Lived experiences and perspectives of persons with conditions marked by autonomic dysfunction

Background: Persistent autonomic dysfunction disrupts homeostasis and promotes pathological processes underlying several major chronic conditions including cancer and cardiovascular disease. Little is known about the lived experience of individuals living with conditions marked by autonomic dysfunction. Objectives: To understand the lived experiences and perspectives of individuals with conditions characterized by autonomic dysfunction. Methods: A mixed method, cross sectional study was conducted with individuals (n = 489) with conditions marked by autonomic dysfunction, with a focus on recruiting from marginalized populations. Participants completed a survey exploring symptoms and experiences with seeking and receiving care for conditions and symptoms marked by autonomic dysfunction. A subset of 45 participants also completed semi-structured interviews. Results: At the healthcare system level, participants were concerned about provider availability and a lack of support for patients and providers. At the provider level, participants had negative experiences with dismissive providers and positive experiences when providers believed patients. At the patient level, patients reported that anxiety, depression, sleep problems, brain fog, and fatigue were their most common symptoms, and that they often reduced work hours or stopped working. Patients described using their own research more often than provider recommendations to seek wellness treatments. Conclusion: The lived experience for people with autonomic dysfunction is multilayered, includes the patient’s personal experience, and is influenced by the patient-provider relationship embedded in unsupportive healthcare systems. These experiences may reinforce the physiological dysregulation at the core of many condition and symptoms, potentially exacerbating a feedback loop of distress, invalidation, mistrust, avoidance, and increased vulnerability.