"POTS equals uncertainty": exploring uncertainty and privacy management of people with Postural Orthostatic Tachycardia Syndrome (POTS)

Abstract

Postural Orthostatic Tachycardia Syndrome (POTS) is a rare, incurable, and invisible disability. POTS is an understudied illness in the medical field and even more so in academia. The importance of studying the experiences of people with POTS is to improve the way these individuals, and others with invisible disabilities, negotiate privacy and uncertainty. Privacy and uncertainty are particularly worthy of investigation in studying POTS because people with POTS have to negotiate large amounts of uncertainty and disclosures. This study sought to use the lens of uncertainty and privacy management along with emergent themes. Twenty-four in-depth interviews were conducted. Participants hailed from North America and Europe. Findings of this study revealed complex and dynamic negotiations of privacy and the management of uncertainty. Participants explained they attempt to disclose only vague explanations of their illness to most people because people do not understand. There was deep and profound uncertainty surrounding pre-diagnosis, prognosis, treatment options, and symptoms. Participants also had a hard time deciding when and how to disclose their POTS. Uncertainty about reactions and understandings to disclosure played a role in complicating decisions on whether and how to disclose. Invisible disabilities pose distinct and specific challenges that can build theory to include unconsidered voices and experiences that complicate previous scholarship. This study revealed more avenues to be explored going forward.