauty industry should adapt too. We’ve seen so much progress in representation and inclusivity, with conditions like acne, eczema, and psoriasis no longer holding the same stigmas they once did. But what about the other 3,000+ skin disorders that still remain on the sidelines of visibility? What about the human beings carrying around the weight of these diseases and the isolation they feel as a result of them?
I’m not naive enough to think that beauty brands will suddenly start formulating products for rare diseases like Netherton syndrome, but I do fervently believe that we can work to create more space and opportunities for people like me to share our untold stories. Real inclusivity goes beyond re-sharing a beautiful photo of someone with acne on Instagram; it also lies in increasing the awareness and representation of lesser-known ailments. It means publicly celebrating all skin—healthy or otherwise.
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