Research Study of the Lived Experience of Alopecia Areata for Women During Early Adulthood.

Abstract

Objectives: Alopecia areata (AA) is an autoimmune condition that causes baldness in men and women; however, it may be especially distressing for women given social standards and expectations for beauty. This sporadic condition can present with various extents of hair loss that unexpectedly relapse or remit across time. The present phenomenological study aimed to describe the lived experiences of early adult women with AA who developed it in pre-adolescence or adolescence, to provide greater understanding of the experience of having AA over time. Method: The present study is guided by phenomenological methods, including interpretive phenomenological analysis. Following in-depth, semi-structured interviews with six female participants ages 27-36 with current, active AA, who developed their AA between ages 10-16, data were transcribed and analyzed at an individual and general (i.e., cross case) level for themes. Results: Responses to initial awareness of AA or increasing hair loss were not uniform, with participants’ psychological experiences ranging from not being bothered to life-altering and devastating. Physical sensations and visual reminders of increased hair loss can pull participants out of their everyday experiences, with possible helplessness regarding inability to stop the loss. Losing hair was sometimes experienced as a deep emotional loss, and was sometimes so devastating that years felt “dark” or “lost.” Participants encountered uncertainty regarding when their hair might fall out, as well as unpredictability with others’ reactions. Participants often experienced normality with friends and family, but occasional rejection and derision from others led to certain spaces or situations feeling unsafe for revealing AA. Participants often concealed their AA with various approaches, including wigs or hair pins, which might lead to self-consciousness about the AA or wig being discovered. At some point, these routines become “automatic.” Disclosing about AA to others increased vulnerability and openness, which might have negative (e.g., fear of negative reactions) and positive (e.g., deeper relationships) implications. The threat of AA being incidentally discovered can be distressing even after decades of having AA, but for some, making an intentional choice to reveal AA (e.g., openly telling others, not wearing a wig) led to freedom and comfort with the tradeoff of possible increased attention through stares or questions. Discussion: AA impacts individuals’ lives in a variety of ways, and the impact can differ across time, situations, and relationships. AA can produce a great deal of distress that persists after more than a decade of living with it. For others, AA is less distressing. Psychologists and other providers might best serve individuals with AA by better assessing their individual experiences of the condition. Future research might investigate the process of how some individuals with AA come to greater acceptance of or appreciation for their AA.