Open social media discussions are desmystifying South Africans’ misguided perception of epilepsy. Through TikTok videos, Instagram reels, WhatsApp groups and honest online conversations, South Africans are dismantling the fear and stigma associated with the neurological condition.
Short-form video platforms, in particular, are playing a powerful role in destigmatisation.
A 30-second clip showing someone safely riding out a seizure, or explaining how they live a full, independent life with epilepsy, can undo years of misinformation in a way that formal campaigns often can’t.
Misunderstood
“Epilepsy is one of the most common neurological conditions in the world, yet it remains one of the most misunderstood,” says Lance Blumeris from Unu Health, a telemedicine platform.
“In South Africa, many people living with epilepsy still report discrimination at school, in the workplace and even within families.”
Misinformation — such as the belief that epilepsy is contagious, linked to mental illness, or something to be “hidden” — continues to cause harm.
And while access to healthcare remains a challenge for many, social stigma often adds a second, quieter burden.
Digital platforms are helping to chip away at this by doing something powerful: making epilepsy visible.
Understanding
Epilepsy is a neurological condition that affects the brain and causes recurring seizures.
These seizures vary widely — some involve convulsions, while others may look like brief staring spells, confusion or loss of awareness.
“Not all seizures look dramatic. Not all epilepsy is the same.
“And crucially, many people with epilepsy live full, active lives when the condition is properly managed,” explains Blumeris.
Understanding this is key — and it’s exactly the kind of information now being shared peer-to-peer online.
One of the most valuable roles of social media is practical education.
These simple steps, widely shared online, are helping ordinary South Africans feel more confident and less afraid.
This digital openness is slowly translating into real-world impact — safer schools, more supportive workplaces, and communities that respond with knowledge instead of panic.
As digital health tools, online education and community-led storytelling continue to grow, South Africa has an opportunity to move beyond awareness into everyday understanding.
