“I have been living with epilepsy for more than 35 years, and have lived my life in the shadow of people around me. But now I refused to isolate myself just because some people don’t approve of my disorder,” Sibiya said.
Sibiya says he does not believe it is his responsibility to educate people about his disorder and believes that people should be educated about epilepsy and have a basic understanding of the condition.
Growing up with epilepsy in a community that had access to very little information about health issues and was extremely influenced by cultural beliefs wasn’t easy for Sibiya. He and his family struggled to fit in with the community and because of the constant discrimination and stigmatisation, the Sibiya family took to keeping him locked up. He developed epilepsy as a boy but was only diagnosed with the condition 21 years ago at the age of 26.
Myths and misconceptions
According to Sibiya, before he was diagnosed with epilepsy people believed his disorder was caused by a curse and people didn’t want to socialise with him or his family.
“Because of the myths and misconceptions, I didn’t get an opportunity to go to school. I had to just watch as my siblings went to school. That destroyed me emotionally because I thought I wasn’t good enough. But then when I was 20 I started adult education classes. Due to those challenges from back then, today I am working at a supermarket where I still feel discriminated against because of my condition,” Sibiya said.
“Even though I am taking treatment, sometimes I still have seizures which take longer than 4 minutes. I always wake-up with bruises. Dealing with the seizures is one thing, but the constant humiliation and discrimination is stressing me to the point where I think death is better than living amongst people who don’t want you.”
Sibiya said people ask him why he continues to suffer seizures if his condition is treatable, and he says doctors have discovered that his problem is made worse by stress.
Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal causing seizures or periods of unusual behavior, and sometimes loss of awareness. It can affect males and females of all races, ages and ethnic backgrounds.
Seizure symptoms can vary widely. Some people with epilepsy simply stare blankly for a few seconds during a seizure, while others repeatedly twitch their arms or legs. Having a single seizure doesn’t mean a person has epilepsy. At least two unprovoked seizures are generally required for an epilepsy diagnosis.
Treatment is often in the form of medication or occasional surgery.
Nurse Ntombi Maluleka said “With the right combination medicines seizures can be limited. Patients with epilepsy should always make sure they take their medication, eat a healthy diet and keep their body active. They need to avoid alcohol, smoking, traditional medicines and mostly avoid stress at all time.”
Sibiya said he continues to go to work every day and hopes to be accepted by his community.
“Because if I don’t do that, I will die in isolation,” he said.
An edited version of this story was published by Health24.