Epilepsy is one of the most prevalent neurological disorders that impacts individuals across various demographic and socioeconomic groups, ethnicities, and geographic regions. According to the International League Against Epilepsy (ILAE), epilepsy is defined as at least two unprovoked seizures occurring more than 24 hours apart, a single unprovoked seizure with a recurrence risk of at least 60% over the next ten years, or a recognizable epileptic syndrome.
According to World Health Organization (WHO), approximately 50 million people are living with epilepsy throughout the globe, of which 10–12 million are living in India. 80% of People with Epilepsy (PWE) live in low- and middle-income countries. Importantly, the incidence of epilepsy varies significantly across nations, based on the geographical distribution of risk and etiologic variables, the frequency of seizures at diagnosis, and whether ongoing epilepsy (active prevalence) or cases in remission are considered (lifetime prevalence).
Numerous studies have confirmed the relationship between epilepsy and psychological disorders such as depression, anxiety, and, in some cases, psychosis. Other psychological concerns linked to epilepsy include personality changes in terms of thoughts and behaviour, suicidal tendencies, agitation, and mood swings. People with Epilepsy are prone to worry, uneasiness, and restlessness because of their heightened fear of experiencing a seizure at any time or location. This fear can significantly impact their daily lives and overall well-being. Surprisingly, these mental health conditions often remain undetected and untreated in many countries, worsening seizure control and increasing the severity of epilepsy.
After receiving an epilepsy diagnosis, a person may experience guilt, fear, uncertainty, feelings of estrangement, and a loss of hope for a full recovery. Amidst such profound feelings and discontentment, the person finds themselves contemplating the meaning and essence of their life. The line of thinking tends to revolve around questions such as "Why me?" "Why should I suffer?" "What really is the point of living with an epilepsy condition?" "None can help me," "I am punished," "It's a terrible sin," and they may even criticize their family members for their neurological disorder, all of which results in shame, hopelessness, frustration, and irritability in the individual and further increases the risk of committing suicide.
Risk factors for emotional distress among PWE include, but are not limited to, social well-being, employment, education, and marital status. In an educational setting, a child diagnosed with epilepsy may choose not to attend an academic institution, such as college or school, due to the fear of having seizures on campus and the potential negative responses from their peers or teachers. This can result in feelings of social anxiety and loneliness. As a result of learning that their child has epilepsy, parents also suffer from stress and anxiety. Overprotective parenting becomes the norm when parents' anxieties or fears develop. Parent-Child Relationships are harmed when the child becomes a young adult and exhibits troublesome dependent behaviour, resulting in a deterring Parent-Child connection.
PWE experiences difficulties in finding employment. One of the main reasons was observed to be the employer's mindset, even though the Indian Constitution strictly highlights that PWE can obtain a job opportunity without being denied because of epilepsy. However, the law also mentions that if the nature of the job necessitates a "fit" individual, a state can restrict the employment of medically unfit individuals.
Finding a suitable life partner is difficult and stressful, but the Marriage Laws (Amendment) Act (No. 39 of 1999), which took effect in December 1999, emphasizes that PWE have all legal rights to marry. The elderly have a high frequency of epilepsy. Poor quality of life worsens neuropsychological health, cognitive impairment, social isolation, and low self-esteem. Substance dependence exacerbates the individual's epileptic condition.
There are myths about epilepsy being contagious, despite ample research to the contrary. Due to widespread discrimination, socialization becomes a struggle for a PWE, leading to impaired interpersonal skills, low self-esteem, a lack of enthusiasm for enjoyable activities, and thus complete isolation from the social world. Moreover, some cultures or faiths believe it is a spirit possession within the individual and refuse appropriate evidence-based medical treatment, thereby complicating the condition.
Meanwhile, there is a high-priority need to educate the public about the stigma and prejudice related to epilepsy through various programs and initiatives. Prerequisite screening for psychological concerns must be addressed immediately after the diagnosis of epilepsy by medical professionals, in hospitals or clinics, for compelling treatment outcomes. Furthermore, a holistic therapeutic approach that considers biological, psychological, and social factors from the lens of an individual's culture and understanding of themselves would increase therapeutic efficacy and reduce treatment gaps. Additionally, this would decrease the severity of epilepsy while improving the quality of life for the individual.
Cite this Article
Balasubramanian G. (2023, December 25). Cerebral Rhythms: Psychological Perspectives on Living with Epilepsy. InPsych Health. https://www.inpsychhealth.com/post/cerebral-rhythms-psychological-perspectives-on-living-with-epilepsy
References
1. International League Against Epilepsy (ILAE). (n.d.). Definition of Epilepsy 2014. Retrieved December 24, 2023, from https://www.ilae.org/guidelines/definition-and-classification/definition-of-epilepsy-2014
2. Fisher, R. S., & Bonner, A. M. (2018). The revised definition and classification of epilepsy for Neurodiagnostic technologists. The Neurodiagnostic Journal, 58(1), 1-10. https://doi.org/10.1080/21646821.2018.1428455
3. World Health Organization (WHO). (2023, February 9). Epilepsy. Retrieved December 24, 2023, from https://www.who.int/news-room/fact-sheets/detail/epilepsy
4. Garg, D. (2020). Specific considerations for Epilepsy in India. Current Medical Issues, 18(2), 105. https://doi.org/10.4103/cmi.cmi_6_20
5. Fisher, P. L., & Noble, A. J. (2017). Anxiety and depression in people with epilepsy: The contribution of metacognitive beliefs. Seizure, 50, 153- 159 https://doi.org/10.1016/j.seizure.2017.06.012
6. Nadkarni, S., Arnedo, V., & Devinsky, O. (2007). Psychosis in Epilepsy Patients. Epilepsia, 48(9), 17-19. https://doi.org/10.1111/j.1528-1167.2007.01394.x
7. Elger, C. E., Johnston, S. A., & Hoppe, C. (2017). Diagnosing and treating depression in epilepsy. Seizure, 44, 184-193. https://doi.org/10.1016/j.seizure.2016.10.018
8. Spangenberg, J., & Lalkhen, N. (2006). Children with Epilepsy and their families: Psychosocial issues. South African Family Practice, 48(6), 60-63. https://doi.org/10.1080/20786204.2006.10873411
9. Thompson, P. J., & Upton, D. (1992). The impact of chronic Epilepsy on the family. Seizure, 1(1), 43-48. https://doi.org/10.1016/1059-1311(92)90054-5
10. Gururaj, G., Satishchandra, P., & Amudhan, S. (2015). Epilepsy in India II: Impact, burden, and need for a multisectoral public health response. Annals of Indian Academy of Neurology, 18(4), 369-381. https://doi.org/10.4103/0972-2327.165483
11. Acharya, J., & Acharya, V. (2014). Epilepsy in the elderly: Special considerations and challenges. Annals of Indian Academy of Neurology, 17(5), 18-26. https://doi.org/10.4103/0972-2327.128645
12. Beghi, E., & Giussani, G. (2018). Aging and the epidemiology of epilepsy. Neuroepidemiology, 51(3-4), 216-223. https://doi.org/10.1159/000493484
Comments