Any individual, regardless of age can develop epilepsy. Approximately 50 million people are living with epilepsy throughout the globe out of which 10 million people with epilepsy are living in India.
Presently, there are numerous studies confirming a significant link between epilepsy and psychological disorders such as depression, anxiety and sometimes psychosis. Other mental health issues such as personality change in terms of thoughts and behaviour, suicidal behaviour, irritability, mood swings and aggression are associated with epilepsy condition. Interestingly, these mental health issues are underdiagnosed and undertreated which further deteriorates seizure control and hence increases the severity of epilepsy.
People with epilepsy (PWE) develop anxiousness, nervousness and restlessness due to the fear of experiencing episodes of seizure anywhere and anytime, consequently intensifying their anxiety levels. Once an individual has been diagnosed as epileptic, he/she starts to feel guilty, confused and dissatisfied and finds no hope for recovery. Additionally, he/she questions one’s existence and meaning of life. The thought process revolves around questions and statements such as “Why me?”, “Why do I have to suffer?”, “What is the point of living with epilepsy condition?”, “Nobody can help me”, “I am cursed”, “It’s a punishment from god”, and also blame the family members for their neurological condition, all of which results in shame, despair, anger, irritability in the individual and further increases the risk of committing suicide.
Education, employment, marriage and social well-being are some of the psychosocial factors which bring definite amount of mental distress for PWE.
In an educational environment, a child with epilepsy will show unwillingness to go to school or college due to the concerns about the possibility of having another seizure episode within the institutional premises and may fear the response from other students or teachers which ultimately results in lower self-esteem and social isolation.
Psychological factors such as stress, anxiety and depression also have an influence on the families of PWE. Mental distress is experienced by parents also once they recognize their child is diagnosed with epilepsy apart from the child. With further increase in parent’s anxiety levels or overwhelming fears, parenting style changes to over-protectiveness and hence nurturing a dependent child. But, when the child turns to young adult, problematic dependent behaviour is observed by the parents and they complain about not executing independency, which on a longer time results in deterrent Parent-Child relationship.
PWE have struggles for getting employed. One of the main reasons was found to be employer’s attitude, though Indian Constitution has provisions for PWE for attaining a job opportunity without rejecting on the basis of epilepsy. Getting a suitable life partner is difficult and worrisome, but the Marriage Laws (Amendment) Act (No. 39 of 1999) with effect from December 1999, highlights that PWE have all the legal rights to get married.
In elderly population, the incidence of epilepsy is high. Poor quality of life worsens the neuropsychological health, cognitive impairment, social isolation and poor self-esteem. Substance dependence is also found in older age apart from young adulthood, which further deteriorates epileptic condition of the individual.
Considering the society’s belief on epilepsy, it is assumed to be contagious nevertheless it is very much evident that epilepsy is a non-communicable disease. Socialization becomes a struggle for a PWE due to prevailing discrimination which leads to impaired social skills, low self-esteem, lack of interest in pleasurable activities and thus entirely retreating from the social world.
Additionally, some cultures consider that it’s a spirit possession within the individual and refrain from required holistic medical treatment, making the condition worse.
To conclude, there is a profound need to educate the society on stigma and prejudice associated with epilepsy through various awareness programs. Prerequisite screening and addressing psychological concerns immediately after the diagnosis of epilepsy should be implemented in the hospitals or clinics by medical professionals for compelling treatment outcomes. Furthermore, a holistic treatment approach, recognizing biological, psychological and social elements would minimize the treatment gaps and improve the individual’s quality of life.