Indeed the community we live in can impact how we deal with challenges. This is the disorder that my community surely 95% of them haven’t heard of. We need to talk about it.

PNES, Psychogenic non-epileptic seizures are events that are similar to those of epilepsy but without electrical discharges in the brain. PNES is known as a functional neurological disorder and no, not all people who have PNES are crazy, bewitched, have a spiritual calling, poisoned, demon-possessed or have poor mental health.

Now why would I voice my thoughts on such a disorder that has less study and is not widely known? I am an undiagnosed PNES patient. For six whole years I’ve struggled with PNES and it has been challenging. A journey that had and still has plenty of hurdles.

I was only sixteen when I had my first seizure and all I remember was being bombarded with questions of what was happening to me, and I had no clue. I am a Christian so I initially thought it was the Holy Spirit and ignored it. How wrong I was to think I could ignore because minutes after, I had another seizure. There was a strong feeling of shame and stupidity in me for not knowing my body.

It was horrific for everybody around me since it escalated to more horrendous symptoms. I began fainting, crying out, convulsing, muscle jerking, shaking, stiffening and staring. From that moment it grew to be more serious and since I couldn’t provide an answer on my part, they decided to take me to a traditional healer. It’s common in African cultures that epileptic seizures are associated with spiritual calling or bewitching and I was desperate for answers, lucky or not, he wasn’t home.

I went to a church where they prayed for me and the Pastor said I was possessed by demons. Then I had a decline, my mental health went down the drain and I got depressed. Times I felt I was malingering and tried my best to stop but they kept going on and the struggle of finding the cause or cure persisted.

Another family member decided to take me to a prophetess and the conclusion was that “it’s epilepsy but not epilepsy” and that it was happening because of “a dead mother who was unhappy.”. Despite my religion, I participated in the muti she gave me to ward off any evil spirits. It never worked and the NES kept on feasting on my body and mental health.

Wherever I went people had their opinions of what was “wrong.” with me. Sadly every thought I entertained in hopes that I could find a cure for this demonic possession, dead spirit and spiritual calling; whatever it was. Surprisingly not once has there been an ambulance called and it says a lot about the lack of knowledge concerning neurological disorders in our communities.
PNES is there in our communities and often we see it misdiagnosed. I’m positive there are more people who don’t know what could be wrong with them or fear being labelled as maniacs. PNES could be caused by tics, migraine, narcolepsy and many conditions but it also could have no stressor. There is treatment for NES; cognitive behavioral therapy, psychotherapy and anxiety and depression medication have been proven to help.

PNES in South Africa is misunderstood even by neurologists too. Even with the lack of study and limited resources, there is little known but the little had helped many people after diagnosed with the right disorder.

PNES is curable and you can live your life normally with the right treatment. I have been free of seizures for eight months and what helped? Simply having an idea of what was “wrong” with me.
Let our communities know about PNES. We can be the light in our neighborhoods and teach them about this sacred disorder.

This piece was written as part of the Fundza Fellowship programme.