The history of epilepsy can be summarised as 4000 years of ignorance, superstition and stigma, followed by 100 years of knowledge, superstition and stigma.
Stigma and exclusion are common features of epilepsy in both the developed and developing countries and a major contributor to the burden associated with the condition. Reducing the stigma of epilepsy is key to reducing its impact and so improving quality of life. The social consequences of having epilepsy can be enormous, be it that they vary from country to country, based on cultural differences and economic circumstances. The most significant problems people with epilepsy encounter in daily life often are not related to the severity of the condition, but stem from concepts of epilepsy held by the general public.
The belief that epilepsy is a curse from God is ancient and it is based on fear and a lack of knowledge. With the medical expertise we have today, and the scientifical explorations, there should be no need for anyone to fear this condition. When a person, who suffers from epilepsy, is having an attack it can appear frightening and strange. If you feel this way when you are the spectator, then imagine how it must feel for the one who has these attacks – often on a regular basis. The attacks appear suddenly and are often of short duration, from some seconds until some minutes. They can appear differently with different people, but for one and the same the attacks are often of the same nature.
Some attacks will only give symptoms in limited body parts, others can affect your hearing or eyesight. It can even be hard to understand that it is an epilepsy attack. How the attacks appear is depending on which part of the brain is affected. Epilepsy is parted in two main types:
Generalised attacks where most parts of the brain are affected.
Focal attacks where the attack is beginning in a limitary part of the brain.
It is mostly at the generalised attacks when you get spasms. You lose your consciousness without warning and your whole body is tense. After 10-30 seconds your arms and legs begin to twitch. The attack is over in 1-2 minutes.
Another variant of the generalised attacks is giving short and fast muscle twitching without the person is losing consciousness.
You can also become distant for some seconds and look in front of you without seeing anything.
All this is scary and if you know nothing about, as the one who is suffering from it or as a spectator, it can be easy to believe that the epilepsy attack is caused by some evil spirits or a curse from God.
We need to educate ourselves and learn to understand what is causing epilepsy, that is the only way to help those who are suffering from the condition.
Focal attacks affect a limitary part of the brain, sometimes the attacks are not even visible for a spectator. The one who is affected can for example experience blinking lights or an orb of light. No matter the kind of attack, they appear unconsciously for the one who is affected by them and they don’t remember them afterwards.
People with the milder form of epilepsy are mostly not harmed by the attacks. The case is different for those who suffer from the more severe variant of epilepsy. If they fall it can lead to damage on teeth, concussions, broken bones in the body and the list can go on forever.
So why do people still believe that the one who suffers from epilepsy is cursed by God or is struck by some evil spirit? There can be as many answers for that as there are individuals asked about it, but we don’t have that much time. As I began this article; people have been debating this for 4000 years, so have we come any further? That also depends on who you are asking, and the level of knowledge of that person, but I am interested in the historical aspect of this issue.
Let me give you a quote:
“Around fifty million people suffer from epilepsy. Many of them suffer silently. Many of them suffer alone. Beyond the suffering and beyond the absence of care lie the frontiers of stigma, shame, exclusion and, more often than we care to know, death”.
Dr. Gro Harlem Brundtland, Director General WHO, 1998–2003, on the occasion of the WHO Global Campaign Against Epilepsy in 2001.
Reducing the stigma of epilepsy is key to reducing its impact and so improving quality of life. Epilepsy is a universal condition and knows no racial, national or geographical boundaries. The social consequences of having epilepsy can be enormous, be it that they vary from country to country, based on cultural differences and economic circumstances. Through the centuries, many misconceptions about the condition were delivered, based on the culture of a particular era or in a particular part of the world. These concepts and prevailing prejudice may lead to rejection, denial of education and isolation – especially but not solely – in the developing world. Attitudes towards people with epilepsy are influenced, in part, by the extent of knowledge about the condition.
The concept of epilepsy has varied profoundly during the past 2–3000 years. Epilepsy has been considered sacred as well as diabolical. People with epilepsy have been looked upon as “being chosen” or as “being possessed” depending on the popular belief of that moment or place, and with clear consequences for the treatment of and attitudes towards people with epilepsy. It is not difficult to understand why people were mystified by epilepsy, given that its symptoms are sudden and often dramatic.
Epilepsy has been given many names, such as burning disease, drowning disease, shameful disease, or simply “it”. But everywhere in the world it is a hidden disease.
As early as in Mesopotamian civilisation seizures were described and related to “the hand of sin”, the god of the moon. The moon was believed to cause seizures and spasms in the human body. In some cultures epilepsy is called ”the falling sickness” as it is common for someone who is having a severe epilepsy attack to fall on the ground.
Some believed that the moon heated the atmosphere surrounding the earth, consequently melting the brain and so provoking a seizure. In the Christian world, the biblical story of Jesus healing a boy showing symptoms of an epilectic seizure had important consequences and led to the opinion, shared by many Greek and Latin priests, that, “epileptics were demoniacs” and that epilepsy was brought about by an unclean dumb and deaf spirit”.
Let us summarize this flow of information: epilepsy is not caused by sin – either committed by the affected, his/her parents or anyone else. Epilepsy is not caused by some evil spirits who took place in your body, causing you to fall, or drool, or twitch or whatever the signs are of an attack.
Epilepsy is caused by a damage on the brain. That damage could have been caused by a stroke, or several concussions or something else that has been serious enough. The skull feels hard when you knock on it, but it is fragile as an eggshell. Use your brain to educate yourself and your loved ones. Instead of fearing the new, become curious and decide to learn more. This is the only way you and the rest of us can develop. This is the only way we can help our affected brothers and sisters to leave the darkness and come out in the light.