The Secret Society of Self-Stingers

Nothing worked to ease the pain of chronic illness — until I discovered venom therapy. Now I’ve stung myself thousands of times, and found people who became my closest friends.

The Secret Society of Self-Stingers

I had been preparing for the party for weeks. First, I signed up for a Paperless Post account and carefully chose the brightly patterned invitations. Then, I went to my organic food co-op and filled my cart with healthy snacks: gluten-free pretzel sticks, medjool dates, turmeric-roasted cashews. Through a neighborhood Facebook group, I borrowed eight folding chairs. I bought name tags and carefully wrote out each guest’s name with a thick Sharpie. Finally, on the morning of, there was nothing left to do but tidy my small Brooklyn apartment from top to bottom: vacuuming up cat hair, wiping down the coffee table, and scrubbing out a dozen old jars to use as glasses for the large crowd I expected.

Just as I finished arranging the folding chairs in my living room, the doorbell rang and the first guest arrived. For the next half hour, a steady stream of women ranging from their 20s to their 60s passed through my door, throwing their coats on my bed and filling up jars with sparkling mineral water. Eventually, all 17 of us settled in a circle, crowding onto my couch, the chairs and some pillows I had strewn on the floor. We made a few minutes of small talk about the weather, the subway service, the bus routes, before I cut to the chase.

“So,” I asked. “Who needs a sting?”

Risha, who had dark, tousled curls and thick-framed glasses, raised her hand.

“I’ve already had my test sting, but yeah, I’d do another one!” she said.

I quickly ducked into my bedroom closet, grabbed a small wooden hut filled with 60 buzzing bees, and returned to the group. Sitting under a floor lamp, I used a pair of long, delicate tweezers to grab a squirming insect, then asked Risha to pull up her sweater and straighten out her back. Using the knuckle of my thumb to measure one inch from Risha’s spine, I carefully placed the bee to her skin and gave it a light tap. As the tiny barbed stinger went in, Risha inhaled sharply and I slowly counted to 10. I scraped out the stinger with my fingernail, then turned to my guests, who had come to my house to learn about using live bee stings as a treatment for Lyme disease.

“Who’s next?”

I’d been thriving as I entered my 30s, finding fulfillment as a busy freelance journalist and traveling around the world to work on my stories. Then, in the summer of 2017, I ventured to the Catskills, a wooded region just north of my home base of New York City, with two of my closest friends. Willy’s parents had a second home there, and the three of us spent a long weekend hiking, exploring and lounging in the grass. We frequently checked each other for ticks and found a few of the small arachnids crawling across our skin and clothes, but none that had bitten us.

And yet, a few days after returning home, I woke up one morning with a dull headache and a paralyzing level of bone-heavy fatigue. I saw my family doctor, who surmised that I had probably been bitten by a tick too small to see and had possibly contracted Lyme disease. He wrote me a script for antibiotics, which I began swallowing twice daily, and soon I felt better. My fatigue ebbed, then disappeared. I went on with my life, completely forgetting about the episode, but only three months passed before I started to feel sick again.

What I didn’t know at the time — couldn’t have known, considering how little the disease is understood — was that I was actually experiencing a “relapse” of my earlier Lyme infection. Often, patients like me feel better while taking antibiotics, but although they might stay well for a period after stopping them, they will eventually fall ill again.

Had I known this, I might have saved myself the year and thousands of dollars I spent searching for the explanation for my unrelenting fatigue, my creaky, popping joints and the sharp aches I felt in my feet and shins. But because chronic Lyme — Lyme disease that doesn’t go away after the initial treatment is complete — is a controversial diagnosis, and one that is most likely vastly underdiagnosed, none of my 12 doctors mentioned it as a possibility. Instead, I was repeatedly told I was the picture of health.

As I fell deeper and deeper into the black hole of undiagnosed chronic illness, I sat in bed and watched my life slip away. I explained my situation to friends, hoping that those around me would pitch in by picking up groceries or preparing me a meal. Instead, my friends became harder and harder to reach. I heard from them less and less frequently, until, in several cases, I didn’t hear from them at all.

At first, I thought that I was responsible for these losses. I blamed my new self for being difficult and unlovable. Surely, my black cloud of negativity and panic was pushing people away. Fearing the further erosion of my relationships, I pushed my failing body way too hard, forcing myself to attend parties and go to concerts and bars, where the crowds of people and loud noises made me feel overwhelmed, anxious and confused. Added to my already unbearable level of physical distress, the mental unease of my inability to socialize was punishing.

Later, I would come to learn that my experience of chronic illness was common: Many sufferers lose their most valued friends, romantic partners and family members, who often feel unequipped to handle the day-to-day difficulties of an ever-present disease. But at the time, I was stunned and confused, left alone to navigate the underworld of sudden and inexplicable illness. While I previously had a take-it-or-leave-it attitude toward social media, I soon became addicted to the glowing screen, which, cooped up as I was, became a vital link to the outside world.

It was during one of my many Instagram black holes that I happened upon the page of a woman named Brooke Geahan. In most of her photos, Brooke hiked, baked and sipped natural wines. But interspersed with these images were more dramatic ones of her looking bedraggled and desperate: in a hospital, a tube of oxygen up her nose; at home, injecting intravenous fluids into a port in her chest. As I scanned the woman’s posts, I read her story. She had become very ill with Lyme and additional coinfections conferred by a tick bite. She had nearly died. Eventually, she discovered something called bee venom therapy (BVT). She was now fully healed, and spreading the word about the treatment.

By this point almost completely bedridden, I read about BVT with interest. Eventually, I contacted Brooke and told her my story. Noting my location in New York and my history of exposure to ticks, Brooke explained chronic Lyme — a condition I still didn’t know existed — and posited that my earlier brush with the infection had likely not been treated adequately. She urged me to get tested, and I did, first with a more general Lyme test, and then with a highly sensitive test created by a private lab.

As I bided my time waiting for the test results, I dove into the science and history of BVT, learning that apitherapy, the use of treatments derived from bee venom and beehives to treat illnesses, is an ancient modality that has been used all over the world to manage conditions ranging from multiple sclerosis to rheumatoid arthritis. By following Brooke’s page, as well as by joining the Facebook group Healing Lyme with Bee Venom, I schooled myself on the particulars of BVT for Lyme: “Stingers” use 30 bees per week, placing the insects one inch out from the spine to allow the venom — whose unique mix of peptides is broadly antibacterial, antiparasitic, antiviral and immune-boosting — to utilize the spinal nerves as a pathway throughout the body, physically paralyzing and dismantling the Lyme-causing bacteria, Borrelia, that it encounters in blood, tissues and bone.

When both of my tests came back positive, I knew that I would assemble my supplies and begin the treatment. As it happened, Brooke had planned an informal meetup to discuss BVT in December 2018. Using all of my very limited strength and energy, I made it to the event. Inside the main room of an infrared-heated hot yoga studio in downtown Manhattan, about a dozen young women in stretchy pants and messy buns — some, like me, accompanied by their middle-aged mothers — formed a semicircle in front of Brooke, perching on meditation pillows as she held forth on the robust science of BVT, and how she’d used it to conquer her debilitating infections. As she spoke, Brooke cradled her wooden box of bees in her lap, and the insects buzzed softly as they flitted about their enclosure.

As we shared story after story of our own health challenges, the talk ran long, and we hurried down the hall to reception as the evening yoga class began. As the bee crowd pulled on coats and scarves, I located my EpiPen and asked Brooke to anoint me with a test sting. My heart pounded as I asked my mom to pull up 911 on her phone, just in case. But for Brooke, the sting was old hat, and she continued chatting with the stragglers as the bee’s venom sac pulsed and twirled inside my back — the first of approximately 4,500 stings I will receive over the course of my two- to three-year treatment.

The once-bizarre ritual of self-administering live bee stings is now second nature to me. Three mornings a week, I line up 10 insects on tweezers, then situate myself between two full-length mirrors that allow me to see my spine. I hold each bee to my back, one by one, until I feel the heat of its sting. I set a timer for 15 minutes, and when my phone dings, I pull the delicate stingers from my back. Then I get dressed and start my day.

BVT has been my lifeline, returning me to the world of the living after six months of being housebound — and one month of being bedridden — with a dizzying array of symptoms that only worsened in the time it took to get diagnosed. Though I am not yet fully well, the therapy has restored my ability to read, write, leave my house, socialize and work part-time, all of which the disease had stolen from me.

This is the outcome I had hoped for when I started stinging myself with bees. What I hadn’t anticipated was how discovering the online BVT community — a surprisingly extensive network of “stingers” scattered across the country, whom I located on Instagram and in dedicated Facebook groups — would reshape my life, connecting me with the empathetic internet strangers who would, in time, become my closest friends.

Within the nooks and crannies of the internet, I found other stingers who, like me, had lost everything. I “met” Sarah, in North Carolina, who was stinging along with her 21-year-old daughter; Candace, in California, who was stinging along with her 55-year-old mother; Valerie, in Colorado, whose years-long struggle with Lyme, she hoped, would finally end with bee venom treatment. As I shared more and more of my own trials on my Lyme account, these women — and many more — reached out in the comments and in my direct messages (DMs), holding space for me and letting me know I was not alone.

As I started to connect with my new friends — in DMs that migrated to texts, texts that turned into phone calls — I learned that my experience was anything but unique. Every Lyme sufferer I met had a similar story of being all but abandoned by friends, partners and even family members. And, like me, they had formed new and unshakable bonds with total strangers scattered throughout the country.

Fifteen months after starting to sting myself with live bees, BVT and the community I’ve found comprise a huge part of my life. Daily, as the therapy grows in popularity, I receive requests to help people gather their supplies and guide them through their initial sting: To date, I’ve mentored more than 20 new stingers. At the meetup I hosted in my apartment, we told our stories, commiserated over the realities of broken relationships and lives put on hold, but celebrated our shared strength and hopes for the future. As I locked the door behind the last guest and swept shards of grain-free tortilla chips from my floor, I took a moment to release some of the pain of the past few years and allow the warmth and sweetness of true communion to settle in my chest.

As I finish this essay, I’m sitting in a friend’s apartment in Koreatown in Los Angeles, bathing in the warm sunlight that’s absent during New York winters. I came out here to relax, eat some good food, and treat my still-healing body to some salty waves and hot sand. I’m waiting for my friend Juli to come pick me up; we’re going to hang out in her sauna and cook some organic eats. She’s a fellow Lyme sufferer whose support has been invaluable to me. This will be the first time we’ve met.

In a few days, I’ll pack my things — box of live bees included — and take a bus south to San Diego, where I’ll stay with Candace and sting with her mom, Tamara, who lives nearby. I found the two women online when I was at my worst, deathly ill and inconsolable. Late one night, many months ago, Candace prayed for me over the phone. I don’t believe in god and hadn’t had a single Christian friend until I connected with them, yet her words and solidarity soothed my soul. I’m looking forward to meeting Candace’s two young girls and playing with their pug, Pita, who, until now, I’ve only seen in photos and videos.

For as many things as my illness has stolen from me, it has also given me abundant gifts: an unexpected scholarly knowledge of bees, a deep connection to and appreciation of the natural world, an increased awareness of the harm humans have done to our shared home. It has also led me to the strongest, most uplifting and, I’m sure, the most durable friendships of my life. And as BVT continues to be a defining part of who I am, I look forward to connecting to many more like-minded people on the path to healing.