Fish soup for the falling sickness: Tracing epilepsy through Hmong and Western beliefs

doi:10.1016/j.yebeh.2020.107725

Epilepsy & Behavior

Volume 115, February 2021, 107725

https://doi.org/10.1016/j.yebeh.2020.107725 Get rights and content

Highlights

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Spiritual theories in Western antiquity ascribed seizures to sin and possession.
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Seizures in Hmong culture reflect elevated levels of spirituality.
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In Hmong culture, persons with epilepsy (PWE) are often a source of pride for a family.
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Stigma affecting PWE remains.
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This history may have present-day implications as it pertains to stigma.

Abstract

Hmong communities originated in China but today are located across the globe. Salvation, health, and well-being in Hmong tradition are contingent upon pleasing spirits and ancestors. While most diseases are believed to reflect the displeasure of spirits and ancestors, epilepsy is unique in that it portends a heightened capacity for achieving an elevated level of spirituality, which has led it to be deemed honorable by Hmong society members. This stands in stark contrast to some contexts within which epilepsy has been historically understood in the West in which the disease was believed to originate from sin and evil. If and how societal response toward persons with epilepsy (PWE) in Hmong communities differ from that in other Western communities in a way that parallels these differences in beliefs regarding the etiology and significance of the seizures is unknown. Understanding this may have implications that guide efforts in combatting stigma affecting PWE.

Section snippets

Introduction to the Hmong people and belief

The Hmong (pronounced [mong], meaning “free”) are a nomadic mountain-dwelling people that originated in the Yangtze and the Yellow River valley in China but ultimately became geographically international as a consequence of their tumultuous geopolitical history which came to be known as the Hmong diaspora

Epilepsy in Hmong versus Western belief

While etiology of and treatment for symptoms in conventional medicine and traditional Hmong medicinal practices usually differ, both typically operate under the shared assumption that the symptoms are undesirable. Epilepsy is an exception to this general paradigm. Epilepsy is known as “quag dab peg, which means ‘the spirit catches you and you fall down’” [5]. It is believed to be the marking of the txiv neeb (pronounced [see neng]), or shaman, who are revered as healers and soul finders chosen

Stigma affecting persons with epilepsy

Though understanding of epilepsy today is far beyond what prevailed in antiquity, reformation of the associated stigma has lagged behind. Negative attitudes toward PWE have certainly improved with scientific and treatment advancements, especially with fervent efforts by advocacy chapters of organizations such as the International League Against Epilepsy and International Bureau for Epilepsy, but evidence suggests prejudice against PWE remains [7]. A systematic literature review of works

Concluding remarks

In The Spirit Catches You and You Fall Down, a description of a fish soup recipe is used as a metaphor to convey a central theme in Hmong tradition: interconnectedness. It highlights that every being is a manifestation of a complex intersection of seemingly minute occurrences. The essence of this metaphor is a lesson from Hmong tradition that extends to modern clinical care: healthcare practitioners ought to appreciate patients as well as the state of the present itself as such amalgams.

There

Acknowledgments

None.

Statement of ethics

Not applicable.

Disclosure statement

Nadia Khalil has nothing to disclose. Stephanie McMillan has nothing to disclose. Selim Benbadis (last three years): Consultant for Brain Sentinel, Cavion, Ceribell, Eisai, Greenwich, LivaNova, Neuropace, SK biopharmaceuticals, Sunovion. Speakers’ Bureau for Eisai, Greenwich, LivaNova, and Sunovion. National Medical Director for RSC Diagnostic Services (EEG). Florida Medical Director of Stratus/Alliance (EEG). Member: Epilepsy Study Consortium. Grant support from Biogen, Brain Sentinel, Cavion,

Funding sources

This study was not funded.

Author contributions

Nadia Khalil: major role in contributing to content in paper and revising the manuscript for intellectual content. Stephanie McMillan: major role in contributing to content in paper and revising the manuscript for intellectual content. Selim Benbadis: major role in contributing to content in paper and revising the manuscript for intellectual content. Derrick Robertson: major role in contributing to content in paper and revising the manuscript for intellectual content.

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There are more references available in the full text version of this article.

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Validity and reliability of the Chinese version of the disease-related fear scale in patients with epilepsy
2023, Epilepsy and Behavior
This study aims to test the validity and reliability of the Chinese version of the Disease-Related Fear Scale (D-RFS) in order to understand the experience of fear in patients with epilepsy (PWE).
The researchers obtained translation permission and followed international guidelines to develop a Chinese version of the D-RFS. A total of 609 PWE were recruited from a general tertiary hospital in Hangzhou, China, between January 2023 and June 2023. We evaluated the psychometric properties of the D-RFS, including content validity, reliability, test–retest reliability, internal consistency, and construct validity.
Exploratory factor analyses (EFA) and confirmatory factor analyses (CFA) were conducted on two separate samples with a sample size of 307 and 302. The results of EFA indicated that the scale could be divided into three dimensions, which were supported by the structure in CFA. We named the three dimensions as follows: “fear of seizure consequences”, “fear of poor epilepsy management”, and “fear of social restrictions”, respectively. The Cronbach’s alpha coefficient for the entire scale was 0.960, with a coefficient of 0.907, 0.953, and 0.917 on three dimensions.
The Chinese version of the D-RFS was found to be an effective and reliable tool to measure the experience of fear in adult PWE in China. The study could lay the foundation for future investigations to explore associated factors of epilepsy-related fear and establish intervention strategies to alleviate patients’ fear in clinical practice.

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Brief CommunicationFish soup for the falling sickness: Tracing epilepsy through Hmong and Western beliefs