Alice Fleerackers lived most of her life without recommended vaccinations for hepatitis B, human papillomavirus and other illnesses.Rafal Gerszak/The Globe and Mail
Alice Fleerackers is a freelance writer and a doctoral student at Simon Fraser University, where she studies how controversial science is communicated in the digital sphere.
On a grey morning in January, 2019, I walked into my doctor’s office for what I hoped would be a quick, straightforward visit. I sat in the examination room, clenching and unclenching my fists as I waited. My palms were sweating, my heart was racing. I was nervous and my body knew it.
After what felt like hours, the nurse practitioner finally came in. “Well, hello,” she said, a warm smile spreading across her face. “What can I do for you today?”
I shrugged my shoulders, took a deep breath and tried to gather my courage. “I’m 27 and I haven’t been vaccinated since I was three,” I blurted out. “Can you help?”
I watched her smile slowly slip away.
“Oh my God,” she said. “Hold on, let me go talk to my supervisor.”
A woman in New York state gets a measles, mumps and rubella shot. MMR vaccinations are normally given in childhood.Seth Wenig/The Associated Press
For many people, getting a vaccine is a minor irritation: a brief moment of discomfort in the school auditorium in childhood, or an added travel cost, an extra hassle that is soon forgotten. But for me, choosing to get vaccinated was one of the hardest decisions I’ve ever made.
I am the child of two very smart, very loving vaccine hesitant parents – parents who raised me to fear what they saw as a risky, potentially life-threatening medical procedure. As a result, I lived most of my life missing many of the recommended vaccines, from hepatitis B to HPV.
Although I had doubts about my parents’ beliefs as early as high school, fear of being shamed and stigmatized prevented me from getting vaccinated for more than a decade. I don’t think it had to be that way. Had I felt safe to speak openly about my upbringing – to ask about vaccination myths without facing judgment and ridicule – I might have done so sooner. Were our society just a little more open, a little less polarized, it wouldn’t be so difficult for someone like me to question – let alone change – what I long believed to be true.
Alice Fleerackers as a baby. When she and her sister were growing up, their parents spoke candidly about the choice not to vaccinate them.Courtesy of Alice Fleerackers
Growing up in Vancouver, life was good: I was healthy and happy, my parents protective and loving. They were open with me and my sisters about their decision not to vaccinate us, and, for the most part, we accepted it.
By the time I started university, I’d seen many of my friends receive their vaccines. None of them had experienced the horrifying side effects my parents were so worried about. But although I no longer believed immunization was dangerous, I didn’t see any reason to change the way things were, either. Rather than questioning my parents’ views, I went along with them, nodding my head at any mentions of “risks” or “complications.” For more than two decades, my missing vaccines remained little more than an occasional complication at the doctor’s office.
All of that changed in 2018, just before I turned 27. I was checking my e-mails one morning when I saw the headline in one of my newsletters: Measles Resurgence ‘Due To Vaccine Hesitancy’, WHO Warns.
I had heard a few things about the outbreaks by then, but I guess some part of me had been avoiding reading into the issue any further. This time, I put down my coffee and clicked through to the story. I discovered that cases of measles were increasing all over the world, largely owing to what the article called “anti-vaccine myths.”
My heart started racing. Measles outbreaks had increased by as much as 30 per cent in the past year alone.
Horrified, I dug deeper, scrolling through dozens of other stories about the crisis. Measles Cases Hit Record High In Europe, blared one headline. No Vaccines, No Public School: Is It Time For Canada To Emulate France? asked another. A breath caught in my throat as I read a third: Measles Outbreaks Now A Global Problem Thanks To Anti-Vaxxers.
I read on and learned that measles cases had cropped up in 42 of 53 countries in the World Health Organization’s European region. As many as 45,000 people had fallen ill in Ukraine alone. Even in the United States, more than 100 cases had been reported in the first half of that year.
Each headline elicited a new pang of guilt; each statistic filled me with more shame about my upbringing. Everywhere, experts seemed to agree: vaccine hesitant parents, such as mine, were largely to blame.
My heart sank as I read the line “110,000 measles-related deaths.”
So many lives lost – and here I was. Unvaccinated. A part of the problem.
I pictured my mother reading me Harry Potter as a child, my dad staying up late so many nights to help me finish last-minute social studies projects. These were the parents I knew and loved: the caring people who always put me and my sisters first.
But now I was seeing them with fresh eyes. Suddenly, my parents became “egocentric, entitled, misguided, selfish” anti-vaxxers – the “ridiculous,” “full-goose bozo[s]” behind this public-health crisis. How could they have been so misguided? I wondered. What had my family done?
The overwhelming guilt I was experiencing was only made worse by the fact that I was working on my PhD application at the time. The research project I was proposing was about how controversial science is communicated online. I was learning a lot about how misinformation – such as the long-disproved link between the MMR vaccine and autism – can spread through society.
Every journal article I read was another confrontation with my past, every mention of “false belief” another reminder of my own hypocrisy. I was a living, breathing example of the very anti-science sentiment I hoped my research would help overcome. I was ashamed and I was incredibly alone.
For the first time in my life, I found myself truly questioning my own immunization status. Had I received the MMR vaccine? I wondered, trying to remember when my mom had stopped letting me get shots at school. Could I infect someone else? Even worse, what if I already had?
Unfortunately, answers were surprisingly difficult to find. When I asked my doctor for my vaccination history, she came up blank. (My family, it turned out, had seen a different GP when I was young.) My early medical records, created before digital archiving was standard practice, were also impossible to track down. The only option, I was told, was to check with a local travel clinic – which didn’t prove particularly fruitful, as I had never visited one in my life.
Le'auva'a, Samoa, 2019: Nurses prepare measles vaccinations as part of a public vaccination campaign. A year earlier, Samoa's government suspended measles vaccinations amid a public panic stoked by anti-vaccine groups, and a large measles outbreak soon swept the Pacific island nation. The 2019-20 outbreak has so far killed more than 80 Samoans and infected more than 5,700.ALLAN STEPHEN/UNICEF/AFP via Getty Images
Kiev, 2019: A boy attends a protest by anti-vaccination activists against a decision by the health and education ministries to forbid unvaccinated children to go to school. Mistrust of the Ukrainian government and health system made vaccine hesitancy a nationwide problem in the 2010s, with deadly results.Gleb Garanich/Reuters
My parents were never what you might call “true” anti-vaxxers. Instead, they were among the millions of Canadians who, for whatever reason, are skeptical about the safety or effectiveness of vaccination. Many of these vaccine-hesitant people choose, like my parents, to only partly vaccinate their children. Some simply go off schedule, delaying vaccination until later in their child’s development. Others – as many as 50 per cent of Canadians – follow the recommended plan, but fear there may be dangerous side effects to doing so.
For me, my partly vaccinated status only added to the confusion and anxiety I was already experiencing. I’d always known I was missing at least one or two. But I had no idea how many, not to mention which ones. If I wanted to become immunized, I would need some answers.
I thought that, by making the decision to become vaccinated, I had overcome the hardest part of the journey. I had expected the medical system to welcome me with open arms, ready to answer all of my questions. But instead, I was bounced from medical practitioner to medical practitioner, each of whom seemed less sure of what I should do than the last. No one seemed to know how to help a partly vaccinated adult. Was there no protocol for dealing with someone like me?
Had there been someone to walk me through the process, to tell me what to expect, this experience would have been so much less painful, so much less isolating.
I was left with one option: to ask my parents. Even the thought of doing so filled me with dread. I was never a rebellious teenager. I respected them deeply and had never challenged them about their decisions.
My family is very close and my parents have always been two of the most important people in my life. For as long as I can remember, I’ve asked them for advice on everything from boyfriend issues to research projects. They are both brilliant, insightful and incredibly well-read. To this day, I trust them almost unconditionally.
Yet, I kept thinking about the headlines, kept hearing the furious outcries against the anti-vaxxers echoing in my head: “egocentric, entitled, misguided, selfish.” Was this another side to my gentle parents? I had to confront them.
A family photo shows Ms. Fleerackers around Grade 5. Later in life, when she wanted to be vaccinated, she wasn't sure at first which shots she had and which she didn't.Rafal Gerszak/The Globe and Mail
Dec. 5, 2018, I called my mother.
She answered after the first ring. “Oh hi, Alice,” she said. “So nice to hear from you.”
“You, too.” My heart was pounding furiously, yet I was instantly soothed by the sound of her voice.
“This is a bit out of the blue.” I attempted to sound casual. “But would you mind sending me a list of all the key medical issues I should know about? You know, which great aunt died of what disease, any drug allergies I might have, which vaccines I’ve received – that sort of thing.” I didn’t want to sound suspicious, so I added: “My doctor wants to know.”
“Oh, vaccines?” she responded. “Well, I can tell you that right away. You haven’t been vaccinated since you were three.” (I found out later that I had in fact received all my vaccines required before kindergarten.)
This took a second to sink in. This was a lot younger than I’d expected.
“What about MMR?”
“Oh, that one we gave you,” she said.
I let out a breath I hadn’t realized I’d been holding. Thank goodness.
“At first we let you get all of them,” she continued. “But, you know, after what happened to Erika, we decided to stop.”
I could almost feel my mom’s smile disappear on the other end of the line.
Even all these years later, my parents still get upset whenever anyone brings up Erika’s diagnosis. She was the daughter of a family friend who’d been diagnosed with autoimmune diabetes immediately after a vaccine for hepatitis B. Her mother, a medical doctor, assumed there was a link between the vaccination and the onset of the disease shortly after. When my parents found out, they were horrified.
My mom said that they’d heard a lot of bad stories about vaccines at the time – especially about the hepatitis B shot. It had been shown to cause autoimmune issues, she said. Apparently, it was so dangerous that France had decided to ban its use entirely.
Taking the risk, she explained, just wasn’t worth it. From that point on, my parents stopped vaccinating me and my sisters.
Although they didn’t have a record of exactly which vaccines I’d received, my mom was certain I was missing hepatitis B and HPV, not to mention most of my booster shots.
One dose of the human papillomavirus vaccine Gardasil. HPV was one of the vaccinations Ms. Fleerackers was missing, along with hepatitis B.The Associated Press
By the time we hung up the phone, I was shaking all over. Although I was furious, I was also very confused. I knew that the vaccine-autism link had been disproved, but I’d never heard of a French vaccine crisis. I wasn’t sure what to believe.
Eventually, I did find the story my mom had been so worried about. I learned that the French Ministry of Health had temporarily suspended the hepatitis B vaccine program in schools. Yet, this decision was made in response to public concerns about the vaccine, not because of any scientific evidence supporting those concerns. Unfortunately, just as with the MMR vaccine and autism, a seed of doubt had been planted. Today, even after multiple research studies have shown the opposite, many people continue to believe the vaccine can spark multiple sclerosis, as well as a long list of other conditions.
The academic in me knew I should trust the science, but the five-year-old who had been raised to fear vaccines wasn’t so sure. Instead, my mother’s warning – “It’s very dangerous, Alice” – bore its way deep down into my core, in that special way that only a mother’s words can. Slowly, doubt started to creep in again. A small part of me found itself wondering: Could my mother be right?
I kept my doubt to myself. Asking for help would be too shameful to bear. It would mean admitting that I was questioning the rigour of the science behind vaccines, something that, as someone who hoped to pursue a career in research, I simply wasn’t prepared to do.
Instead, I became obsessed with immunization research. Over the next few months, I worked in a frenzy I’d seldom experienced before, determined to understand what, exactly, had happened in France. Suddenly, my PhD topic became deeply personal, a battle between the parents who had raised me and the science to which I’d decided to dedicate my life. I read voraciously, making my way through alternative “health news” sites, World Health Organization press releases, scientific research articles and more. I needed truths – not just for my own sake, but also for my mom’s.
I had expected my search to answer all of my questions – that science would provide irrefutable “evidence” that my mom was wrong. Yet, where I had expected to find clarity and certainty, I found only more confusion, more doubt.
Yes, the vast majority of scientists agree that vaccines are safe. But, as with all science, there remain unresolved questions, conflicting results and differing interpretations within that consensus. To those within the scientific community, these uncertainties are seen as normal and even desirable – a core component of the scientific process – but to outsiders, they can be disorienting and disconcerting. They can, effectively, become the seeds of doubt.
As I tried to parse dense academic paper after dense academic paper, I became keenly aware that I, too, am an outsider to this science. Yes, I have a master’s degree, multiple years of research experience and a solid understanding of scientific methodology. But, like my mom (and many vaccine-hesitant parents), I do not have a background in immunology. I am not specialized in the methods and terminology of vaccine science, nor did I have the expertise to evaluate every immunology study I encountered, to fact-check every suspicious claim.
For all my academic training, I, too, struggled to separate scientific fact from fiction. I, too, was often led astray.
When I shared my findings with my mom, she took me by surprise. She conceded.
“I must have been wrong about the hepatitis B vaccine,” she acknowledged, nodding as she tried to take it all in.
As I watched, her expression shifted from deep thought to regret. I saw a sadness I hadn’t expected.
“But you have to understand that I did the best I could with the information I had,” she said. “Things would be different now.”
She had been so busy at that time, she explained, working and trying to care for three young children. What had happened to Erika had been so alarming, so personal. She simply didn’t have the time to look into it further. She did what she thought was best for all of us. She took the story as truth.
As I tried to wrap my head around my mom’s words, I found myself thinking back on my parents – on what it must have been like for them to go through this process back in the nineties, when they were deciding whether to vaccinate me and my sisters. Were they equally confused by the conflicting reports? By the jargon and the uncertainties, the stories and press releases?
Above all, I was struck by the unbelievable wealth of information – both good and bad – that was available to me now. At this point, I’d been accepted into my doctoral program, so I had access to almost every academic article ever published, including those in paid subscription journals. I also had the privilege of a high-speed internet connection, while my parents had barely had access to dial-up back when the early vaccine-related rumours first started cropping up. If trying to make sense of this information was hard for me now, what would it have been like for my parents – with less access, fewer tools, less time at their disposal?
But I also realized that information alone, no matter how credible, would never have been enough.
Yes, science is one of the most powerful sense-making tools we have available to us. It can help us distinguish between evidence and superstition, causal relationship and surprising coincidence. Yet, no matter how large the sample size, how rigorous the methods, or how narrow the confidence intervals, trusting in science is exactly that – an act of trust. And if this experience taught me anything, it’s that trust is not a fact-based reaction. It’s a deeply, deeply emotional one.
If we truly want to increase vaccination rates, we cannot continue to see things so starkly in terms of “us” and “them.”
Putting the facts out there and hoping people will find them is not enough – nor is calling out misinformation and fake news, pointing fingers, assigning blame.
To create real change, we need to be ready to listen – deeply and fully – to those who think differently, and support them with empathy and care. For everyone’s sake, we need to start building bridges across the divides in our society, so that those who want to discover what’s on the other side are not left to do so alone.
My parents and I still don’t see eye to eye on everything. But we do respect each other. Of course, they’ve made some choices over the years that I don’t agree with, but they certainly weren’t irresponsible. They made every decision – even the wrong ones – for our benefit. They did the best they could with the information they had.
They were human.
Ms. Fleerackers says that, while she doesn't agree with every choice her parents made about her upbringing, they still respect each other.Rafal Gerszak/The Globe and Mail
Last October, I walked into the public health clinic to finish my last round of shots.
I greeted the nurse, sat down, and started to roll up my sleeve. About halfway through, I had to stop.
“Are you alright, dear?” asked the nurse.
I took a deep breath, reminded myself of all my research and about the two other rounds of vaccines that went just fine.
Despite these reassurances, I was still scared. I could hear my mother’s warnings. I could feel her fear and doubt – but also her love and fierce desire to protect me and my sisters.
I took another breath and finished rolling up my sleeve. “Go ahead,” I said to the nurse. “I’m ready.”
When the needle went in, I cried like a baby.
“There, there,” said the nurse. “I know this can hurt.”
It did. But not quite in the way that she meant it.
This article has been updated to clarify a description about vaccine hesitant people.
Keep your Opinions sharp and informed. Get the Opinion newsletter. Sign up today.