Navigating the medical landscape with Long COVID is a daunting task, especially when patients feel dismissed by their own doctors. In a recent episode of the Still Here podcast, hosts Miles Griffis and Betsy Ladyzhets sat down with Dr. Zeest Khan—a physician, patient, and advocate—to discuss the harsh reality of living with this condition. Dr. Khan, a specialist in cardiothoracic anesthesiology, faced her own battle with Long COVID in 2020. Her journey from the ICU to the patient’s bed informs her current work on her Long COVID MD platform, where she bridges the gap between complex medical research and the daily, often grueling, experiences of those struggling for care.
The conversation highlights a systemic failure: the “medical home” for Long COVID simply doesn’t exist. Because modern medicine is hyper-specialized into organ-based silos—cardiologists, neurologists, and pulmonologists—patients with multi-systemic issues like Long COVID fall through the cracks. Dr. Khan points out that this isn’t necessarily due to doctor resistance, but rather a lack of infrastructure and clear guidance on where these patients belong. When a patient arrives with symptoms that don’t fit into a single, neat box, the healthcare system struggles to provide a home for them, leaving individuals to manage their own care, research their own symptoms, and advocate for their own treatment plans.
This necessity to self-advocate leads many patients to explore off-label treatments, often spurred by success stories they find on social media. Dr. Khan cautions against the “quick fix” mentality, emphasizing that while some off-label drugs are safe because they have been previously vetted by the FDA for other uses, they are not magic bullets. She encourages patients to look beyond anecdotal testimonials. Instead, she advises individuals to focus on the mechanism of a drug and to evaluate whether it actually addresses their specific, categorized symptoms. The process is exhausting, but for patients who feel ignored, it is often the only path toward finding relief.
A central theme of the discussion is the critical need for media and scientific literacy. In an era where “clickbait” medical content thrives, Dr. Khan provides a masterclass on how to evaluate research. Her approach is systematic: check the author’s credentials, ignore sensationalized headlines, and read the abstract to understand the study’s scope and limitations. She warns that “doom scrolling” through studies can be just as harmful as ignoring research entirely. Most importantly, she urges listeners to spot red flags in pseudoscience, such as the use of “all-or-nothing” language, vague references to “root causes,” or the misuse of terms like “neuroplasticity” as a pseudo-medical cure-all.
When it comes to engaging with healthcare providers, Dr. Khan suggests that patients prioritize building a relationship with a primary care physician who is a partner rather than an adversary. She acknowledges the emotional toll of medical gaslighting and the injustice of forcing sick, often debilitated individuals to do the heavy lifting of medical coordination. Her advice for those feeling overwhelmed is to “triage” their own symptoms. By focusing on the most pressing issues—whether that’s sleep, gut health, or psychological support—and bringing clear, research-backed questions to a supportive doctor, patients can reclaim a sense of agency, even within a broken system.
Ultimately, the episode serves as a reminder that the path to recovery is not just about finding the right pill, but about finding the right support and maintaining hope. The sense of isolation that comes with Long COVID is profound, but by sharing knowledge and fostering community, patients are creating their own informal network of care. As Dr. Khan notes, while the scientific community works to uncover the mysteries of this disease, those living through it must focus on what is sustainable for their own lives. By combining self-advocacy with a critical eye, patients can navigate the noise and focus on what truly matters: their health, their dignity, and the promise that they are not walking this path alone.