“We’re going to stop the gaslighting right now”: How I’m fighting back as a Black woman with Long COVID

Long COVID has left me grappling with a myriad of debilitating symptoms, including cognitive dysfunction and severe seizures. Despite prior experience in public health, I have faced numerous challenges in obtaining adequate care. My standard poodle Sally, trained as a service dog, has become my lifeline. She assists me with my cognitive dysfunction and postural orthostatic tachycardia syndrome (POTS).

When my heart rate or blood pressure spikes, Sally alerts me by pawing or licking me, prompting me to sit down. Upon regaining clarity, Sally performs deep pressure therapy, lying on top of me to stabilize my body and lower my heart rate and blood pressure. This unspoken partnership is a testament to the power of a service dog. The unpredictable nature of my seizures, often accompanied by cognitive dysfunction, has made managing my health a constant struggle.

Frustrated by dismissive encounters with medical professionals, I cried after receiving a clinical note that labeled me as resistant to treatment. In response, I made it clear that I would no longer tolerate such gaslighting. This sentiment reflects the broader experience of many individuals living with Long COVID, who must advocate for their own health care.

My background in medical education and public health has given me insight into how health systems are supposed to function, but navigating the current system has proven to be a daunting task. Each appointment, record, and follow-up demands unwavering attention, a burden that is often too heavy for those suffering from chronic illnesses.

The impacts of Long COVID extend far beyond my physical health. It has taken away my athletic pursuits, my social life, and my overall sense of well-being.