PagingDr. Internet, we need a diagnosis. In this series, Mashable examines the online world's influence on our health and prescribes new ways forward.
I'm 28 years old and haven't worn a low-cut shirt since my teens. I avoid wearing bathing suits in the summer. I feel full-on panic whenever I get the tiniest scratch or blemish. Like an estimated 10 percent of people, my body develops keloids, a type of raised scar that forms when excess collagen over-heals itself.
While keloids commonly form on darker skin, anyone can get them. I'm white and I started developing the scars from acne on my chest, shoulders, and back when I was in high school. Experts still don't fully understand why keloids form on some people and not others, but they believe that genetic and environmental factors play a role. Oftentimes keloid scars grow beyond the bounds of an original injury, continue expanding over time, and prove extremely difficult to remove. The scars are a part of myself that I rarely discuss but think about constantly, because the larger they grow, the more isolated and insecure I feel in my skin.
Until reporting this story I'd never even met another person who has keloids. That sense of isolation, of feeling like my experience has never truly been understood, is what inspired me to search for keloids on TikTok. The first time I typed the letters k-e-l-o-i-d into the platform's search bar I let my thumb hover for a few moments and braced for the results, unsure of what I'd discover. I hoped the hashtags and videos I found would make me feel a little less alone. I'm thankful to report they did.
The search brought up nearly 100 keloid-related hashtags, several of which, including #keloid and #keloidawareness, already have millions of views. As I scrolled through the collection of #keloid videos, I was struck by the confidence and fearlessness of strangers with scars just like mine. Rather than covering up their keloids, people on TikTok proudly bare their scars. They use the platform to raise awareness, dispel common keloid misconceptions, and uplift other people with similar scars.
While digital safe spaces for people with keloids exist across social media platforms like Facebook, Instagram, and Reddit, I've found that TikTok is the place to go if you're looking to connect with, learn from, and be inspired by people with keloids, or keloid warriors, as they're often called. After speaking with a few creators who regularly post using the hashtag, I learned that keloid TikTok is just as cathartic for people sharing their scars as it is for people like me, who learn they're not alone.
Sarah Macone, who posts on TikTok as @sarahdawnofficial, is one of several people on the platform sharing informative, encouraging keloid videos on the regular. She documents everything from personal anecdotes to keloid-related TikTok trends for more than 28,000 followers.
Still, arriving at a place where she felt comfortable enough to bare her scars online wasn't easy. Macone, a 32-year-old nanny in Wisconsin, told Mashable that she started developing keloids from acne around age 14. Peers bullied Macone for her scars, which took a toll on her mental health.
@sarahdawnofficial Sometimes it’s more powerful to look at, then to look past ❤️ #LearnWithMe #Sheesh #fyp #selflove #scar #blackgirlmagic ♬ original sound - SarahDawn
"I'd never seen or met anybody with keloids. I didn't even know what a keloid was [at first]. So for a couple years, I was actually very lost. I just knew that I was different, and looked different, and that something was wrong with my skin," she said.
When Macone turned 18, she moved from North Carolina to Nashville, Tennessee, to attend music school. There, she met a group of friends who accepted her keloids. That experience led her to question why her scars were bad, rather than focus on why she was scarred.
"I was like, 'Well, I don't want to apologize for this anymore.' I felt like, 'Why can't I look different, and be different, and it not have anything to do with my value or my worth?'"
Macone first shared her scars on Instagram after a search for #keloids on the app yielded disappointing, primarily negative results. The photos that surfaced strictly presented keloids as a medical problem, one that needed solving. She wanted to show how people could happily live with keloids, and remind others that scars shouldn't define a person.
Once Macone started posting to Instagram using #keloid, people reached out to her, opening up about their own keloids, and commending her vulnerability. Macone said she tried getting into TikTok shortly after it launched, but deleted her account after bullies left negative comments on her first video. Feeling more confident in August 2020, she tried TikTok again and has become part of the platform's keloid community.
A similar journey led Jonelle Demby, a graphic designer and photographer in New York, to keloid TikTok. Like myself and Macone, Demby started developing keloids during puberty, and has gotten scars from pimples, a necklace, a needle, a mosquito bite, and other minor irritations over the years. She began sharing her scars on Instagram, but turned to TikTok (@she.smiles6) and now has more than 48,000 followers on the platform.
@she.smiles6 My #PSA for those with #Keloid #scars. Learn to be comfortable in your own skin. #fyp ♬ original sound - Jonelle
Demby's first keloid-related TikTok, in September 2020, was a PSA that encouraged people who have the scars to learn to be "be comfortable in the skin you're in."
While keloids can be painful, infuriatingly itchy, and, in severe cases debilitating, their impact isn't solely physical. The scarring often takes a heavy emotional toll, which makes the connection provided by digital communities so important.
Like any physical imperfection that deviates from society's unrealistic beauty standards, the raised scars can lower one's self-esteem. But with keloids, the presence and appearance of the scars aren't the only challenges. Their potential to change over time and the difficulty of treating them exacerbate peoples' frustration.
Dr. Sandra Lee, a board-certified dermatologist who's treated hundreds of keloids in her career, explained why these scars are so confounding.
Treatment aims to flatten or reduce the size of a scar and improve its overall appearance, while also preventing recurrence. Some of the many methods include cortisone injections, laser treatments, cryotherapy, and a combination of surgery and radiation. However, these treatments often create new trauma to skin, which in turn can cause new keloids to form.
"So it becomes this sort of vicious cycle," Lee, who you likely know as Dr. Pimple Popper, told Mashable. "The hard thing for people is the loss of control."
Everyone's skin is unique and responds differently to treatments, but the location of the scars matters. Keloids on the ears, for instance, are often easier to remove than keloids on the chest. Flimsy earlobes are a more flexible surface whereas skin on the chest is tighter, making it more difficult to cut and pull together.
@she.smiles6 Reply to @bushwalker.1234 #keloid #scars ♬ original sound - Jonelle
Many people with keloids who come to Lee for treatment are embarrassed by how their scars make them stand out.
As someone who's dealt with growing keloids for more than a decade, I know firsthand how hopeless and lonely the journey can feel. While it's been nearly two years since I've had any treatment, I've tried a number of painful methods over the years that have only made my scars grow larger. Because treatment carries such a high risk of new scarring, some people like Macone, whose keloids don't cause debilitating pain or interfere with mobility, have stopped pursuing treatment entirely.
At a certain point, if treatment isn't successful or noticeably improving your quality of life, learning to live with the scars is the best strategy. That's why I was grateful to discover TikTok's keloid community, which aims to help anyone struggling with them to develop self-love and self-confidence.
I'd be lying if I said tears didn't well in my eyes the first time I watched keloid warriors like Macone and Demby speak honestly and openly about keloid creation and growth, treatment challenges, and their personal romantic relationships on TikTok. The lack of societal awareness and acceptance of keloids makes it difficult to feel comfortable sharing my scars publicly. But seeing people speak about and show their keloids to complete strangers gives me hope for a future where keloids are easily recognizable and widely accepted, rather than a skin condition that people gawk over.
When I asked why Demby thinks sharing her scars online is powerful, she said, "I think it's important for people like you, who are uncomfortable showing your skin. It's like, the more I show mine, the more chances I'm giving to others to show theirs."
For Macone, building community and helping others feel empowered are two major incentives behind her TikTok account.
@sarahdawnofficial To be human is to be beautiful. #TikTokGGT #DontBeSurprised #fyp #scars #human ♬ Fearless Over Flawless - SarahDawn
"It always really touches my heart when someone feels like they've found someone to relate to. I wanted that for so long, and so anytime I meet someone that I can relate to it means something to me," Macone said.
While TikTok has raised awareness of keloids, they've also shown up more frequently in television and film over the past five years. In 2018, Marvel fans saw what appeared to be keloid scars across Michael B. Jordan's chest when he played Erik Killmonger inBlack Panther. While those scars were courtesy of a makeup department and represented self-inflicted markers of past murders Killmonger committed, they still got people talking.
That same year, Dr. Pimple Popper, the show in which Lee treats patients with skin conditions such as keloids, also started to air. The popular TLC show brings information about keloid scars and treatment straight into peoples' households. Lee also uses her social media presence to share keloid visuals and updates with her 856,000 Instagram followers. Dr. Pimple Popperhas 4.4 million followerson Instagram and 13.9 million followers on TikTok.
Lee believes the act of sharing personal keloid experiences — be it on social media or Dr. Pimple Popper— is a powerful way to educate others and remind people with similar scars that they're not alone.
A recent Dove commercial that featured women proudly baring scars (including well-known keloid advocate Bianca Lawrence), was another huge win for the community.
"I think letting people see us and letting us see each other also creates this familiarity. And when you create familiarity it kills fear and judgment, and it allows [keloids] to become common," Macone said of Dove's ad.
While Macone and Demby embrace their scars, even the most confident people choose to cover up sometimes, and feel hurt by negative comments or shocked looks from strangers.
"Everyone's in a different place in their journey, and I always tell people you don't want to rush yourself," Macone said. "But sharing your scars, and offering that gift of vulnerability when you're ready, is so powerful because it brings up connections like the one we have right now."
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