What’s Wrong With How We See Epilepsy?

Outdated beliefs still affect epilepsy care and awareness.

Key points

• Epilepsy affects 50 million people worldwide, yet myths and stigma persist, limiting understanding.
• Purple Day, March 26, is a global opportunity to challenge epilepsy myths and spread accurate information.
• Public education and policy reform are crucial for reducing epilepsy stigma and promoting fair treatment.

Purple Day, observed annually on March 26, raises epilepsy awareness and dispels myths. Despite affecting 50 million people worldwide (WHO, 2022), epilepsy remains misunderstood, leading to stigma and treatment barriers. This article explores persistent myths and media-driven misconceptions.

Myth 1: Epilepsy Is Rare

Epilepsy is one of the most common neurological disorders, affecting 1 in 100 people (Epilepsy Action UK, 2023). In the United States, 3.4 million people live with epilepsy (Epilepsy Foundation of America, 2023). Many cases go undiagnosed, reinforcing misconceptions about its prevalence.

Myth 2: Epilepsy Always Involves Convulsions

While generalized seizures cause convulsions, epilepsy includes other types like absence seizures (brief awareness lapses), atonic seizures (muscle weakness), and focal seizures (sensory disturbances; Epilepsy Society, 2023). Many seizures are subtle and go unnoticed.

Myth 3: Epilepsy Has Supernatural Causes

In some cultures, epilepsy is still linked to demonic possession or witchcraft. Historically, this misconception led to fear and isolation (Temkin, 1994). Even today, stigma prevents medical care, with some relying on harmful traditional practices (Epilepsy Action UK, 2023).

Myth 4: Epilepsy Affects Intelligence

Epilepsy itself doesn’t cause cognitive impairment (Camfield & Camfield, 2015). Many successful individuals, including Sir Isaac Newton and Vincent van Gogh, had epilepsy (Hughes, 2005), proving that intelligence is not affected.

Myth 5: Restraining Seizures Is Necessary

Restraining someone during a seizure or placing objects in their mouth can cause injury. Instead, bystanders should ensure safety by clearing sharp objects, positioning the person on their side, and allowing the seizure to pass (Epilepsy Foundation of America, 2023).

Myth 6: People With Epilepsy Can Never Drive

Driving regulations for people with epilepsy vary significantly across the world, but the belief that individuals with epilepsy can never drive is not entirely accurate. In countries like the United Kingdom and the United States, people with epilepsy can obtain a driver’s license if they have been seizure-free for a certain period, typically one to two years, depending on their specific condition and local regulations (Epilepsy Society, 2023). However, in countries such as India and China, the laws are far stricter—anyone who has ever had a seizure, regardless of seizure control, is permanently banned from obtaining a driver’s license (Gupta, 2017). These rigid policies limit independence for people with well-managed epilepsy. Advocacy groups like Epilepsy Action UK and the Epilepsy Foundation of America continue to push for fairer, evidence-based regulations.

The Role of Media in Shaping Public Perceptions of Epilepsy

Media plays a significant role in shaping public perceptions of epilepsy, yet portrayals often reinforce harmful stereotypes instead of providing accurate information. Films frequently exaggerate seizures for dramatic effect, depicting uncontrollable convulsions or unrealistic medical interventions, which mislead audiences about the true nature of epilepsy (Duncan, 2022). Additionally, the misconception that all individuals with epilepsy are photosensitive persists, despite only about 3 percent of cases involving photosensitivity (Fisher et al., 2005). Fictional characters with epilepsy have historically been portrayed as unstable, dangerous, or even possessed, further perpetuating stigma and negatively impacting employment opportunities and self-esteem (Schachter, 2021; Epilepsy Society, 2023). To challenge these misconceptions, it is crucial to foster awareness through education, advocacy, and responsible media representation. However, epilepsy awareness efforts often lack representation from diverse ethnic backgrounds, making inclusion essential for a more equitable approach to advocacy and public understanding.

The Role of Epilepsy Organizations

Organizations such as Epilepsy Action UK, Epilepsy Society, and the Epilepsy Foundation of America play a crucial role in providing resources and advocating for better healthcare policies. Their initiatives help individuals with epilepsy challenge societal stigma. However, greater efforts are needed to amplify voices from minority communities, who often face additional barriers such as cultural stigma and healthcare inequities.

Elevating Personal Narratives From Diverse Communities

Personal stories are powerful tools for challenging stereotypes. Yet, epilepsy narratives predominantly reflect Western perspectives, leaving gaps in representation for people from minority backgrounds. Platforms are needed to share diverse experiences, highlighting how cultural beliefs and socioeconomic factors shape epilepsy journeys.

Advocacy, Policy Change, and Minority Inclusion

Legal protections, improved healthcare access, and antidiscrimination policies are crucial advocacy goals. These efforts must also address the unique struggles faced by minority groups, including cultural stigma and financial constraints. Increased funding for research on epilepsy in diverse populations and targeted awareness campaigns can help bridge these gaps.Epilepsy remains one of the most misunderstood neurological conditions, often misrepresented and marginalized. To create a future where epilepsy awareness is inclusive, diverse voices must be heard, and stigma actively dismantled. True progress can only be achieved when advocacy efforts reflect the realities of all people affected by epilepsy. Source: psychologytoday.com, Ankita Guchalt