Back in 2008, when I first watched the Lyme disease documentary Under Our Skin, I had to step out of the cinema. The sensory overload of a big-screen movie intensified my neurological symptoms from tick-borne illness. More profoundly, the film’s depiction of Lyme’s devastating physical and emotional impact resonated too closely with my own experiences. I was deeply unwell and fearful of being trapped indefinitely in the world the film portrayed.
Fifteen years later, viewing the new Lyme disease documentary, I’m Not Crazy, I’m Sick—which revisits the physical, emotional, and financial hardships of Lyme disease also explored in Under Our Skin—elicited a starkly different reaction. While the experiences of the patients in the film were still relatable, I observed them from a place of distance, having achieved remission.
The crucial factor that bridged the gap between my initial reaction in 2008 and my present perspective is precisely what I’m Not Crazy, I’m Sick passionately advocates for: comprehensive and appropriate support for Lyme disease patients.
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Through the personal narratives of the Mode family (pictured left), Ash Baker, the Cleworth family, and WNBA MVP Elena Delle Donne, I’m Not Crazy, I’m Sick powerfully illustrates the far-reaching devastation of Lyme disease across diverse lives. Whether grappling with barriers to accessing treatment or fortunate enough to receive top-tier care, patients from rural Maine to professional basketball courts share a common frustration: the invalidation of their illness. As Elena Delle Donne poignantly states in the film, “We all just want to be heard. We all come from different walks of life. We all have our own struggles.”
Regrettably, the voices of many individuals battling tick-borne illnesses are often unheard by doctors, families, friends, and insurance providers. As I’m Not Crazy, I’m Sick reveals, this dismissal can have profound consequences, leading to delayed treatment, financial instability, familial discord, mistrust in the medical establishment, and mental health challenges. Psychiatrist Dr. Robert Bransfield emphasizes the urgency, stating, “It’s tragic that we have all this suffering that could be prevented.”
“It’s just as much a human rights issue as it is a scientific issue. To pretend it doesn’t exist is a crime.”
Respected physicians and researchers, including Dr. Monica Embers, Dr. John Aucott, Dr. Mark Soloski, Dr. Steven Phillips, and Dr. Sean McCloy, MPH, MA, lend scientific weight to the reality of tick-borne illness, particularly in its chronic form, and underscore the needless suffering caused by a lack of understanding. Dr. Phillips powerfully asserts, “It’s just as much a human rights issue as it is a scientific issue. To pretend it doesn’t exist is a crime.”
During my own journey, I was repeatedly told that my symptoms were imaginary, and even after diagnosis, that my illness was not real. Like the patients featured in both Under Our Skin and I’m Not Crazy, I’m Sick, my fight for health was intertwined with a fight for validation. And I consider myself fortunate. Despite an eight-year struggle to obtain a diagnosis, a lengthy recovery period marked by a significant relapse, and debilitating symptoms that disrupted my life, I persevered. I was supported by family and friends and had access to medical care. While it took considerable time, I eventually received the support necessary to transition from merely surviving to truly thriving. My journey went from leaving a movie theater overwhelmed to watching a documentary with gratitude for my restored health.
However, I’m Not Crazy, I’m Sick poignantly highlights that countless patients are not as fortunate. Dr. Bransfield points out the heightened risk of suicide among individuals with chronic infections, explaining that Lyme disease presents a dual challenge: a social-psychological component of mental illness compounded by a physiological aspect stemming from neuroinflammation and its impact on brain chemistry. Former GLA CEO Scott Santarella speaks movingly about those tragically lost to suicide due to Lyme disease, and the patients in the film openly share their own experiences with dark thoughts.
I too experienced those dark depths during my most challenging periods of illness, and like Ash Baker, found creative expression to be a vital lifeline, helping to “bring me back to life.” Beyond coping mechanisms, patients desperately need hope—even small glimmers in what can feel like an endless darkness, as Santarella describes—and they require tangible physical, emotional, and financial support. Perhaps most fundamentally, they need to be believed.
I’m Not Crazy, I’m Sick serves as a powerful window into the authentic realities of living with Lyme disease. It provides crucial validation for patients and, importantly, educates those in a position to help—physicians, insurers, friends, and family—on how profoundly support, or the lack thereof, can shape a patient’s trajectory.
Produced by Sypher Studios and Fieldhouse Productions, I’m Not Crazy, I’m Sick premiered on May 30th.
The Global Lyme Alliance (GLA) offers extensive support resources for patients, including financial aid and peer support networks. Click here to explore these resources further.
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<span>The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. </span>
