Nowhere Land
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Dates2022 - Ongoing
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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.