- Becca Butcher posts about life with the rare condition Poland Syndrome on social media.
- Butcher aims to normalize chest deformities but sometimes feels pigeonholed by her platform.
- Online communities can offer crucial support and resources for those with rare conditions. It can also be overwhelming for creators like Butcher who fill in healthcare gaps.
Becca Butcher didn't plan to become a 25-year-old de-facto activist. But it happened anyway.
Butcher, who has Poland syndrome, a rare condition that typically results in an absent or underdeveloped chest muscle on one side of the body, started posting about typical 20-something interests — travel, makeup — on TikTok, where her largest audience lives, about three years ago. But, as viewers began to notice Butcher's visibly differently-sized breasts, and she responded to their inquiries, she also found that videos concerning Poland syndrome accrued exceptionally high views.
So, she made more of them. Some of the videos topped 10 million views. Since then, she's covered topics that range from when she first spotted a difference to criticisms of traditional beauty standards.
As her views ticked upward, so did Butcher's followers. She'd grown up with a dearth of images of people who looked like her, and she felt gratified by the possibility of doing something meaningful.
"The more I posted about it," Butcher told Insider, "the more people told me it helped them. Lots of women said they have the same chest and had never seen anybody who looked like them before or heard anybody talk about it — they didn't know it had a name."
Butcher didn't receive a diagnosis for years.
Butcher noticed the difference in her body at 13 and, at 17, after years of being told her smaller breast would eventually grow — "doctors kept saying 'every woman has one bigger than the other,'" she said — she found the term "Poland syndrome" on Google and brought it to her doctors. At 20, she received a diagnosis.
Poland syndrome is rare. Experts believe it could affect anywhere from 1 in 10,000 people to 1 in 100,000 people, though the numbers could be higher with undiagnosed cases. And, as is often the case with rare conditions, people with them often face hurdles in receiving a correct or timely diagnosis. Once they do, they might struggle to create support networks and access resources that help them map out their future.
Butcher told Insider that when she first started visiting doctors for her condition, they would look up the condition on the computer during her session, only to find mainly news featuring her. "All they were finding were articles about me," Butcher said. "So I was the one kind of educating them whilst sitting next to them, and they're reading about me on the computer."
Butcher began posting about her condition in the hopes of finding others like her.
Initially, because the only information Butcher found online centered men with the rare condition, Butcher told Insider she felt embarrassed, thinking she had something "that only men could have." Initially, she wanted to hide her condition. But, eventually, she decided there had to be other people like her.
That year, she began uploading posts to Instagram, like little homing beacons, trying to attract other women like her to her page.
"If I can't find them, they hopefully can find me," she said.
Now, she's a highly visible representation of a body type she was once unable to find online.
Years later, women with Poland syndrome often ask her to weigh in on the pros and cons of implants or confide in their own pain ("if a man sees my chest, they're not going to like me anymore," or "I've never kissed a man, I've never had a date" or "I'm too embarrassed to tell anyone"). Parents of newborn children with Poland syndrome asked her to help them picture the future and the challenges they should prepare for. Butcher told Insider she typically directs inquirers to PIP, a UK Poland syndrome charity for which she's an ambassador.
Butcher, who chose not to get a breast reduction or implant surgery, is also grateful for the opportunity to represent an alternative decision to the one commonly provided to people, particularly women, with Poland syndrome.
"I didn't want to have surgery," she told Insider. "I just didn't feel like I needed it."
Butcher's chest deformity most drastically inconveniences her when she's at the mall — shopping for swimsuits and bras. But for her, that isn't a compelling enough reason to undergo surgery, despite the fierce social pressure women face to conform to narrow beauty standards.
And while many people treat surgery as an "easy fix," Butcher told Insider, it's not always the case.
Butcher has become a confidant, advisor, and mouthpiece for others with the syndrome.
"I've spoken to a lot of women that have had surgery and ended up having complications," Butcher explained, "because putting a fake breast on top of a deformed muscle means it doesn't always sit properly. And doctors didn't warn them that that was a problem that could happen, so they didn't realize that ruptures or the fake breast coming loose was a risk." At their request, sometimes Butcher will share these stories with others as a cautionary tale.
For Butcher, the decision to have surgery or not is up to each individual — "if it''ll improve your life and make you feel better, do it," she said. On TikTok, Butcher sees her role as simply giving people a more complete picture of their options. "People have told me they were going to have surgery because they didn't realize they could just live with Poland syndrome," Butcher said.
Kim Daybell, a doctor and former Paralympian with Poland syndrome, explained that the challenge for Poland syndrome patients is that surgeons are typically the main medical professionals they interact with — "There are no tablets to take for Poland syndrome," Daybell told Insider. "Plastic surgeons are the ones managing Poland syndrome in the healthcare system because the only medical management for it is an operation."
Online communities can help fill gaps left by the healthcare system. For creators like Butcher, they can also place unnatural pressure on the individual.
In the absence of highly visible, accessible medical care and support groups for rare conditions, online spaces can take on outsized meaning for those living with the condition.
But unfortunately, Butcher says her TikTok feels less like a creative outlet and far more like a job.
Lately, she's been trying to represent other aspects of her personhood on the platform — her love of photography and videography, fashion, and travel — but "it doesn't seem like anybody wants to see those things, even though that's what I want to share with people," she told Insider.
Originally, Butcher meant for her TikTok presence to normalize chest deformities and — some would say, inherent to that mission — to represent her as a well-rounded person who exists outside of it. Unfortunately, Butcher's most effective tool of liberation may also have inadvertently pigeonholed her.
Butcher feels motivated by her platform's possibility for good — but she also feels overwhelmed by its scale and her own sense of obligation to her followers. She started sharing on social media because she didn't want "anybody else to ever feel as lonely as I did," but her followers span the globe, and she's only one person.
"There's so much pressure to help somebody," she said. "A few people have messaged me saying, 'help me. If you don't help me, I'm going to end my life.' And it's way too much pressure to put on somebody."
"I want to help people," Butcher told Insider, "but it's got to the point where I wish that somebody else like me would come along and kind of take over."
Butcher, who is PIP's only female ambassador, said she also feels solitary in her activism online. She said she's seen other posts from women with Poland syndrome online, but, for some reason, none of them have blown up nor gained the traction of hers. (Research suggests Poland syndrome is three times more likely to be found in males than females). "It seems like I'm the only woman in this space that's helping people," she said. "And I just wish someone else would come along and help me."
Email tips on all things internet to mleighton@insider.com.
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