Nowhere Land (ongoing project)
Nowhere Land
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.
无依之地
《无依之地》探讨了当代美国社会中被严重忽视的慢性莱姆病患者群体的生存状况。通过私密的叙述，记录了这些患者所长期承受的不为人理解的病痛，生活困境与情感疏离。
2021年，我的身体突然出现了一系列不可思议的症状，主要包括严重疲劳、头痛、脑雾、肌肉僵硬、关节疼痛、神经刺痛、失眠，以及难以承受的抑郁和焦虑。基于这些症状，我被诊断患有神经系统莱姆病，并接受了美国疾病控制与预防中心（CDC）提供的标准莱姆病治疗。然而，在治疗过程中，我的症状并没有得到缓解，反而持续加重恶化。在感到绝望和无助时，我意外发现了一个隐藏在社会中的庞大慢性莱姆病患者群体。在与他们的交流中，我受到许多个体故事的启发，并于2022年开始拍摄项目《无依之地》。
据CDC统计，在美国每年约有476,000人被诊断并接受莱姆病治疗，这其中不包括大量被误诊的病例。由于CDC提供的测试不准确和误导性信息，许多患者在早期发病阶段被误诊，从而错失最佳治疗时间。除了应对病情日益恶化之外，他们还常常面临失业或被迫终止学业的困境、来自亲人和朋友的误解、医疗不公所带来的创伤，以及由于CDC和保险公司不承认慢性莱姆病的存在而产生的巨大经济压力。无数患者的痛苦被忽视，甚至被指责他们的病痛是来自于他们的想象。数十年来，慢性莱姆病患者一直在等待医疗体系重视他们的病痛，并提供更有效的治疗方案。他们愤怒，他们害怕，他们感到被自己的身体所背叛，感到孤立无援，他们的声音不被听见，仿佛被困在一座看不见的孤岛中。
*2023年10月25日，CDC更新了有关“感染后慢性症状”的页面。承认莱姆病和COVID-19等其他疾病一样，在感染和常规治疗后可能会出现慢性症状。这一变化或许会对CDC关于莱姆病的治疗指南和医学研究产生一定影响，并有可能在未来影响有关慢性莱姆病治疗的保险政策。
