Introduction

Epilepsy, a neurological disorder affecting approximately 70 million individuals worldwide, is characterized by seizures resulting from abnormal electrical discharges in the brain [1]. Regrettably, epilepsy is not solely recognized as a “medical condition” but is often burdened with prejudice, misconceptions, and a lack of understanding, transforming it into a “social label” [2]. Seizures, which are unpredictable, uncontrollable, and often visually unappealing, contribute significantly to the discrimination faced by individuals with epilepsy. Throughout history, epilepsy has been met with fear, associated with mystical interpretations, and subjected to discrimination due to these seizures. Persistent beliefs that attribute epilepsy to being struck by the devil, possession by evil spirits, or divine wrath have endured for centuries [3]. Despite advances in understanding the pathophysiology of epilepsy and its identification as a neurological condition, dispelling false beliefs and biases has proven to be a more complex task. Even with substantial progress in medical treatment and seizure control, reports of bias and prejudice against epilepsy persist [4]. Notably, these prejudices and misconceptions are prevalent even in the most developed societies [5]. Such observations underscore how epilepsy is predominantly regarded in terms of its psychosocial dimensions rather than just its medical aspects. In essence, psychosocial challenges amplify the burden experienced by patients, alongside the medical problems they face [6]. Patient-related sociodemographic and clinical factors, coupled with incorrect handling during seizures, lack of accurate information, and perpetuated societal misconceptions, contribute to a sense of stigmatization and subsequent social isolation among individuals with epilepsy [7]. This indicates that “stigma” lies at the heart of the psychosocial difficulties encountered by patients.

Epilepsy and stigma

Stigma, initially characterized by Goffman [8] (1963) as an “undesirable difference, a mark of shame and disrepute, a blemish that distorts one’s social identity” can be classified into two forms: imposed stigma and felt stigma. Stigma manifests through discrimination, exclusion, and the imposition of a sense of being different by society. Felt stigma refers to an individual’s subjective experience of perceiving themselves as different due to their illness and the fear of potential social exclusion, even in the absence of direct discrimination [9]. Stigma plays a pivotal role in isolating individuals with epilepsy from society. This isolation exacerbates challenges in self-management and adaptation to the condition [10]. Moreover, stigma contributes to the development of psychiatric comorbidities, such as anxiety and depression, and has a detrimental impact on the overall quality of life. Numerous studies indicate anxiety rates among epilepsy patients ranging from 31% to 56% [11], while depression rates range from 27% to 34%, with stigma being identified as a root cause of these psychological issues [12].

The severity of stigma experienced by epilepsy patients can be attributed to two factors: patient-related and societal factors. Social factors primarily contribute to “enacted stigma” whereas patient factors are associated with “felt stigma” [4]. Stigma among epilepsy patients is intensified by the limited knowledge, misconceptions, prejudices, and negative attitudes prevalent in society. Particularly in underdeveloped and developing countries, patients endure formal or informal discrimination, which can be classified as imposed stigma [4]. Considering that approximately 80% of epilepsy patients live in these countries, the seriousness of the situation increases even more. In some studies conducted in the last decade, it has been observed that the belief that “Epilepsy is a mental illness, a mental health problem, caused by supernatural power, an infectious disease, occurs as a result of demon possession, and occurs as a result of the wrath of God” has been reported at very high rates (Table 1) [13–24]. There has been no serious positive development in knowledge and beliefs about epilepsy over time [25, 26]. Regrettably, individuals with epilepsy often face negative attitudes and discrimination from others. These negative attitudes are reflected in the reluctance to marry epilepsy patients, unwillingness to employ them, aversion to being in the same vicinity as them, and even discouragement of their children from playing with children who have epilepsy (Table 1). This direct discrimination imposed on individuals with epilepsy can be described as stigma. It is noteworthy that these societal attitudes align with the experiences shared by epilepsy patients themselves. Patients often report encountering various difficulties related to their condition in areas such as marriage, education, employment, and social interactions [27–29].

It would be incorrect to associate misconceptions and negative attitudes towards epilepsy solely with underdeveloped countries. Even in studies conducted in developed countries, it has been documented that inadequate knowledge and misconceptions surrounding epilepsy persist [53]. Addressing epilepsy-related stigma and reducing its social impact was identified as a priority area during the 2013 European Forum on Epilepsy Research. A subsequent publication arising from this meeting highlighted the importance of efforts to alleviate stigma and its burden on society [54]. Thus, while the extent of stigma towards epilepsy patients may vary across countries with different levels of development, it can be concluded that no country has reported a complete absence of stigma. This notion is further supported by a recent systematic review study which found that all 358 included studies have reported instances of stigma [4]. The prevalence of stigma among epilepsy patients and its effects are summarized in Table 2.

While patients may not face direct discrimination, they can still internalize feelings of stigma, perceiving themselves as different and potentially at risk of exclusion. This phenomenon is commonly referred to as “felt stigma”. Felt stigma can often be influenced by various sociodemographic and clinical factors. These include the patient’s educational level, income level, age at disease onset, seizure frequency, disease duration, and the level of social support they receive [4]. Patients with lower levels of education may have limited knowledge about their condition, leading to the development of negative attitudes towards their own epilepsy. In a modeling study conducted by Yeni et al. [57] (2018), it was observed that knowledge level directly impacted attitudes, and these attitudes, in turn, affected the level of stigma experienced by epilepsy patients. Consequently, it can be inferred that the education level of the wider society influences the stigma imposed on individuals with epilepsy, while the educational level of the patient can impact the degree to which they personally experience stigma.

PwE face significant challenges, particularly in low-income countries. The main issues encountered include difficulty in accessing treatment, inadequate availability of antiepileptic drugs, limited access to specialized healthcare providers such as neurologists, and the presence of societal stigma stemming from negative attitudes towards epilepsy [58]. These collective challenges are often referred to as the “treatment gap” within the literature. Adversely impacting patients both medically and psychosocially, the treatment gap compounds the effects of the disease. As the frequency of seizures increases, the psychosocial consequences intensify, further amplifying the stigma experienced by individuals with epilepsy [59]. Consequently, it becomes apparent that income level can play a direct or indirect role in shaping the level of stigma encountered by patients.

The presence of stigma is observed to be higher among patients with frequent seizures [56]. Increased seizure frequency not only intensifies the level of stigma but also has a negative impact on the individual’s health locus of control. Health locus of control can be categorized as internal and external. Research has shown that individuals with a predominant external locus of control tend to attribute their circumstances to luck and fate, perceiving themselves as having little influence over disease management and exhibiting poorer coping strategies [60]. It has been reported that epilepsy patients experiencing frequent seizures exhibit a more dominant external locus of control, are more prone to depression, and have a lower quality of life [61]. Although this suggests a potential association between stigma and locus of control, it is acknowledged that the available studies on this relationship are limited, necessitating further investigation [61–63].

The age at which epilepsy is diagnosed is another factor that is related to stigma. Research indicates a negative correlation between the age at diagnosis and the level of stigma experienced by patients [64–66]. As the age at diagnosis decreases, patients are more likely to be exposed to the effects of the disease, leading to an increase in the overall burden of the condition [4]. Factors such as seizures and the need for multiple medications contribute to the medical burden, while the impact on school, marriage, and work life adds to the social burden. The compounded medical and social burden exacerbates the level of stigma experienced by patients and can also lead to the development of psychiatric comorbidities.

Research suggests that the language used to refer to individuals with epilepsy can have an impact on the level of stigma they experience, in addition to sociodemographic and clinical factors. It has been reported that using the term “patients with epilepsy” instead of “epileptic patients” can help prevent labeling of individuals, foster a more positive societal attitude, and reduce the stigma associated with the condition [67–70]. This highlights the potential for patients to face various forms of formal or informal discrimination, including verbal and behavioral discrimination. Therefore, efforts should be made to raise awareness among both patients and society, improve knowledge around epilepsy, and foster positive attitudes.

Indeed, there exists a reciprocal relationship between stigma and psychosocial problems in individuals with epilepsy, forming a vicious circle. As the level of stigma increases, so does the likelihood of experiencing psychosocial challenges. Conversely, individuals who face difficulties in their social lives or encounter heightened depressive moods due to epilepsy may also experience an increase in stigmatization. To break free from this cycle, it is crucial to address and mitigate the stigma, its contributing factors, and the psychosocial problems it gives rise to in epilepsy patients.

Epilepsy and psychosocial problems

It would be inaccurate to claim that individuals with epilepsy have equal opportunities in social life. Epilepsy can have negative effects on various aspects of life such as employment, marriage, and academic pursuits. Even individuals who are seizure-free may face discrimination based solely on their diagnosis. The detrimental impact on social life can significantly impact the psychological well-being of patients. Psychosocial problems are more prevalent, particularly in underdeveloped and developing countries, and stigma is considered to be a significant contributing factor [36, 71, 72].

The work life of individuals who are discriminated against due to their epilepsy is one of the most affected social areas. Unfortunately, individuals with an epilepsy diagnosis often encounter challenges such as job rejections or dismissals [15, 22, 41]. As a result, the unemployment rate among individuals with epilepsy is significantly higher compared to that of healthy individuals. To avoid unemployment, many patients feel compelled to conceal their condition, which in turn leads to increased feelings of shame, guilt, and a higher likelihood of experiencing depressive moods [73].

Private life, as well as business life, is profoundly affected by epilepsy [29]. Numerous studies have revealed that individuals in society may not wish to marry those with epilepsy, and may even forbid their children from marrying someone with the condition (Table 1). This demonstrates a clear example of imposed stigma. Unfortunately, this negative attitude extends to education as well. The biases held by individuals in society, particularly teachers, have a significant detrimental impact on individuals with epilepsy. Negative beliefs, such as the misconception that people with epilepsy have low intelligence, pose a danger to other students, or should be educated separately, are still prevalent [14, 30, 31, 35, 48, 51]. It has been reported that individuals with epilepsy have a higher rate of dropping out of school or a lower rate of continuing to higher education, compared to their healthy peers or siblings [74, 75]. The psychosocial burden of the fear of exclusion and stigmatization by peers and educators compounds the medical burden of seizures, significantly impacting the educational lives of patients.

The challenges faced by individuals with epilepsy due to their diagnosis often lead to feelings of isolation and loneliness, which, in turn, increase the risk of psychiatric comorbidities such as anxiety and depression. In severe cases, individuals with stronger depressive moods may even attempt suicide if they lack sufficient coping mechanisms and social support. It has been reported that the risk of suicide among individuals with epilepsy is three times higher than in healthy individuals, with psychiatric comorbidity serving as an underlying cause [76]. The inclination towards suicide is particularly high among young adults who lack social support and face multiple psychosocial challenges. Therefore, precautions should be taken to address this issue [77]. Despite this, there is a significant lack of interventional studies aimed at reducing stigma in individuals with epilepsy or increasing public knowledge about the condition [36]. As a result, there is a pressing need for studies not only focused on measuring knowledge and attitudes but also on cultivating positive attitudes and reducing stigma. The lack of significant changes in societal knowledge and attitudes over time underscores the urgency of the situation.

Conclusions

Despite significant advances in the medical field over past centuries, stigma towards individuals with epilepsy remains prevalent. The stigma is rooted in insufficient knowledge, false beliefs, and negative attitudes held by individuals in society. It can be observed that sociodemographic and clinical characteristics of patients play a significant role in shaping the perceived stigma they face. Regardless of its form, stigma has a strong correlation with the psychosocial challenges experienced by patients. Despite numerous studies examining the issues faced by individuals with epilepsy, efforts to reduce or prevent stigma appear to be inadequate. Therefore, it is strongly recommended that future studies prioritize increasing awareness and knowledge within society, as well as focusing on strategies to reduce the stigma experienced by individuals with epilepsy.