I have Epilepsy, but it is not my social identity.

Epilepsy, a chronic disorder of the brain characterized by repeated seizures, is one of the oldest diseases of mankind. Epilepsy reportedly affects about 50 million people worldwide with the majority (75-85%) of persons affected found in developing countries including Africa. It is a disease that affects all people irrespective of age, sex, race, socioeconomic status etc. The causes of epilepsy are many and include infections of the brain like meningitis, traumatic brain injury (injury to the brain caused by trauma such as road accidents, falls, brain tumors and stroke.

The burden caused by epilepsy on those affected and their guardians or caregivers is significant especially in under-served and underdeveloped parts of the world. Many persons with epilepsy in these areas are often forced to drop out of school at an early stage due to epilepsy related factors such as the occurrence of seizures in the school milieu and progressive decline of intellectual capacity due to brain damage induced by repeated uncontrollable seizures.
However, one of the most serious negative consequences of epilepsy that has been well described and documented is social stigma against people with epilepsy. In fact, the prevalence rate of social stigma against people with epilepsy is higher than that of the condition itself especially in Sub-Saharan Africa where epilepsy is often attributed to witchcraft and curses.

Social stigma against PWE which can be defined as social disapproval of PWE based on the epilepsy that they have which most people consider as a mark of disgrace, dishonor, witchcraft or curse, is the most studied implication of Epilepsy in Sub-Saharan Africa. Social stigma against PWE especially women is a major cause for concern in Sub-Saharan Africa. PWE are often disdained and avoided while others are jeered at particularly in public places.
The seizures or convulsions which characterize epilepsy affect the brains of PWE, but social stigma against PWE does not only affect the brain (psychology) of PWE but also their heart, (feelings) and consequently shapes their behaviors. PWE who are stigmatized usually feel different, devalued, lonely, depressed and rejected by society. All these factors severely affect the social identity of PWE leading to low self-esteem and suicide which are very common among PWE. Stories have been told of how people with epilepsy have been carried to bushes or forests and abandoned there on the basis that they were witches or wizards.
Though social stigma against PWE affects both males and females with epilepsy, it is particularly pronounced against women with epilepsy (WWE). Women with epilepsy are not considered as candidates for marriage by many people especially in Sub-Saharan Africa. Many people will openly object to marrying a PWE or allowing their loved ones to be emotionally involved with any PWE.

Though WWE are deemed “not fit” for marriage by many men, they are often deemed “fit” for sex by some of these men. This is typically exemplified by the fact that many WWE are single parents stemming from the fact that they had been sexually exploited by men who later denied they were responsible for the pregnancy.

My experience with epilepsy in Cameroon

Cameroon has one of the highest prevalence rates of epilepsy in the world. I have always heard that epilepsy was common in Cameroon, but it wasn’t until I worked with PWE in an area of high epilepsy prevalence that I got a better appraisal of the situation. While working with PWE in an area with high epilepsy prevalence in Cameroon, my attention was drawn to the psychological and social impact of epilepsy on PWE especially women who had epilepsy.

One of the villages where I worked had been stigmatized to the point of being nicknamed “epilepsy village”. Some inhabitants around this area openly declared to me that they would never admire or desire any girl from the “epilepsy village” because every girl from that village had epilepsy, which was not the case. Some of the epilepsy patients were living together in tattered houses. I met 3 ladies who all suffered from epilepsy and were living in a dilapidated house. These 3 ladies were not related though; they were brought together by their condition and the fact that nobody wanted to live with them because of their condition. All three ladies were single parents; one had 4 children, the other 2 and the third had 1. The house in which they were living was owned by an old man who was married to one of them and was living with them. I encountered several other WWE who were single parents. I recall a lady who had epilepsy and who was expecting her second child. Her first child who was about 5 years at the time I met her was rejected by the man who impregnated her, who claimed he was not responsible. She had to struggle with the help of well-meaning individuals to raise the child. Now that the child was 5 years old, the same man who denied being responsible for the pregnancy now wants to “seize” the child from her.

Another lady that I met, had two children and was living with her mother under deplorable conditions in a room that had been given to them by a good-will individual. She said the father of her two kids had promised to marry her only to reject her after sleeping with her.

The level of social stigma against PWE is high and something must be done urgently to manage this situation. What I observed while working with PWE was disheartening, but must importantly it was a life changing experience because it fired an intense desire in me to work towards eliminating social stigma against PWE especially WWE by raising public awareness on epilepsy especially social stigma against PWE.

But why so much stigma against people with epilepsy? Why do we feel compassion for people with disorders of the heart, kidney, liver, lungs etc. but feel so little or no compassion for people with epilepsy, which is a disorder of the brain? Why do we treat PWE as if they were not humans?

People with epilepsy are humans not a diagnosis and should therefore be treated as such. Behind the diagnosis of epilepsy are beautiful men and women whose only desire was to live their lives and achieve their fullest potential, is this too much to ask? Epilepsy is a disorder of the brain and not of the heart; PWE have a brain disorder not a heart disorder, they can love and feel loved. We may not have drugs to help PWE, but we have enough love and affection in our heart that they need. Love, compassion and care are the greatest gifts we can ever give to PWE. Our real fight should be against epilepsy and its negative consequences on our friends, siblings, children, spouses and society not against PWE. No one chooses to have epilepsy: epilepsy affects anyone who has a brain and a risk factor. Yes, that woman, girl, man, boy or child has epilepsy, but it is not her/his social identity.

People with epilepsy are humans, not a diagnosis

Dr Mundih Noelar

Dr Mundih Noelar, MD is a young medical professional who has developed a great interest in bettering the lives of people with Epilepsy after her experience on the field. As a member of BodyTalk, she hopes to effect change by advocating for social inclusion.
You can reach her at njohjammundih@yahoo.com

By Dr Mundih Noelar and Dr Ameaka Fatima

One thought on “I have Epilepsy, but it is not my social identity.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s