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Self in the darkness seem to me no realer than a dream: experiences of living with alopecia universalis across two cultures

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Abstract

Visible physical differences may have a variety of social and psychological effects. Complete hair loss on the scalp and body is a defining feature of the deforming disorder alopecia universalis (AU). The present study was conducted in order to gain some meaningful insights into cross cultural explanations of psychosocial consequences. The current research examined the lived experiences of males with AU in two different cultures—the United Kingdom and Pakistan. Participants from two diverse cultures were taken to compare and contrast the individual experiences in different social context. To understand the psychosocial experiences of males with AU, interpretive phenomenological analysis was used. Face to face in-depth semi-structured interviews were conducted with a volunteer sample of N = 12 men, n = 6 from Pakistan and n = 6 from UK having a formal diagnosis of AU. Five superordinate themes were emerged including: (1) Reactions (personal and social) (2) Impact (psychological and social) (3) Coping (cognitive and behavioral) (4) Adjustment and Rehabilitation and (5) Equilibrium /Growth (Psychological and spiritual). Men from UK tend to report stronger personal reactions. Pakistani men tend to experience social reactions such as stares, giggles and point blank questions from the public. Long term impact, coping process, adjustment and rehabilitation period reported by men with AU was quite similar across cultures. Having lived with AU for some period of time; men from UK getting more empathetic and compassionate whereas, Pakistani men developed gratitude over the years. Dermatologists must take into consideration the psychological requirements of those who have AU. Psychosocial interventions may be used to help patients by healthcare professionals, particularly psychologists. Future researches need to assess both men and women in order to address the impact of AU on people with different ages and sociodemographic backgrounds that will provide some insight into the significant effect of AU on individual’s wellbeing.

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Data availability

Due to study protocol and confidentiality, datasets created and/or analyzed during the current investigation are not publically available. However, the associated author can obtain codebooks and syntax for the data upon request.

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Acknowledgements

We would like to express our gratitude to Alopecia UK for helping us contact research participants in UK. We also thank Jinnah hospital and Services Hospital, Lahore.

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Authors and Affiliations

  1. Institute of Applied Psychology, University of the Punjab, Lahore, Punjab, Pakistan

    Rafia Rafique, Fatima Kamran & Afifa Anjum

  2. Division of Psychiatry and Applied Psychology, School of Medicine, University of Nottingham, Nottingham, UK

    Nigel Hunt

  3. Institute of Applied Psychology, University of the Punjab, Lahore, Lahore, Punjab, Pakistan

    Fatima Kamran & Afifa Anjum

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  1. Rafia Rafique
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  2. Nigel Hunt
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  4. Afifa Anjum
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Contributions

RR and NH participated in designing the study. RR and NH conducted semi structured interviews and transcribed the interviews. RR and FK analyzed the data. RR and AA drafted the manuscript. AA conducted one interview. All authors equally participated in developing the final manuscript.

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Correspondence to Rafia Rafique.

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Rafique, R., Hunt, N., Kamran, F. et al. Self in the darkness seem to me no realer than a dream: experiences of living with alopecia universalis across two cultures. Curr Psychol 43, 10148–10162 (2024). https://doi.org/10.1007/s12144-023-05144-5

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