Having epilepsy is a constant battle: not only is it a chronic life condition which can be fatal, it’s an invisible disability. 1 in 100 people in the UK have epilepsy and approximately 50 million people worldwide have it, yet it feels incredibly lonely.
I know that, because I have epilepsy.
I was diagnosed in 2014 and although the World Health Organisation says that epilepsy is one of the most common neurological illnesses globally, it is also one of the most stigmatised. Especially when you are a black woman.
Many people within the black community see the symptoms – loss of consciousness and muscle jerks – and turn to religion, culture and spirituality instead of medicine, because medicine often fails spectacularly when it comes to this condition. I fell out with my own mother because she was convinced that I just wasn’t praying enough and my love of horror films had opened the door to demonic possession. She believed that this was the cause of my affliction and we stopped speaking for years. After I was diagnosed and began taking medication, my sister accused me of faking my seizures for attention. She believed the common misconception that once you begin medication the seizures will immediately cease, but this is rarely the case.