trapped by epilepsy: a patient's personal account

'Is it my fault that I have epilepsy?'

My eyes are wide open. My body aches, my head feels heavy as if there was this big rock being thrown at me.

I gently run my fingers over my lips and feel the sticky, crusted blood, which has probably dried up overnight.

Ouch! I have bitten my tongue again. I am lucky that I have not wet the bed this time. My elbow still hurts, and there is a big purple bruise over my skin.

This is probably the hundredth time I am covered with bruises. I have lost count of the number of sick leaves I have had to take from work this year.

My doctor told me that I have epilepsy, a medical term that I am slowly trying to learn to live with.

My parents think that I am being possessed by evil spirits. My friends think I have too much toxins in my body, and my work colleagues either think I have an incurable contagious disease or I am probably just shirking my duties.

My boss, on the other hand, has no other choice but to believe what the doctor says.

My husband is as clueless as me, and my two kids are just too young to understand.

Nevertheless, the sight of me suddenly falling to the ground with stiff arms and legs, clawed hands, eyes rolled up with frothy drool, teeth clenched, followed by violent jerks is understandably unpleasant to anyone.

I no longer know who to believe; my doctor, or the “bomoh” my mum took me to see.

Out of desperation, I have tried everything, including taking pills, drinking special water that was given to me by a holy man, and sipping thick, bitter medicinal antidotes that supposedly will cleanse my mind and soul from evil spirits and toxins.

I have been prohibited from driving because of my unpredictable attacks. I do not often get the usual “warning signs” or “aura” before my attacks.

I do not know when I will fall and injure myself. I am scared, depressed and cannot find the will to face yet another day of unpredictable torment.

I cannot help but feel embarrassed when seen at my worst state in public places, especially in front of my two kids.

I feel that my work colleagues are avoiding me and I might eventually lose my job. What if my friends start to distance themselves? Is it my fault that I have epilepsy?

Are the people around me simply ignorant about my illness, and as a result, I am now the victim of isolation and discrimination?