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In the Lyme Light
September 5, 2024

In the Lyme Light
Photos Evoke Silent Suffering of Chronic Lyme Disease
By Arvind Dilawar

Lying in the fetal position on a bed, sitting shirtless facing away from the camera, propped up nude atop a stool—photographer Jiatong Lu captures the subjects of her series Nowhere Land in outwardly vulnerable positions to suggest their inner turmoil, struggling with chronic Lyme disease. Typically marked by fatigue, headaches, and muscle pain, Lyme disease in the chronic (or post-treatment phase, as it’s also known) is distinguished by heart palpitations, brain inflammation, and extreme pain. “It feels like there’s a blowtorch directed at my lower back,” one of Lu’s subjects told Time magazine in a recent article about chronic Lyme.

According to the Dutchess County Department of Behavioral and Community Health, county residents contract tick-borne diseases such as Lyme at rates two to five times higher than residents elsewhere in upstate New York. Each year, there are about 250 new cases of Lyme disease per 100,000 county residents, which is five times higher than the statewide average. Altogether, about 20 percent of adults in the county have been diagnosed with Lyme disease at some point in their lives.

One of those Dutchess County residents diagnosed with Lyme disease is Lu herself. Originally from China, Lu came to the United States in 2014 to study photography at the School of Visual Arts in New York City. Following graduation, she moved to the Hudson Valley, where she still resides—and where she likely contracted Lyme disease in 2021.

“For a period of time, I could not walk, think, read, or sleep, and I suffered from severe headaches, brain fog, stiff neck, fatigue, joint pain, anxiety, and depression,” Lu says. “I completely lost the ability to perform even basic life tasks.”

Like others suffering from chronic Lyme disease, Lu saw little help from the standard course of treatment. According to the U.S. Centers for Disease Control and Prevention, 5 to 10 percent of those with Lyme disease face prolonged symptoms even after the usual regimen of antibiotics. The reasons for that remain unknown. 

In her search for alternatives that might ease her pain, Lu discovered a community of others suffering from chronic Lyme, whom she connected with and began to photograph. As the name of the series Nowhere Land evokes, they were all caught in an ambiguous state: unrelenting symptoms on one side, the obstinate medical establishment on the other, leading doctors, insurers, and even family dismissing their experiences. Lu hopes that her series will bring the visibility necessary for change to begin.

“While this project stems from my personal journey with Lyme disease, its scope extends far beyond my individual experience,” said Lu. “There are countless people silently suffering from this disease, sharing a journey that remains invisible to the public eye. Through each person’s unique story, I aim to paint a comprehensive picture, showcasing not only their struggles, but also shedding light on the systemic challenges within the U.S. medical system.”jiatongzoelu.com/Nowhere-Land