Formerly anti-vax parents on how they changed their minds: ‘I really made a mistake'
Soon after the birth, South Carolina-based Johnson, now 42, joined a fitness- and nutrition-oriented multilevel marketing company (MLM). There, she encountered a colleague who made her question the safety of vaccines.
'I remember someone in the community talking about their child who had been 'vaccine injured',' Johnson recalls. 'It sparked a fear in me.' The science of vaccinations and immunization schedules also seemed impenetrable. 'I was very conflicted, and felt like: 'I don't know any of this stuff, I didn't go to school for this,'' she says.
She wondered whether vaccinating her daughter had been a mistake.
Johnson joined 'crunchy' Facebook groups full of moms concerned about potentially harmful substances affecting their children, and started taking advice from a trusted anti-vax family member who seemed particularly credible because she was a nurse.
With her next three children, Johnson chose not to vaccinate. This left them vulnerable to infections with high infant-mortality rates, like invasive pneumococcal disease, Haemophilus influenzae and whooping cough.
'I felt I had done the quote-unquote research,' says Johnson. She read sources she thought were rational, like Suzanne Humphries and Roman Bystrianyk's book Dissolving Illusions, which perpetuates the myth that hygiene, not vaccines, is primarily responsible for the decline of infectious diseases. She and her anti-vax community were convinced the medical system was corrupt, profiting from the distribution of unsafe, unnecessary vaccines. To them, not vaccinating their children was the hard but righteous thing to do.
Johnson soon began sharing what she had learned with others. 'I had a decent following online. People were coming to me and listening to what I was sharing on the internet,' says Johnson, who remembers feeling a kind of 'dopamine rush' when talking to other moms about vaccine 'risks'. 'I know that I led people down a path that now I totally regret,' she says.
I know that I led people down a path that now I totally regret
Nikki Hill Johnson, former anti-vaxxer
Around 2020, Johnson's perspective shifted abruptly.
She started feeling like her MLM job was rigged: 'I was having a lot of success, and then I wasn't. I started watching some anti-MLM content and realizing that everything I knew was just part of a lie,' says Johnson. 'Then I watched my family member who I trusted fall deep into the QAnon rabbit hole. I just felt that was too ridiculous ... Like, I can't really trust her judgment.'
Related: How I escaped the wild west of #cleaneating Instagram and TikTok
Johnson learned how misinformation spreads on social media, and re-evaluated the wellness content she had been consuming. She also started listening to more online influencers who had expertise in epidemiology and public health.
Johnson changed her stance on vaccines, dubious wellness trends and diet culture. She was 'exiled' from her mom groups but didn't really mind. She asked her pediatrician to help catch her children up on vaccines as quickly as possible. '[Pediatricians] realize that people have gotten into this anti-vaccine rhetoric,' Johnson says. 'They work with you.'
Today, Johnson has relinquished the anti-vax myths that once shaped her life and identity. For experts and activists, such stories offer a glimmer of hope. As vaccine skepticism grows in the US and whole communities become more vulnerable to preventable diseases, is it possible to break through the noise and get people the healthcare they need?
The anti-vax movement first emerged in the mid-19th century in response to mandatory smallpox-vaccination laws. Even before the Covid-19 pandemic, anti-vax activism was increasingly tied to rightwing politics, framed around fears of government overreach and threats to personal freedom. In recent years, fueled by distrust of medical institutions, Covid-19-related anxieties and social media misinformation, the shift has accelerated.
While vaccines may carry temporary side effects like soreness and fever, as well as the rare possibility of certain more serious risks like allergic reactions, no credible scientists who study infectious disease and epidemiology think that vaccines are remotely nearly as dangerous as the diseases they prevent, says Dr Joe Pierre, a professor of psychiatry at the University of California at San Francisco, and author of False. Large studies also consistently disprove anti-vax conspiracies, such as that vaccines cause autism.
Yet, according to surveys from the Annenberg Public Policy Center of the University of Pennsylvania, the proportion of respondents who believe vaccines are unsafe grew from 9% in April 2021 to 16% in the fall of 2023. National vaccination coverage for kindergarteners has dipped since 2020 after a steady prior decade.
Measles, mumps and Rubella (MMR); diphtheria, tetanus and pertussis, AKA whooping cough (DTaP); polio; and varicella vaccine rates decreased in more than 30 states in 2024 compared with 2023. Vaccination levels in children have fallen below the herd-immunity threshold for many preventable diseases, including mumps, whooping cough (which killed at least a dozen people in the US last year) and measles, the latter of which is now infecting more Americans than it has in decades and surged 20% globally in 2023. This month, an unvaccinated child died after being hospitalized for measles in west Texas.
'Part of the problem is that people often weigh risks and benefits of vaccines based solely on themselves,' says Pierre. 'They think: 'I had a flu shot last year and I got the flu anyway,' or: 'I haven't had the flu in five years and I never get vaccinated.' They're not thinking about the inherently altruistic benefit of vaccination that involves preventing community spread and protecting those who are most vulnerable to infectious disease, like our parents and grandparents.'
Vaccine hesitancy has a high-profile proponent in Robert F Kennedy Jr, now head of the US Department of Health and Human Services. In a July 2023 podcast, Kennedy falsely claimed: 'There's no vaccine that is safe and effective', despite the overwhelming scientific evidence supporting the safety and effectiveness of vaccines in reducing rates of death and disease around the world. He has told Fox News that he still believes in the long-debunked 1998 study linking the MMR vaccine to autism.
Jay Bhattacharya, another person who has questioned vaccine safety, has been nominated to head up the National Institutes of Health (NIH).
RFK Jr has found a receptive audience among mothers who see themselves as fierce protectors of their children and are the primary healthcare decision-makers in their households. 'It's very manipulative. You see somebody speaking with authority, and you just feel like, that's the truth,' says Johnson. 'Moms are unknowingly spreading this misinformation.'
You see somebody speaking with authority, and you just feel like, that's the truth
Nikki Hill Johnson, former anti-vaxxer
Anti-vax rhetoric may be so persistent because it is profitable. Research by the Center for Countering Digital Hate showed that 70% of Covid-19 anti-vax disinformation between February and March 2021 had been generated by 12 individuals with collective annual revenues of around $36m. They include Joseph Mercola, a content producer who made $7.2m during the height of the pandemic, and RFK Jr, who received a salary of more than $500,000 for chairing the anti-vax Children's Health Defence in 2021, among other enrichment for his anti-vax views (Kennedy's own children have been vaccinated).
Lydia Greene, an Alberta-based 43-year-old, vaccinated her firstborn in 2008. Afterwards, her daughter started crying inconsolably and experienced low appetite. Greene called Public Health Agency of Canada's non-emergency hotline for advice, but the nurse dismissed her concerns. She felt 'kind of embarrassed', Greene recalls, like just a panicky new mom making a big deal out of nothing.
Still worried, Greene went online. In a motherhood forum, she read about a frightening but false theory that babies lack a blood-brain barrier, making them vulnerable to brain injury from vaccines. 'I found people saying: 'They're never going to admit it's a vaccine side effect, but [your baby's] brain is probably inflamed, she's probably in pain,'' says Greene.
Greene remembers a rising sense of panic and a distinct fear: ''Something's wrong with my kid.'' Subsequently, she decided not to vaccinate her next two children.
Her awakening came at the beginning of the Covid-19 pandemic, when she observed her anti-vax community 'shunning the things they said prevented disease, like hygiene and masking'. To her, that seemed like 'contrarianism, not critical thinking'. Moreover, Greene never found a single study supporting the notion that infants lack a blood-brain barrier, and was shocked to see some of the people in her anti-vax community online also claiming that the Earth is flat, which she thought was ludicrous.
'I really made a mistake,' Greene tells me. 'It was really uncomfortable.'
When people dramatically flip on their formerly staunch ideologies, it's usually because they have become disillusioned with once-respected figures, 'or because cognitive dissonance has been stretched to a breaking point', says Pierre.
Both Greene and Johnson re-evaluated their anti-vax stance when once-trusted communities started veering from plausible-seeming medical concerns into what some observers call 'the conspiracy singularity', a worldview where ideas about vaccine harm collide with conspiracies like Pizzagate and lizard people.
However, dramatic pivots like Greene's and Johnson's 'tend to be the exception rather than the rule', says Pierre. Conspiratorial excesses are unlikely to alienate every believer. 'On the contrary, cognitive dissonance, the tension that arises when our beliefs butt up against reality, is typically resolved by digging our heels in even deeper,' says Pierre.
Still, some researchers believe personal stories, like Johnson's and Greene's, are more persuasive than facts alone. To convince vaccine deniers, 'scientific facts should be contextualized and made relatable to be understood as elements of a human experience', write the authors of one 2021 report. Vaccine advocacy groups often feature personal stories as part of their education materials to convey the risks of preventable diseases.
Stories reveal the ways anti-vax ideology can cause harm, whether by increasing the risk of illness or distorting how children understand the world. Violet Adams, 32 (her name has been changed for her privacy), says that when she was growing up in British Columbia, her parents' fear of vaccines instilled terror. 'It's very traumatizing as a child to hear things like: 'The world is run by this evil, shadowy cabal,'' she says.
At university, she saw firsthand that the science professors were 'not brainwashed, not sheep' - and her beliefs began to change.
To the general public, many vaccine-preventable diseases – say, polio or smallpox – can seem like relics of the distant past; people are not always familiar with their effects. Greene argues that public messaging should depict the consequences of vaccine-preventable diseases, saying: '[People] need to know what diphtheria looks like, how it closes off your airway until you suffocate and die.' Washington state's former secretary of health Dr Umair Shah has said it may take the death of an influential figure to a vaccine-preventable disease to bring back wider acceptance of immunizations.
Firsthand experience with vaccine-preventable diseases can be a wake-up call. In 2015, formerly anti-vax mother Kristen O'Meara watched all three of her children suffer through severe cases of rotavirus. 'It was awful, and it didn't have to happen, because I could have had them vaccinated. I felt guilty. I felt really guilty,' she later said in an interview. The experience led her to reconsider her stance and vaccinate her children.
Additionally, institutions 'have to work on how to present the truth in ways that are psychologically appealing', says Pierre.
Conspiracy beliefs can be fueled by psychological needs like uniqueness, a sense of control and social affiliation, says Pierre. Crusading for the truth is a powerful feeling; think of Johnson's 'dopamine rush'. Greene has found meaning in helping others via vaccine advocacy – a different way to satisfy those needs. She is now a nurse and co-founder of Back to the Vax, an organization that connects previously vaccine-hesitant parents, and a representative for the organization Voices for Vaccines.
Dr Devon Greyson, a health information scientist, has studied mothers who changed their minds about vaccines in an effort to 'reverse engineer' the process, they say.
In a 2022 study, Greyson interviewed 23 mothers in Vancouver, Canada, whose vaccine attitudes evolved over time, whether more in favor of vaccines or further against them.
Mothers who became more confident in vaccines described their shift as a cognitive journey 'toward facts and away from fear', guided by trustworthy health authorities and real-world experience, says Greyson. They benefited from non-judgmental support, opportunities to ask healthcare providers questions and the reassurance of seeing with their own eyes that vaccines didn't harm their children. Greyson suggests this framework could be useful in communicating with vaccine-hesitant individuals: instead of simply telling them to 'trust science', encourage them to think scientifically – to ask questions of trusted experts, identify reliable sources and remain intellectually flexible.
If I'm susceptible, anybody can be susceptible
Nikki Hill Johnson, former anti-vaxxer
By contrast, mothers who became more skeptical described their experience as a descent into fear and anxiety, often triggered by dismissive healthcare encounters. Feeling brushed off by doctors left them seeking answers elsewhere, like online communities that stoked their doubts.
Related: Are you falling for wellness misinformation online? Here's how to tell
Healthcare providers are uniquely positioned to shape vaccine confidence and guide parents toward self-identification as critical, scientific thinkers.
Yet, 'physicians are under a lot of pressure, and they often have time constraints', acknowledges Dr Kimberly Martin, a postdoctoral associate at Yale University's department of psychology. Still, even small efforts to build trust, such as referring patients to reliable information and support, are 'so important' in helping families make informed choices, says Martin, whose research focuses on Black Americans' experiences in the healthcare system, including vaccine hesitancy.
Research suggests that 'prebunking', or proactively warning people about vaccine conspiracies, is a promising approach. Resources like the Jitsuvax project, co-created by psychologists, epidemiologists, behavioral scientists and clinicians from seven universities to combat misinformation, can help inoculate people against particular conspiracies before they stumble upon them online.
There's no guaranteed way to snap someone out of anti-vax beliefs. But what helps is early, empathetic support from community and healthcare providers, and making space for people to change their minds as they embrace facts and critical thinking. Johnson, Adams and Greene changed their views not because they were debated into submission, but because they were open, flexible and secure.
Johnson is raising her kids with a solid foundation in scientific thinking. 'I'm trying so hard to teach my kids critical-thinking skills,' Johnson says. 'I feel like I'm a fairly smart person, and if I'm susceptible, anybody can be susceptible.'
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