Studying the lived experience of patients with Neurofibromatosis in Iran in 2019 and comparing it with the cinematic sample

 
Extended Abstract
Introduction and statement of the problem:
The main objective of this paper is to offer an analysis of the “Elephant Man” movie to represent Joseph Merrick’s life.  It will also offer an analysis of the life of patients with neurofibromatosis in Iran, i.e. a study that was done in 2019. Neurofibromatosis is a genetic disorder of the skin and nervous system. It causes tumors to grow on nerves. The problems derived from neurofibromatosis are not only physical but it carries socio-psychological as well which affects the individual life of the patient. It is believed that some 26500 individuals are affected with neurofibromatosis in Iran. To reach the objective of such a study, the paper will provide answers to the following questions through a comparison between the above two narratives.  Have the stigmatization mechanisms changed? Which similarities do they have? What changes have occurred in the relationship between the physician and the patient? And finally, how is the world perceived through the body in these two narratives? It is necessary to note that the researcher has to use a movie that is made based on Joseph Merrick’s real life to reach a patient’s narrative of life in the 18th century because a first-hand narrative has not been available. The importance of this movie lies in the fact that after releasing it, a large number of community members identified the neurofibromatosis as the Elephant Man’s illness.
 
Theoretical background:
The paper uses Goffman’s concept of “stigma” and the concept of “Enfreakment” to illustrate some aspects of the research issue in order to how “social construction of stigma” takes place in the context of social interactions, on one hand. On the other hand, I refer to the concept of “body” in the mindset of phenomenologists such as Merleau-ponty to offer an understanding of the activists’ lived-experiences as I believe the lived world is perceived through the body. Finally, I can not disregard the fact that NF1 is studied in the medical field, and it requires one to understand the medical paradigms when confronted with the concept of illness, as it determines how to interact with the patients.  Nonetheless, it is also perceived here as a subject matter in the field of communication, something that I would like to address here.
 
Methodology:
In this research, the qualitative concept analysis method was used. First, I analyzed the “elephant man”. Then and after referring to the Iranian Neurofibromatosis Community and getting the patients’ consent, I launched an in-depth interview with 10 people who were affected by neurofibromatosis.  This continued until we reached theoretical saturation. At that point, the qualitative concept analysis was conducted on the interview texts.
 
Results and discussion:
The obtained concepts show that Joseph Merrick and Iranian patients in 2019 experience the “stigma and its consequences” and this experience is perceived based on the concepts such as “exclusion and elimination”, “otherness”, and “human rights violations”. The reification/objectiveness of patients in biomedicine also has overshadowed the relationship between Joseph Merrick and his physician. 
The concepts found in the Iranian patients’ narratives show that although the relationship between a patient and a physician is friendlier, the physicians place more emphasis on the physical aspect of the patient’s body for their examinations, and in some cases, the exclusion and elimination on behalf of the treatment staffs are observed. However, what is located in the center of the lived-experience of Merrick and Iranian patients about their lived-world is the body.  This is evident in the concepts of “hating the body’ and “alienation with the body” in Merrick’s bodily confrontation with the world and patients emphasizing on “tolerance of suffering caused by the condition of the body”. Finally, as each constructed concept which is challenged in the social context, the stigma resulted from NF1 has been challenged in Merrick’s and Iranian patients’ life as well, and meanwhile, they try to get their human individuality.
 
Conclusion:
Over time the socio-cultural exclusion and isolation related to the stigma of neurofibromatosis continue. The stigma consequences haven’t changed, only the way it is applied has changed. In the past, the exclusion and elimination were physical and the patient was lashed and was in chain. Today, however, the violence is symbolic and verbal. Over the years, these patients remain on the frontier of “other” and their human rights are violated. Finally, I argue here that cognition is something that leads to getting individuality and changing paradigms in medical sciences and decreasing the consequences of the stigma.
 
Prominent results:
The most important communication practices which can be done to reduce the consequences of stigma include paying attention to the lived-body in the patients; sympathizing with them; creating an equal relationship between a patient and a physician and enhancing the biomedical-psychological and social paradigm and introduce them to the society.
 
 
Keywords: neurofibromatosis, stigma, making it strange, objective body, lived body, medical paradigms. 
 
References

Ablon, J. (1995). ‘The Elephant Man’as ‘self ‘and ‘other’: The psycho-social costs of a misdiagnosis. Social Science & Medicine, 40(11).
Arp, R., Brace, P., Riches, S., Lee, S., Manning, R., Parciack, R., Gaughran, R. (2011). The Philosophy of David Lynch. University Press of Kentucky.
Barke, J., Coad, J., & Harcourt, D. (2016). The role of appearance in adolescents’ experiences of neurofibromatosis type 1: a survey of young people and parents. Journal of Genetic Counselling, 25(5).
Cipolletta, S., Spina, G., & Spoto, A. (2018). Psychosocial functioning, self‐image, and quality of life in children and adolescents with neurofibromatosis type 1. Child: Care, Health and Development, 44(2).
Defenderfer, E. K., Rybak, T. M., Davies, W. H., & Berlin, K. S. (2017). Predicting parent health-related quality of life: evaluating conceptual models. Quality of Life Research, 26(6).
Eisenberg, M. G., Griggins, C., & Duval, R. J. (1982). Disabled people as second-class citizens (Vol. 2). Springer Publishing Company.
Friedman, J. M. (2002). Neurofibromatosis 1: clinical manifestations and diagnostic criteria. Journal of Child Neurology, 17(8).
Habif, T. P. (2015). Clinical Dermatology E-Book: A Color Guide to Diagnosis and Therapy. Elsevier Health Sciences.
Hummelvoll, G., & Antonsen, K. M. (2013). Young adults’ experience of living with neurofibromatosis type 1. Journal of Genetic Counselling, 22(2).
Kodra, Y., Giustini, S., Divona, L., Porciello, R., Calvieri, S., Wolkenstein, P., & Taruscio, D. (2009). Health-related quality of life in patients with neurofibromatosis type 1. Dermatology, 218(3).
Lehtonen, A., Howie, E., Trump, D., & Huson, S. M. (2013). Behavior in children with neurofibromatosis type 1: cognition, executive function, attention, emotion, and social competence. Developmental Medicine & Child Neurology, 55(2).
Link, B. G., & Phelan, J. C. (2006). Stigma and its public health implications. The Lancet, 367(9509).
Mayring, P. (2014). Qualitative content analysis: theoretical foundation, basic procedures, and software solution.
Merleau-Ponty, M. (1945). 1962: Phenomenology of Perception, trans. C. Smith. London: Routledge.
Murphy, R. F. (2001). The body silent. WW Norton & Company.
Nettleton, S., & Watson, J. (2002). The body in everyday life. in the body in everyday life (pp. 11–34). Routledge.
Qualtere-Burcher, P. (2011). Re-thinking the Doctor-Patient Relationship: A Physician’s Philosophical Perspective. University of Oregon.
Richardson, N. (2016). Transgressive Bodies: Representations in film and popular culture. Routledge.
Schwetye, K. E., & Gutmann, D. H. (2014). Cognitive and behavioral problems in children with neurofibromatosis type 1: challenges and future directions. Expert Review of Neurotherapeutics, 14(10).
Thomson, R. G. (1996). Freakery: Cultural spectacles of the extraordinary body. NYU Press.
Thomson, R. G. (2017). Extraordinary bodies: Figuring physical disability in American culture and literature. Columbia University Press.
Uhlenhake, E., Yentzer, B. A., & Feldman, S. R. (2010). Acne vulgaris and depression: a retrospective examination. Journal of Cosmetic Dermatology, 9(1).
Upadhyaya, M., & Cooper, D. N. (2013). Neurofibromatosis type 1: molecular and cellular biology. Springer Science & Business Media.
Vranceanu, A.-M., Merker, V. L., Park, E., & Plotkin, S. R. (2013). Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature. Journal of Neuro-Oncology, 114(3).
Wyatt, N. (1991). Physician-patient relationships: What do doctors say? Health Communication, 3(3).
Zola, I. K. (1985). Depictions of Disability-Metaphor, Message, and Medium in the Media-A Research and Political Agenda. Social Science Journal, 22(4).