Illuminating the experiences of growing up and living with primary lymphedema: A life history study

Abstract

The purpose of this qualitative research study was to collect, preserve, and understand the life histories of young adults who grew up with and are living with primary lymphedema of the lower limbs in the United States and, in doing so, illuminate the ways in which lymphedema affects their lives within their sociocultural and medico-historical contexts. Developing the life histories of four women and one man, ages 19-40, who first experienced swelling as children and adolescents offered insight into the emotional, social, and physical consequences of their condition to the trajectories of their lives. Compelled by my emic perspective as a person living with primary lymphedema, I offer substantial autobiographical reflections on my positionality.

I analyzed data using inductive thematic analysis of independent narrators' life stories and then across cases. The three major findings are: 1) Striving to Matter To and For Others and Self; 2) Complexities, Complications, and Confusions: Life Difficulties along the Journey; and 3) Lymphie Conundrums: Grappling with Normalizing/Othering. The first includes sub-themes about mattering to significant others, healthcare providers, others with primary lymphedema, and to self. The second includes subthemes about the complexities of decongestive therapy and self-management, schooling, other chronic diseases, and other priorities that push lymphedema to the background, the complications of biographical disruption and transformative brushes with cellulitis, and lingering confusions about cause and heritability. The third includes sub-themes about stigmatization, rejection, and discrimination, hiding to pass as "normal" and its costs, and straddling the lymphie conundrum with clothing.

I used the findings to answer research questions about how the narrators make sense of living with the disease and negotiate emotional, social, and physical challenges while navigating relationships, school, work, and the healthcare system. I offer practice implications for counselors, educators, healthcare providers, lymphedema therapists, and advocacy organizations. I also provide implications for theory and research. This study illuminated a wide variety of experiences within the healthcare system that correspond to the emergence of lymphedema as an important medical agenda in the United States. It also makes visible the unique aspects of living with primary lymphedema that shape lives as well as limbs.