Stigma and Silence: Epilepsy in Cameroon
A public health worker reflects on fieldwork with persons with epilepsy in Cameroon, documenting the severe social stigma—particularly against women—that compounds the medical burden of the condition. The piece asks why neurological disorder carries such different moral weight than other chronic illnesses, and calls for compassion over judgment.
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 Persons With Epilepsy (PWE) in an area of high epilepsy prevalence that I got a better appraisal of the situation. 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 PWE 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 most 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 on 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 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. 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 hearts 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.
Dr. Mundih Noelar Njohjam CEO Epilepsy Aid and Awareness Foundation Purple day Ambassador Member of Young African leaders initiative network(YALI)
This piece emerges from a moment of growing global attention to epilepsy as a public health priority in sub-Saharan Africa, where prevalence is high and access to treatment limited. In Cameroon specifically, the writer encountered communities where stigma had become so entrenched that entire villages were named and avoided based on epilepsy prevalence, reflecting deep social anxieties about neurological difference and femininity.
The essay's power lies in its refusal of abstraction. By naming specific women—single mothers abandoned by partners, children rejected or seized, families crowded into deteriorating shelter—the writer makes stigma material and undeniable. It remains urgent because it identifies stigma not as folklore but as active social exclusion with concrete harms, and because it locates the real problem not in the condition itself but in how societies choose to respond to it.