Although epilepsy is one of the most common neurological conditions worldwide, it’s still misunderstood by many. In South Africa, over 500 000 people are epileptic, but misinformation and stigma affect the way they’re treated and the care they receive. When communities don’t have the right information, people with epilepsy often face discrimination, isolation and barriers to leading their fullest lives. So, ahead of International Epilepsy Day, here are six myths – and facts – about the condition.
Myth 1: Epilepsy is rare
Epilepsy is actually fairly common, affecting around 50 million people worldwide and 1 in 100 people in South Africa across all age groups, socioeconomic backgrounds and communities. Despite its prevalence, epilepsy often remains hidden due to stigma and fear of discrimination. This means that many people manage their condition privately and don’t speak about it openly, which continues the mistaken belief that it is an unusual or rare condition. This lack of awareness reinforces stigma, and the stigma reinforces silence.
Myth 2: All seizures involve convulsions
Not all epileptic seizures look the same. While some involve dramatic muscle contractions and loss of consciousness, others can be brief staring spells lasting only seconds, subtle confusion, repetitive movements like lip-smacking, or even just a sudden sense of déjà vu.
This variety can lead to a misunderstanding of what’s actually happening and can potentially delay a diagnosis. For example, a child who stares blankly during class may be dismissed as daydreaming rather than as experiencing absence seizures, while someone experiencing brief episodes of confusion might think these are due to stress or fatigue. Without knowing that seizures can be subtle, people may go months or years without proper diagnosis and treatment. Unfortunately, during this time, their condition may worsen.
Myth 3: Epilepsy is a mental illness
Although living with epilepsy can affect a person’s emotional well-being, the condition is not a mental health problem – it’s a neurological disorder. A seizure happens when there is a sudden, uncontrolled surge in the brain’s normal electrical activity, almost like an electrical short circuit.
This distinction matters in terms of how people with epilepsy are perceived and treated. When epilepsy is conflated with mental illness, it often carries additional layers of misunderstanding and prejudice. While psychological support can help people with epilepsy deal with the emotional strain of living with the condition, they need proper neurological care and treatment. Understanding epilepsy as a physical brain condition helps combat stigma and ensures people receive appropriate medical care.
Myth 4: You should restrain someone during a seizure
Restraining a person during a seizure can actually cause injury to both the person seizing and the person helping them. Instead, stay calm, clear the area of hard or sharp objects, cushion the person’s head with a blanket or piece of clothing, and gently turn the person onto their side once the active seizure ends. This position helps keep the airway clear. Most seizures end naturally within one to two minutes, so time it if you can. You should get emergency medical help if it lasts longer than five minutes, if another seizure follows immediately, if the person is injured, pregnant, or if it is their first known seizure.
Myth 5: Epilepsy can’t be treated
While epilepsy may not always be curable, it’s typically completely manageable with medication and regular medical care. With the proper support, many people go long periods without seizure episodes. Fortunately, anti-epileptic medications work for the majority of people with epilepsy, allowing them to live mostly seizure-free.
There are several risk factors to developing epilepsy, including a genetic predisposition, previous brain injuries and certain bodily infections. If you feel you or someone you know is at risk of it, having adequate medical aid cover means you’re financially covered should you be diagnosed and need treatment. For example, being a member of a medical aid such as Fedhealth means you get comprehensive cover, including hospitalisation, specialist consultations, diagnostic testing, and follow-up care, so you can manage the condition without the financial strain.
Myth 6: People with epilepsy can’t work or live independently
With the right treatment and support, people with epilepsy can work, study, have a family and live independently. While some cases of severe and uncontrolled epilepsy may need additional support, many people are able to live normal lives because they have complete seizure control as a result of the right treatment and medication.
South African labour law also protects people with epilepsy from unfair discrimination: they can’t dismiss or refuse to employ someone because they’re epileptic, and employers are required to make reasonable accommodations in the workplace, such as flexibility around medical appointments or awareness training for colleagues. This constitutional protection means people with epilepsy can still thrive professionally despite their condition.
International Epilepsy Day is a reminder that education is one of the most powerful tools in reducing the stigma of epilepsy. By understanding the condition, we can provide better care and create communities with more supportive environments for those affected. This means people with epilepsy can better access the care they need, live without discrimination and get the respect and understanding from others that they deserve.
