This health advocate from Staten Island turned her battle with lupus on its head after falling in love with Korean pop culture.
Six years ago, if you’d told Tiffany Peterson to massage her face with snail mucus, donkey milk, horse oil, and silkworm cocoons, she “would’ve looked at you like you’re crazy.” Now, Peterson swears by skincare products with ingredient lists that read like they could’ve been concocted in a Hogwarts Potions class. She credits K-beauty, as Korean beauty products are known, with improving the severe scarring and acne from which she’d suffered as a lupus patient, and K-Pop, or Korean pop music, with helping her fight the depression that followed her diagnosis.
In 2010, Peterson was diagnosed with lupus, a chronic condition which causes an overactive immune system to no longer be able to distinguish between healthy and infectious tissues. Soon, in addition to symptoms like joint pain and extreme fatigue, she began to suffer from depression. “The doctor just told me, ‘There’s no cure for this disease,’” she says. “‘You’ll have to manage it for the rest of your life with medications until there are other options. Here’s a prescription. I’ll see you in three months.’ I felt I had no support from my healthcare provider.”
After her diagnosis, Peterson went from being “a very social, active, happy-go-lucky person,” the oldest of six children and caretaker of the family, to being unable to walk for a month, and totally reliant on her family for help with basic tasks like eating and using the bathroom. “My laptop was my sole connection to the outside world,” Peterson says.
It was on the internet that she sought the emotional support and lupus education that her doctors had failed to provide. “But everything I read about lupus had a dark, depressing tone,” she says. “Bloggers were just talking about their pain. Each click drove me deeper into a pit of despair.” So Peterson decided to create the positive online support system she felt was sorely needed. She started a blog, Tiffany and Lupus, and Friends Against Lupus, a Facebook community. Soon, people around the world were sending messages, looking for lupus resources and support, or just to say thank you for providing a safe space. Today the Friends Against Lupus community has more than 12,000 members and has won several awards. “It gave me more hope about what my life could be like,” Peterson says.
But in 2012, following an untreated infection that, combined with the steroid Prednisone, led to a temporary but acute psychosis, Peterson was hospitalized for four months. “When I got out, my skin was horrible: I had acne scars everywhere from picking my face in the hospital, a nervous tic. I felt so embarrassed by the condition of my skin and absolutely refused to go outside without a full face of makeup. If you know anything about New York City summers, you know they’re brutal,” she says. “I’m a chronically disabled patient! It’s not as if I could afford to go to the dermatologist for a celebrity skin perfecting procedure! ” Google searches for solutions turned up “all these horrible skin bleaching products.” It was only after Peterson came across “a Filipino YouTuber talking about the wonders of snail cream” named Edward Avila that she found a system that worked.
“Cue the Evil Disney Queen finding the perfect concoction for her nefarious plans because that’s exactly how I felt stumbling over this goldmine of skincare secrets!” she wrote on her blog about K-Beauty. Products like Missha First Treatment Essence, Kojie San, a Filipino soap, Missha-brand snail cream (“Missha Super Aqua Cell Renew Snail Cream,” to be exact), and the occasional sheet mask helped heal her skin (“It’s almost like bringing the spa home, a facial in a pouch”) in a way nothing else she tried had.
Through endless streams of skincare tutorials on YouTube, as well as beauty blogs like The Beauty Wolf, run by a fellow “lupus sister,” Coco Park, and The Wanderlust Project, Peterson became a self-taught K-Beauty aficionado. “There are days when I’m still still like, ‘what am I putting on my face?’” she says. “Then amazing things happen and any hesitations I had vanish. With the help of Asian beauty, I’ve managed to fade all of my acne scars, my oily skin has become much more manageable, my skin texture is so smooth.” She’s since hosted events like “A Night of Luxury, Skincare, and Lupus with SK-II,” with one of Japan’s top leading luxury skincare brands.
If Peterson owes a debt to South Korea for its eccentric skin products, her gratitude would also reach out to the entire country for helping her deal with the psychological ramifications of lupus. Although her acne scarring had improved, Peterson still struggled with depression daily. “After my severe hospitalization, I felt like I had lost so many pieces of myself,” she says. “I was trying to find some creative ways to help me remember the joy I once had in my life after my lupus diagnosis.”
Salvation came in a music video for “Fantastic Baby,” by the K-Pop group Big Bang. “It popped up on YouTube one day. Six boys in heavy eye makeup and the most hypnotizing kaleidoscopic attire I’d ever seen. I was like, ‘What is this? Is he wearing a red weave right now?’ There was so much energy and it was contagious. It reminded me of my past self. I just sat there with my mouth open to the floor, watching video after video. That’s how I found K-Pop. My life was destined to change from that single moment.”
At 30, Peterson is now a healthcare consultant, blogger, and activist advocating for lupus awareness. She’s an ambassador for the SLE Lupus Foundation, the Alliance for Lupus Research, and the Lupus Research Institute, and serves as a panelist in healthcare summits across the country. Her goals for spreading lupus awareness are many, but above all, she wants to teach fellow patients that the disease doesn’t have to consume their lives. Beyond that she aspires to educate healthcare professionals on how they too can increase awareness, education, and improve communication with their patients.
“Life with lupus has been really challenging, especially during my early diagnosis days. I’ve gone through so many life changes, it often becomes difficult to separate lupus from who I am. But it’s just a part of me; it’s not all of me me – as in, I have brown eyes, I have black hair, and also I have lupus,” she says. “Just because I talk about it a lot, doesn’t mean it’s my whole life. I speak about it often because I want others to be aware of the signs and symptoms. There are too many frustrating diagnosis stories like mine. By speaking up I hope to help change that experience for others. That’s why I also share my other interests and experiences in life. When you have a chronic illness, it’s hard to focus on anything else. As soon as you wake up, you’re in pain. You have daily reminders that you’re sick. I’ve learned that it’s extremely important to find something, anything that brings you joy. Whether it’s a new hobby or repurposing an old one so it fits your current lifestyle and is better suited to your needs. It is possible to smile after lupus, I’m living proof of that.”
Photos: Timothy Dollard