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Epilepsy patients have to ultimately transcend negative cultural concepts and habits in coping with the difficulties of living with epilepsy.
ACCORDING to a social science encyclopedia, culture is the “artificial, secondary environment” which man superimposes on the natural. It comprises languages, habits, ideas, beliefs, customs, social organisation, inherited artifacts, technical processes and values.
Culture is much more powerful in affecting the lives of epilepsy patients compared to what we have been given by “nature”, or the genes that we inherit, in many ways.
Culture affects the way we think of epilepsy. In many cultures, epilepsy is regarded negatively as a form of demon possession, or reflection of sin committed by ancestors.
For example, in many Asian societies, it is perceived as a form of madness, reflected in the terms used for epilepsy. For example, both the two words used in Chinese for epilepsy, “Dian Xian” mean “madness”. Similarly “gila babi” in Malay.
In Laos, the saliva of epilepsy patients is thought to be able to transmit the disease, so patients are often not encouraged to eat together at the same table with other family members.
It is easy to understand why epilepsy patients who live in these cultures would face discrimination because of the disease.
On the other hand, modern science regards epileptic seizures as a result of inappropriate synchronized discharge of brain cells. Such a concept, or “modern science culture”, is much less likely to result in stigma and discrimination of epilepsy patients.
Culture also affects the way we look at epilepsy patients in a more extended way; their roles and contributions as a member of the community, as colleagues, spouses or parents, and as friends.
From the understanding of modern medical science, unless there is co-existent brain diseases, epilepsy alone generally does not affect a person’s mental ability or behaviour.
On the other hand, in some cultures (for example, Vietnam), family members often think that sufferers are unable to cope with the stress of rigorous work or study, and thus, would inappropriately place limits to their work, study and may even forbid marriage solely because of epilepsy.
Among Vietnamese, it is commonly believed that seizures are triggered by “too much brain work”. Therefore, those with epilepsy... should thus be confined to doing “simple”, “special” or “appropriate” work only; they should be prevented from doing “strenuous” or “tiring” work because that might trigger seizures.
In some of Oriental cultures, family honour is highly valued. Some parents may regard children with epilepsy as a dishonour to the family, and thus would hide their children from the public and prevent them from attending normal schools.
Similarly, some school teachers may think that students with epilepsy may affect the overall academic performance of the class. Hence, they do not want these students to be placed in normal classes.
In some societies, epilepsy patients may be perceived as a threat to public safety. For example, even though a patient may not have a seizure for many years and is thus considered “cured” from epilepsy, society may still have rules that forbid such a person from driving a motor vehicle in the public road.
Life is difficult and never fair. In a way, what epilepsy patients have to face is nothing unusual. We are all unequally endowed with many imperfections; we are not the same in our makeup and resources. Life is full of difficulties, problems, hurdles and challenges.
All of us – whether we suffer from epilepsy or otherwise – have to face misunderstanding, lack of recognition and mistrust; even criticism, objections and opposition. Some of these may be warranted; others may be totally unfair, due to misunderstanding or even conflicts of interest.
How we cope with life’s unfairness, ignorance, mistrust and opposition is influenced by our upbringing, the encouragement and affirmation from our parents and people who are important to us, thus allowing us to build up our “self-image” and confidence.
Ultimately, those living with epilepsy have to make the choice to transcend negative cultural concepts and habits in coping with the difficulties and ups and downs of life.
There is no point wallowing in self-pity or anger. Although it is difficult, let not others’ mistrust determine and undermine the way we look at ourselves.
Despite all the difficulties and challenges, life is rich with possibilities and can be meaningful. Let us make full use of the opportunities and strengthen our skills and abilities.
Keeping in view that nobody is an island, that we all need each other, let us show our families that we can be reasonably independent. Let us strive for a life that is significant, one that can positively contribute to others around us.
Prof Datuk Tan Chong Tin is an Emeritus Professor and Senior Consultant in Neurology at University Malaya Medical Centre
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