Nowhere Land

  • Dates
    2022 - Ongoing
  • Author
  • Location New York, United States

My current ongoing project, Nowhere Land, focuses on Chronic Lyme disease, a condition I contracted in 2021. Through photography, text, and archival materials, I document the personal stories of individuals living with this invisible illness.

Nowhere Land explores the silent epidemic of chronic Lyme disease and Tick-borne illnesses in the United States. Through intimate narratives, it captures the silent suffering, daily battles, and emotional isolation endured by individuals living with this invisible and debilitating condition.

In 2021, I developed a series of alarming symptoms—severe fatigue, headaches, brain fog, stiff neck, nerve and joint pain, insomnia, and overwhelming depression and anxiety. These symptoms led to a diagnosis of Neurological Lyme disease. unfortunately, the standard treatment suggested by the CDC did not provide any relief from my symptoms. When overwhelmed by a deep sense of hopelessness, I accidentally discovered a substantial Lyme community online—a community that had long remained invisible to the public eye and had endured mistreatment for decades. Motivated by the stories of individuals, I started my ongoing project, Nowhere Land, in 2022.

According to the CDC, around 476,000 people in the United States are diagnosed and treated for Lyme disease annually, excluding a significant number of misdiagnoses. Many patients are misdiagnosed due to inaccurate testing and misleading CDC information during the early stages. Besides coping with their symptoms, chronic Lyme patients often have to deal with the inability to work or attend school, isolation from family and friends, trauma from medical abuse, and tremendous financial pressure, as the CDC and insurance companies do not acknowledge the existence of chronic Lyme. Countless Lyme patients are dismissed and blamed, their pain invalidated, their suffering is deemed as merely in their heads. For decades, they have been waiting for an answer from the medical system. They are angry, they are afraid, they feel betrayed by their own bodies, they feel isolated, unseen, and unheard, as if trapped in the middle of nowhere.

*On October 25, 2023, the CDC updated its website page on "Chronic Symptoms Following Infections" to acknowledge that, similar to some other infections such as COVID-19, chronic symptoms can persist after Lyme disease infection and courses of treatment.

This change might have some impact on CDC guidelines for Lyme Disease, medical research, tests, and treatments for chronic Lyme disease. It might potentially influence insurance policies regarding chronic Lyme disease treatment in the future.

© jiatong lu - Image from the Nowhere Land photography project
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At 33, a tick bite brought severe neurological symptoms, confining Shivani to bed almost constantly. Despite intensive treatment, she spent 1.5 years isolated in a room without sunlight, nature, or human contact.

© jiatong lu - Image from the Nowhere Land photography project
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Michelle, diagnosed with chronic Lyme disease 8 years ago, lives in a government apartment filled with mold, exacerbating her condition. Despite seeking assistance from government agencies and family, online peers suggest relocating, even to a tent.

© jiatong lu - Image from the Nowhere Land photography project
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Cody, a father of five, has battled severe Lyme disease symptoms for years. In 2016, he, his wife Rose, and two older kids were diagnosed with Lyme disease, while three other children display symptoms.

© jiatong lu - Cody's wheelchair and the medications he has used in the past several years.
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Cody's wheelchair and the medications he has used in the past several years.

© jiatong lu - Image from the Nowhere Land photography project
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Sun, diagnosed with Lyme disease at age 6, inherited it from her parents. Since birth, she's coped with facial asymmetry, growth issues, sensory problems, excruciating leg pain, and eating challenges.

© jiatong lu - Image from the Nowhere Land photography project
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Beau, 12, diagnosed with Lyme disease at 9, exhibits symptoms of tics, anxiety, depression, rage, OCD, and sleep disorders. His brother, 8-year-old Everett, hasn't been diagnosed with Lyme disease but shows suggestive symptoms.

© jiatong lu - Image from the Nowhere Land photography project
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Sue has grappled with Lyme disease for decades, facing disability since a delayed diagnosis in 2014 despite being bitten by a tick in 1994. The illness has isolated her, left her unsupported, unable to work due to severe pain, depression, and anxiety.

© jiatong lu - Image from the Nowhere Land photography project
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After a decade-long battle with neurological Lyme disease, Audrey started the bee venom therapy and has been undergoing treatment for over two years, resulting in significant improvement in her condition.

© jiatong lu - Syd stands in her bedroom surrounded by the supplies for her daily home infusions and injections.
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Syd stands in her bedroom surrounded by the supplies for her daily home infusions and injections.

© jiatong lu - Image from the Nowhere Land photography project
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Similar to many coping with chronic Lyme disease, Sue grapples with hefty medical bills and significant financial strain. This financial burden forces numerous individuals, including Sue, to discontinue treatment due to overwhelming financial hardships.

© jiatong lu - Image from the Nowhere Land photography project
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Nicholas lies in bed. As the illness aggressively progressed, Nicholas became physically and mentally debilitated. Unable to afford treatment, he faced homelessness, initially living in a tent and now residing in a bar without heat or running water.

© jiatong lu - Image from the Nowhere Land photography project
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Yvette was diagnosed with Lyme disease in 2018, a debilitating illness that left her constantly sick and in constant pain. Yvette has had to undergo thirteen surgeries to help her walk and alleviate widespread symptoms and pain.

© jiatong lu - Image from the Nowhere Land photography project
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Yvette experiences intense pain in both her arms and every joint of her hands; even simple tasks like writing pose a significant challenge for her.

© jiatong lu - Image from the Nowhere Land photography project
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Barbara has been battling Lyme symptoms since childhood, but wasn't diagnosed until she was 43. Losing her job due to her disability, she now resides in a government housing apartment plagued by drug activities, leaving her feeling extremely unsafe.

© jiatong lu - Image from the Nowhere Land photography project
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Ryan, diagnosed with autism at two, saw no improvement despite treatment. His mother, an educator in autism, questioned the diagnosis. Testing revealed a positive result for Bartonella infection, a tick-borne bacterial disease.

© jiatong lu - Image from the Nowhere Land photography project
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Sandy and her daughter Annie both have chronic Lyme and tick-borne diseases. Annie experiences severe hallucinations from neurological infections. When Annie is troubled by hallucinations, Sandy reassures her, saying, “It's not real. Don’t be afraid.”

© jiatong lu - Image from the Nowhere Land photography project
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After the doctor informed him that his illness was incurable, Buck walked despondently towards the lake in the park where he grew up. Buck has battled severe Lyme disease symptoms since 2018, forcing him to leave his beloved career as a filmmaker.

© jiatong lu - Image from the Nowhere Land photography project
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The Horowitz Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome) Questionnaire and a rejected letter from the SSA (the United States Social Security Administration)

© jiatong lu - A letter from a Lyme Clinic, Syd's journal, and rejected letters from the insurance company.
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A letter from a Lyme Clinic, Syd's journal, and rejected letters from the insurance company.

© jiatong lu - Sue's collection of books related to Lyme disease and her medical report.
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Sue's collection of books related to Lyme disease and her medical report.

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