When Kristina W. received her first dose of the coronavirus vaccine earlier this year, she was terrified. Until recently, she said, she believed that vaccines were so dangerous she was willing to “go into an all-out war” to protect her children from receiving any immunizations.

“I had this deep-rooted fear that they could, and possibly even would, kill my children,” said Kristina, 26, a mother of two who lives in New Mexico and spoke on the condition that her full name not be used out of concern for her safety.

Now, although she considers herself “pro-vax” and understands that vaccines are safe and necessary, that knowledge doesn’t always quell her anxiety. These lingering concerns, she believes, are a testament to the power of the anti-vaccination narratives she was exposed to in natural parenting and alternative health groups on Facebook, some of which had convinced her that routine childhood immunizations had nearly killed her eldest son.

“If you’ve never been anti-vax and back to vaccinating, you don’t quite understand the level of anxiety” that can come with resuming vaccinations, Kristina said. “You have that logical knowledge that vaccines are just fine. They’re this great thing. But emotions aren’t logical.”

Experts say the content shared in some wellness communities has powerful emotional and psychological foundations that can cause even science-minded people to question the public health consensus on the ability of vaccines to help curb the spread of the coronavirus. Some voices within the wellness space are adept at building connection, gaining trust and sowing doubt – all while appealing to widely held beliefs about healthy living.

“This is what makes some in the wellness community so dangerous,” said Stephanie Alice Baker, a sociologist at City, University of London, who is careful to add that not everyone in the wellness space is trying to cast doubt on vaccines.

“It’s not that the wellness community per se is conspiratorial, or that everyone has these kinds of nefarious interests where they intend to manipulate and deceive,” she said. “It’s that once you trust leaders and influencers in this space, then when they become more conspiratorial and extreme, you are susceptible to go down that path with them because you already trust them.”

In some ways, the messaging and themes used by some vaccine-hesitant members of wellness communities reflect those that have been documented in the broader anti-vaccine movement. But there are certain approaches, experts said, that especially key in on the interests and vulnerabilities of people who are invested in wellness culture.

Recognising these strategies is “essential in helping social media users develop resilience to harmful content and allowing them to report this type of content to platforms,” Cécile Simmons, a researcher with the Institute for Strategic Dialogue, wrote in an email.

Encouraging skepticism of institutions

The online wellness community rose to prominence amid an erosion of trust in traditional authorities, such as government, health and science institutions and mainstream media, said Baker, co-author of “Lifestyle Gurus,” which explores how authority and influence are created online. This loss of faith has only been exacerbated by the pandemic, which has produced conflicting and confusing guidance from public officials.

In a “low trust society,” Baker said, “you look for other sources to trust and where to place your trust because we can’t be experts on everything. We need other authorities and influential people to guide us.” In the wellness world, those authorities might include nutritionists, physical trainers, lifestyle bloggers, spiritual coaches, naturopaths, yoga teachers and holistic health experts. Among them are online influencers with large and small followings. Sometimes, in fact, a more modest following can lead to more trust; marketers say that micro-influencers (10,000 to 50,000 followers) and nanoinfluencers (fewer than 10,000 followers) may be seen as more truthful and authentic.

Ashley Taylor, who says she is a registered nurse and holistic health coach, posts frequently about “freedom” on Instagram to more than 51,000 followers. In one colorful post that was deleted after the publication of this article, Taylor wrote, “Approval from a 3 letter agency does not override your right to autonomy and to decide what goes into your body.” While she emphasized in the post’s caption that she wasn’t trying to make decisions for her followers, she also listed multiple reasons she doesn’t “have a lot of trust in the [U.S. Food and Drug Administration].”

Taylor did not respond to requests for comment but afterward shared a public post on Instagram that said, in part, “I am not you. So I will never try to tell you what is right for you. I am here to remind you that it is your choice to make.”

Kristina, the former anti-vaccine mother, recalled seeing comments casting doubt on the motives of public health agencies in the Facebook groups she visited.

For example, she said, she became “suspicious” after reading a misleading claim about the CDC holding patents for a number of vaccines, and “that seemed to scream a financial motive.” While the CDC does license vaccine technology developed within the agency, some of which is patented, it does not sell vaccines.

Promoting distrust can be especially effective when it plays into a person’s existing doubts about traditional institutions – doubts that often stem from legitimate concerns about health and safety or poor experiences with the health care system.

Lydia Greene, a mother of three who was a self-described “anti-vaxxer” for more than a decade, vividly recalls the nurse who dismissed her concerns when she thought her first child had a reaction to vaccinations.

“The nurse basically blew me off and made me feel dumb,” said Greene, 40, who was a quality control chemist at a pharmaceutical plant before she left her job to start a family. Greene said she increasingly turned to online parenting forums for guidance, where she was exposed to anti-vaccination beliefs that convinced her to stop vaccinating her children.

“You just feel so lost,” she said, “and these are your people, and they tell you what to do when you’re not sure.”

Framing themselves as truth-seekers

In this climate of distrust, experts said, many people in the wellness community present themselves as truth-seekers at constant risk of being silenced by mainstream authorities or online moderators.

When these people’s posts are flagged online, Greene said, they often claim the platform’s moderators are just “trying to get the sheep to take the vaccine.”

Heather Shields, a “Health + fitness motivator,” according to her Instagram bio, with about 10,400 followers, has posted during the pandemic about sharing “truth.” In one photo, Shields poses with what appears to be a strip of black tape over her mouth, holding a finger up against the tape in a shushing signal. The post’s caption says, “Why are people like me being hidden, shadow-banned, fb jailed and cyber-attacked? Because WE ARE THE VOICE OF TRUTH. . .” and includes the hashtag “#wewillnotbesilenced.” Shields did not respond to requests for comment.

Experts said it’s also important to recognize potential financial motives behind the truth-seeker framing: It can help influencers promote and sell alternative therapies, such as herbal tinctures and essential oils, which undergo far less regulation than vaccines and drugs approved by the FDA.

“There’s a lot of content that heads down the path of ‘You shouldn’t take this vaccine. Instead, you should buy my colloidal silver. Instead you should buy my essential oil,'” said Renee DiResta, the research manager at the Stanford Internet Observatory who studies the spread of malign narratives across social networks.

Taking science out of context

The public is observing the scientific method up close and in real-time. The uncertainty inherent in the process, and the rapidly-changing public policy based on it, has eroded trust further in authorities and made it easier for members of the wellness community who are vaccine hesitant to present scientific material in a misleading way, experts said.

“The size of the following and the certainty of a voice have substituted for getting in there and understanding if this is peer reviewed or if there’s any science behind it,” said Doreen Dodgen-Magee, psychologist and author of “Deviced!: Balancing Life and Technology in a Digital World.”

“Do your own research” is a common refrain in anti-vaccination spaces, said DiResta. But, she added, it’s often said by people “sharing links to sites that are very aligned in a particular way, usually an anti-vaccine way.”

Another tactic is cherry-picking data. For example, some will point to the Vaccine Adverse Event Reporting System, known as VAERS, as evidence of widespread deaths and injuries from vaccines, while ignoring the broadly acknowledged limitation of its data. According to the Department of Health and Human Services, which co-sponsors the database with the CDC and FDA, a report alone cannot be used to determine if a vaccine caused or contributed to an adverse event. Furthermore, anyone can file a report to the database with “incomplete, inaccurate, coincidental and unverified information.”

Gigi Winters, who runs the Instagram account “informed_mothers” and uses hashtags such as “#conservativememes” and “#conservativewomen,” encouraged her 49,500 followers to “Research everything!” in a short video referencing the coronavirus vaccines on Instagram Reels that has been viewed more than 86,000 times. In the video, Winters cites a misleading statistic about the coronavirus survival rate, writing, “I’ll take my 99.9% chance and trust my immune system instead. . .”

That often-cited statistic, which has been circulating for more than a year, has been identified by fact-checkers as an apparent misuse of modeling data from the CDC, which noted that the parameters it was using in its scenarios “are not predictions of the expected effects of COVID-19” (emphasis in the original). This statistic also doesn’t take into account the long-term health impacts and cost of treatment many covid-19 survivors may face. Winters did not respond to requests for comment.

Appealing to natural and holistic health interests

An interest in natural remedies and holistic health can be a gateway into the vaccine-hesitant community, experts said. Kristina said her journey down the “rabbit hole” started with a desire for a nonmedicated birth. In the Facebook groups she joined, she noticed that many people “seemed to be inherently anti-vax and there was a sort of unspoken rule about not advocating for vaccinations.”

In some Instagram accounts featuring natural and holistic living content, vaccine misinformation is slipped in between general posts about well-being and designed to blend in with a profile’s overall visually pleasing aesthetics: vibrant photographs of food, flowers and landscapes as well as serene palettes and attractive fonts.

“This content is ‘prettified’ for Instagram and often couched in the fairly ambiguous language of personal choice and self-realization that is characteristic of these communities,” said Simmons, of the Institute for Strategic Dialogue. “Subtle anti-vaccine messaging appears alongside pictures of sunset and yoga poses and posts about meditation and raw food, making it look seemingly innocuous.”

Vaccine-hesitant voices within wellness communities also post frequently about impure, man-made products – and put the vaccines in that category, sometimes calling them “poison.”

Yolande Norris-Clark, who goes by “bauhauswife” on Instagram, describes herself as a “Writer, birth educator, freebirth coach, iconoclast.” She shares information about natural birth practices and photos of herself and her children in scenic landscapes with her 46,500 followers, along with posts questioning vaccines and the medical establishment. In one post, Norris-Clark shared a minimalistic text graphic that read, “The very notion of injecting a foreign substance into a human being’s body to promote ‘health’ is not only absurd, but utterly perverse.” Norris-Clark did not respond to requests for comment.

Anti-vaccine messaging also tends to emphasize strengthening the immune system through natural foods and fitness, rather than relying on man-made interventions, experts said.

The common argument: “You don’t need this. Here is an alternative thing for you. If you only boost your immune system and wash your hands, then you’re not going to catch disease X,” DiResta said.

Building community

Online wellness spaces also can feel welcoming, validating and intimate, in contrast to institutions, which often deliver dry and fact-based information.

Many people in these spaces create a perception of openness by documenting daily activities such as meals, workout routines and self-care regimens. Members of groups also share personal stories that are often relatable and compelling. The perceived intimacy and authenticity of these online interactions can create what experts call parasocial relationships, or a sense of closeness to a person you don’t actually know.

“Western medicine kind of goes, ‘Here’s a fact, believe it,'” said psychologist Dodgen-Magee, whereas the wellness community “appeals to something very unique and shiny and missed for many people in daily life, which is this sense of being known and being seen and feeling felt.”

Isabel Klibanoff, a small-business owner who runs the Instagram account “junebug.co,” which has more than 19,600 followers, describes her page as “a community for beings of light.” Klibanoff has called for that community to resist “tyranny” and “forced injections.” In a now-deleted post alongside a neutral-toned graphic that read, “There is nothing wrong with you. There is everything wrong with the world,” she praised people for “not following the crowd and daring to be different!!” She added, “[You] should all be commended for your incredible bravery and strength.”

In an emailed statement, Klibanoff said, in part, “I firmly believe in each individual’s right to choose what pharmaceutical products they put into their bodies, particularly when there is no long-term safety data available on said products. I believe in informed consent for all medical procedures, and coercion is not consent.”

That sense of community helped draw moms Greene and Kristina into the anti-vaccine movement. “After a while, you have this online family where you can post a paragraph and then five minutes later you’ve got all these replies and all this advice and all this support,” Greene said. “You come to value their opinion and their thoughts and their approval even. It gets deep really quickly.”

But an online community also played a major role in Kristina’s return to vaccine acceptance. In early 2020, Kristina, who had begun to question her anti-vaccination stance, joined the evidence-based Facebook group “Vaccine Talk,” whose co-founder emphasized to The Washington Post in a recent profile that civility is critical to the group’s success.

“What we envisioned when Vaccine Talk was first created was that it could be a place where people could ask questions and get answers from people who are understanding and sympathetic, but giving them evidence-based information that they can rely on,” said Kate Bilowitz, the group’s co-founder. “The people who are active in the group are there because they really care about the group and the members that come in and ask questions are looking for guidance.”

For years, Kristina had been convinced through online natural parenting and natural health groups that vaccination was linked to her son’s severe gastrointestinal issues. But when she posted on Vaccine Talk, its members – who she felt were mostly understanding and patient – helped her find more plausible reasons for her son’s condition. They “helped me critically think about why I had these views,” Kristina said.

These days, Kristina is an active member of another online community – Back to the Vax – a support group for vaccine hesitant people and former anti-vaxxers. Greene, who co-founded the group, said she abandoned her anti-vaccination beliefs after she reexamined them during the pandemic. She is now in nursing school with the goal of using her education to fight vaccine hesitancy.

Both women acknowledge that one of the more difficult aspects of changing their stance on vaccination was coming to terms with the fact that they had been so mistaken.

“It was extremely psychologically difficult to really face what I was wrong on,” Kristina said. “When you have deep-rooted beliefs, anything that goes against that can feel like a personal attack.”

Greene now likens the fear of being wrong to a prison. “It keeps you in this box and it doesn’t allow for growth,” she said. “Just lean into it, you’ll be fine.”DM

(c) 2021, The Washington Post