Worrying About Worrying About Lyme Disease
One mother reckons with her fear of the illness — and why it freaks us all out so much
This story is part of “Tickpocalypse,” a multi-part special report.
Like most people, I can catalog periods of my life by the things I feared, both physical and existential. As a child I was afraid of normal stuff — the dark, roller coasters, monsters — as well as odd, benign things like tomatoes and escalators. But what I feared most back then was undoubtedly the cockroach, that timeless scourge of urban dwellers across millennia. The memory of walking into the kitchen at night, or of the dreaded wee-hours bathroom trip, cringing, waiting for anything with six legs to dash for cover under the harsh flood of fluorescent light, still makes me shudder.
In my twenties, it was the whine of mosquitoes that threatened my sanity as I crisscrossed the globe with my backpack and my DEET, hoping to avoid both adulthood and malaria as long as possible. With school-aged children came lice — don’t even get me started on those.
Then, in 2014, this city girl with peasant stock bought a country house near the beach. There were grasses tall and short, leaf piles, and an acre of backyard that no one had cared for in decades. Our kids were two and five. We shooed them outside, where they hovered on the back steps, unwilling to venture into nature alone. Eventually, they got the hang of it, ambling around in the grass, half-naked, building fairy houses and picnicking with their stuffed animals.
At first, ticks were an afterthought, somewhere between sugar consumption and rogue flu strains on the Worrisome Thing-o-Meter. I’d issue casual reminders to my husband to check behind the kids’ ears and between their toes during bath time, but we were inconsistent. My inattention to the risk was validated when a friend sent our mothers’ group an email about ticks and Lyme from a local pediatric practice: “A recent increase in awareness of the disease has in some cases spilled over into hysteria, resulting in countless unnecessary prescriptions and blood tests, not to mention anxiety,” it explained. “… if you find a tick on Jimmy’s skin, just remove it [and] throw it out; there’s no need to analyze it… with treatment, Lyme disease is easily cured, and the rash wanes within a week.”
Whew! One less thing to freak out about. Lyme is no big deal.
But those halcyon days of blissful oblivion were short-lived. By 2017, when my mother forwarded a New York Times piece trumpeting the many tick-borne diseases threatening to overwhelm the Northeast, I was already caught in the current of hysteria about Lyme disease that was sweeping through my parenting community. Over 700 cases of tick-borne disease were reported in Suffolk County, Long Island, where our house is, that year alone. Everyone on the Eastern seaboard seemed to be talking about ticks, Lyme, and Doxy — Doxycycline, an antibiotic so prevalent in combating the disease it even had a cute nickname.
In a heartbeat, it seemed, the fear of everything that could befall our children — unseen predators, mysterious illnesses with long-term complications, or natural disasters of epic proportions — had codified into one overarching terror: that our kids would be bitten, their blood infected, and their lives destroyed. By a teeny, tiny, tick.
In the intervening years, not much has changed. Were we — are we — all insane? Is our fear justified, or is it outsized, overboard, irrational?
“Sadly, based on what we’ve seen on Martha’s Vineyard, very little is irrational when it comes to ticks,” says Rebekah Thomson, a mom I met in my Brooklyn neighborhood when we both had infants. In 2010, Thomson moved to the island full-time, and in the intervening years, she, her husband, and all three of their kids have been treated repeatedly for Lyme. She introduced me to her friends and neighbors, Meg and Jay Bodnar. Between their four family members, the Bodnars have had two cases of the tick-borne ehrlichiosis; one case of babesiosis, also tick-borne; and two Lyme infections, one of which — Jay’s — has resulted in chronic, debilitating symptoms.
These days, their tick checks blow my cursory exams of ears and toes out of the water. They do not forget armpits, belly buttons, the backs of ears, or the tops of little butts. They check their kids every night at bedtime, from late March through early December. Small wonder that the Bodnars have frequently considered moving to a part of the country where bedtime does not involve headlamps and magnifying glasses.
Every chocolate sprinkle, every speck of dirt, every stray poppy seed began to look like a tick.
Other friends, too, offer stories of their vigilance and its limitations. Some put their kids in what look like Hazmat suits whenever they roam on their Long Island property; others won’t let their kids go into the yard without long pants and socks, no matter how hot and humid it is; a few are on long-term antibiotics for chronic Lyme, with all their attendant complications.
“Expert” recommendations on tick prevention are neither soothing, nor particularly practical. They range from chemical warfare with DEET to Permethrin-soaked clothes, compulsive brushing off of arms, disrobing outdoors and putting those clothes directly into the dryer — because everyone wants to visit the laundry room naked — and then showering immediately.
I can’t even get my kids to take a shower when they’re coated in sunscreen, sweat, Mister Softee, and homemade slime, much less every single time they enter the house. The information overload elevates my natural inclination to worry about things I can’t control to a solid code orange. Did I mention that our home is located in what Newsday called “ground zero” for Lyme disease?
I began sending my husband articles and reports about everything tick-related: Prevention! Prevalence! Permethrin! — along with dire commands like: We must be more vigilant.
At the beach, on the trails, I recited the same lines to my children, at high volume, over and over: Get out of the long grass! Stay on the trail! Sometimes, I ordered other people’s children to do the same, and they vacillated between obedience to adult authority and contempt for the weird lady telling them what to do while drinking rosé from a plastic cup. If my daughter kicked a ball into the brush, I insisted she call an adult (in long pants) to retrieve it; barefoot carousing all over the neighborhood was no longer permitted.
I checked my kids. Every chocolate sprinkle, every speck of dirt, every stray poppy seed began to look like a tick. I studied every bite that swelled, pink and itchy, on their tender calves and shoulders.
“Does that look like a bullseye?” I asked my husband, over and over. “Is there a ring around that?”
I found myself at my own primary care physician, then my dermatologist, convinced that a mysterious rash that had appeared out of nowhere on my inner thigh was a symptom of alpha-gal syndrome, a Lone Star tick-borne illness I’d learned about from a Radiolab episode. Like the protagonist of that story, I was a meat-lover with an inexplicable rash. Unlike her, I had not suddenly gone into anaphylactic shock, but maybe that was right around the corner. My dermatologist was dubious but took a sample anyway; my PCP gamely ran a blood test. I did not have alpha-gal antibodies. My rash was just… a rash.
“The skin is a garden,” my dermatologist sighed, and sent me away with some cortisone cream.
If I want to trace my anxiety to its roots, I need only look a few miles north, to Queens, where my mother, despiser of heat, dirt, insect life, and any type of exertion in nature, still resides. Her outlandish, irrational warnings — Take an umbrella! on cloudless, perfect fall days — Bring a jacket! in an August heat wave — are easily lampooned. But her certainty that the worst is yet to come springs from a deeper well.
My mom lived through the Great Depression as a child, and the Second World War as a teenager. She knew scarcity, hunger, and tenements teeming with people and vermin. Her grandparents fled Eastern European pogroms and laws that restricted Jewish participation in civic and economic life at the turn of the 19th century. The notion of inherited trauma rests on the idea that their suffering, and perhaps that of generations before them, trickles down epigenetically, resulting for me, perhaps, in an enhanced sense of lurking danger every time my kids go into the yard. In this version of events, on which the jury of hard data is still out, you can imagine me as a link in a long, unbroken chain of nervous Jewish parents who overreact to every sneeze, every shiver, every cry in the night and, yes, every insect bite.
Fear that Lyme disease might strike my child — or yours — may also have roots in everything from plain old entomophobia (fear of insects in general) to a genetic predisposition to worry about stuff (a.k.a., inherited obsessional anxiety). It’s also self-explanatory. Of course we worry about Lyme disease. We worry about everything that could harm our kids.
If I only get down to business with a headlamp and a magnifying glass, this line of thinking goes, I can control what befalls my children.
On the other hand, “Fear is a complicated term,” explains Dr. Brian Fallon, who directs the Lyme and Tick-borne Diseases Research Center at Columbia University. A psychiatrist by training, Dr. Fallon says there are solid practical reasons for me to be cautious when it comes to protecting my children from Lyme disease. But so much of what we fear has to do with context. Dr. Fallon shows his medical students a photo of a lovely trail, covered in golden fall leaves. “It’s very peaceful,” he explains, until he superimposes a photo of a giant tick on the bucolic scene. “Unless this is what you see. Then you’re going to be frightened, because you know it can cause a whole range of illnesses. You might avoid walking through the leaves because you know ticks hide under them.”
So, how do I avoid superimposing that fear on every pastoral landscape my children encounter?
“A good approach is to ask yourself, ‘To what extent do I want my child to grow up to live in fear? Or do I want them to feel safe in the world?’” says Dr. Fallon. “If you’re hypervigilant on behalf of your child, you’ll convey that this is a world filled with danger, and anything one does can put you at life-threatening risk. That’s a terrible message.”
In an attempt to get my messaging on track (and avoid traumatizing my children), I decide to run the numbers. What are the odds of my kids getting bitten by a tick and contracting Lyme disease? Like many complex questions, the answer depends on who you ask, not to mention what you want to hear.
According to data compiled by the Democrat & Chronicle, a Rochester, NY-area paper, the two regions my kids spend their time in — New York City and Suffolk County — accounted for 1,606 reported Lyme cases in 2017. That likely means there were actually 16,000 in those areas, since the Centers for Disease Control and Prevention estimates the numbers of infections to be around 10 times the number of reported cases. The combined population of those two areas that year was 10,116,000. So one Lyme case for every 632 people. Statewide, as per CDC surveillance for the same year, the incidence in New York was 17.6 cases per every 100,000 persons, which is more like one in every 5,631. According to Science News, less than five percent of tick bites result in an infection.
“Long Island is loaded with ticks and Lyme,” Dr. Fallon reminds me. “But it takes about 24 hours before the spirochete spreads, so that should comfort you as a parent. If you do a tick check each evening, most often you’ll find the tick and remove it [in time].”
My rash went away; summer has arrived; my children continue to frolic in the short grass of the mowed-weekly backyard. I have yet to find an embedded tick on any of us so far this year, and thanks to the precancerous spot I recently had gouged out of my chest, ticks now compete with sunburn for the title of What To Freak Out Most About.
The children run around, unruly limbs flying, while I chase them, waving sun hats and Off!, thinking: I must protect them. The idea of something bad happening to them that I can prevent, if only I am vigilant, if only I pay attention, is so alluring.
If I only get down to business with a headlamp and a magnifying glass, this line of thinking goes, I can control what befalls my children. Fear, after all, is compounded by uncertainty, and, as Dr. Fallon reminds me, “Some people are much better at tolerating uncertainty than others.” As someone firmly in the intolerant camp, my challenge is to look after my kids without turning them into anxious or agoraphobic adults. Lyme may be scary, but it isn’t nearly as terrifying as raising children who are afraid to go outside.
My current goal, then, is to “be a guide, not a guard,” as the saying goes. My summer plans (grilling, paddleboarding, and rosé all day), include nightly tick checks and resigning myself to the fact that trying to control what happens to my kids is, for the most part, futile. The best I can do is hold their hands and check their toes, teach them to pay attention, to float, and to follow the river. And then let them step off the curb, or into the water, or into the woods and take their chances all by themselves.
This story is part of “Tickpocalypse,” a multi-part special report.