Communicating the Invisible: Communicated Sense-Making (CSM) and the Relational Burden of Autoimmune Illness

Abstract

Objective: The main goal of this study is to explore how women in Karachi, Pakistan, perceive relational barriers as they attempt to define and communicate their invisible autoimmune illness with family, friends and health care providers; utilizing Communicated Sense Making (CSM) and Memorable Messages (MMs) to provide insight into these perceived barriers.

Methods: Through a qualitative approach, Illness Narratives of women in Karachi, Pakistan were taken. By employing Communicated Sense Making (CSM) and Memorable Messages (MMs) to assess the barriers that existed for participants in articulating their illnesses to others; seven out of twenty respondents were selected through purposive sampling as case studies.

Results: The findings supported the notion that although some initial support was evident, it declined over time leaving many of the participants feeling socially isolated and rejected. In addition, it was found that when the participant's invisible suffering failed to be made visible as a result of futile attempts at sense making, it resulted in increased psychological distress.

Conclusion: Due to the erratic and often invisible nature of their symptoms, autoimmune diseases create significant relational burdens for those who have them. As they struggle to receive recognition for their suffering as humans, and not simply as patients or sick people. While effective communication and intentional support can be seen as mere addons to medical care, they are critical in lessening the psychosocial trauma experienced by those living with a chronic and invisible illness.