18 new york | july 22–august 4, 2019

One son wound up in the

infirmary at boarding school,

unable to lift his leg. Another

had to have the fluid drained

from his knee. Murray was con-

stantly taking herself or her hus-

band or one of her kids to a doc-

tor—but none of the doctors

ever had answers, nor did they seem especially interested in finding

any. So Murray took the search upon herself. In The Widening

Circle, her 1996 memoir, she reproduces extracts from her diary

(“Monday, July 28: Todd had a fever of 100 again for two days and

a severe jaw ache; he said it hurt to open his mouth ... The attack

lasted for five days”). The record Murray gathered is a testament to

both the relentlessness of the symptoms and her own relentlessness

in tracking them. Her husband compares her to “the lonely hero of

a Hitchcock movie”: isolated, embattled, and disbelieved.

Soon, though, Murray started to hear other stories like hers. Her

area, it appeared, had a cluster of juvenile-rheumatoid-arthritis

cases. She called the state’s health department and met with Dr.

Allen Steere, a rheumatologist doing a fellowship at Yale. He pored

over her pages of notes. On the car ride home, Murray wept with

joy: Steere didn’t have any answers, but he had listened. He wanted

to find out what was wrong. By 1976, the condition Murray had

observed had become known as Lyme disease.

“Lyme disease was a disease born of advocacy,” Dr. Paul

Auwaerter told me. Auwaerter, whose lab focuses on Lyme and

other tick-borne diseases, is the clinical director of the Division of

Infectious Diseases at Johns Hopkins University School of Medi-

cine. Back in the ’70s, Murray and her fellow Connecticut mothers

had to fight for attention. Their experience left behind a powerful

legacy, Auwaerter said, a sense that perhaps “the medical establish-

ment didn’t really listen initially or were trying to be dismissive.”

Decades after Polly Murray kept her diary of symptoms, the

spirit of advocacy associated with Lyme disease endures. But

while Murray’s efforts were ultimately vindicated by medical sci-

ence, a new fight—for the recognition of something known as

“chronic Lyme,” which can encompass a vast range of symptoms

and need not be linked to any tick bite—has grown into a phe-

nomenon often untethered from scientific method or peer review.

The chronic-Lyme community has a new agenda, one that was

visible at last fall’s Global Lyme Alliance Gala in New York, where

supporters gathered at Cipriani heard a speech from Real House-

wife of Beverly Hills Yolanda Hadid.

On the show, Hadid’s diagnosis had became a major plotline; it

represented a breakthrough moment in pop-culture Lyme-disease

awareness. Two of her children, the models Bella and Anwar Hadid,

also have Lyme diagnoses. They join an assortment of famous and

fame-adjacent spokespeople who have “opened up” about Lyme:

Avril Lavigne, Kelly Osbourne, Ally Hilfiger, Crystal Hefner, and

Rob Thomas’s wife, Marisol. Hadid’s speech at the gala was brief—

she was in the midst of a relapse, she said, so she hadn’t really been

able to write anything—but the hardest part about having Lyme

disease, she told the crowd, was people not believing she had Lyme

disease. “My biggest struggle every day was people telling me that

maybe I have Munchausen disease,” Hadid said. “ ‘How can she look

so beautiful and be so sick?’ ‘How can she be in bed seven days a

week and then show up to work?’ Well, I did,” she said. And then,

to applause, “Because I’m a badass Dutch girl. But it wasn’t easy.”

This is the rallying cry of the Lyme Warrior. Spend a while brows-

ing #lymewarrior on Instagram and what you find looks like well-

ness content at first. There are selfies, shots of food, talk of toxins,

exhortations toward self-care. There are more extensive arrays of

supplements than you might expect. Then the IVs snake into view.

There are hospital gowns and seats at outpatient-treatment centers

and surgically implanted ports displayed with pride. This is well-

ness predicated on the constant certainty that all is not well. Like

Hadid, the Lyme Warriors struggle against those who would doubt

their condition, and, like Hadid, they are firm in their resolve. They

have a name, and they have each other.

Where Murray sought to answer a question, the warrior who

now takes up the cause of chronic Lyme is seeking to affirm an

answer. For this community of patients, Lyme has come to function

as something more expansive than a diagnosis. While Lyme disease

is a specific medical condition—one that may manifest more

severely or less, be treated more easily or less—chronic Lyme is

something else altogether. (The medical establishment generally

avoids using the term chronic Lyme, and because of this establish-

ment wariness, advocates who believe Lyme is a chronic infection

now sometimes advise patients to avoid it too.) This version of

Lyme has no consistent symptoms, no fixed criteria, and no accu-

rate test. This Lyme is a kind of identity. Lyme is a label for a state

of being, a word that conveys your understanding of your lived

experience. Lyme provides the language to articulate that experi-

ence and join with others who share it. In the world of chronic

Lyme, doctors are trustworthy (or not) based on their willingness

to treat Lyme. Tests are trustworthy (or not) based on their ability

to confirm Lyme. Lyme is the fundamental fact, and you work back-

olly murray, in the 1960s and ’70s, was a mother of four

with an old house on several acres in Lyme, Connecticut.

In the summer, her kids built forts in the woods; they ice-

skated on frozen cow ponds in the winter. The Murrays

had an idyllic life in the country. They also had enormous

rashes, strange joint swellings, and recurrent fevers.

P