For most health conditions, conversations may be difficult, but they’re at least possible. Epilepsy is different. It sits in the shadows—wrapped in stigma, silence, and misunderstanding. Over the years, I’ve seen how this silence isolates people and allows harmful myths to thrive. But why has epilepsy become such a taboo subject?
The answer begins with the way seizures appear to those who witness them. A seizure can be sudden, intense, and frightening to someone who doesn’t understand what’s happening. The physical manifestations—falling, jerking movements, strange sounds, blank stares—can look “weird” or even “scary” to unprepared eyes. In many communities, such moments are often misinterpreted as signs of spiritual attack, possession, curses, or mental illness. This misunderstanding has deep cultural roots and has been passed down for generations.
Because of this, Persons With Epilepsy often face two kinds of isolation. First, there is social isolation: friends, classmates, co-workers, and even family members may distance themselves, sometimes out of fear, sometimes out of ignorance. The lack of clear information and support structures makes it easier for people to avoid than to understand.
Then comes self-isolation. Many PWEs, know exactly how people might react if they found out about the condition. We fear being treated differently, being excluded, or being pitied. So we hide the condition. We keep quiet, we avoid disclosure, and we try to navigate life under a cloak of secrecy. We keep it to ourselves. Over time, this silence feeds back into public ignorance. The less people know, the more myths spread, and the harder it becomes for others to speak out. It’s a vicious cycle—and this is exactly how epilepsy becomes a taboo subject.
At Seizure Support, we have made it our mission to help break this cycle. We promote dialogue, treatment, accurate information, and human connection. We go into communities to challenge misinformation and replace it with understanding. We create safe spaces—through our Patient Portal, Global Epilepsy Forum, and sensitization work—where people can share their experiences openly without shame. Because once something is brought out of the shadows, it becomes easier to deal with.
Talking about epilepsy openly is not just about raising awareness; it’s about restoring dignity, building support networks, and ensuring no one faces this journey alone.
This issue is discussed in detail in the Epilepsy Management Guide, which you can download for free. To participate in the discussion on this topic, visit the Global Epilepsy Forum. To know more about what we do, please click HERE. We also have a donation page where those who feel compelled can give whatever they can afford by clicking HERE.
