Non-Communicable Diseases (NCDs) OurHealth

Stigma haunts those living with epilepsy

Written by Cynthia Maseko

Growing up, Silindile Mkhwena says healers preyed on her family’s scant knowledge of her epilepsy. More than a decade later, she says she is still paying for society’s ignorance.

Silindile Mkhwena has been living with epilepsy for more than a decade and says more awareness is needed to combat stigma

Silindile Mkhwena has been living with epilepsy for more than a decade and says more awareness is needed to combat stigma (File photo)

Now 23 years old, Mkhwena developed epilepsy at about the age of 13. She says her family wasted years and money visiting healers and sangomas who promised to cure her of the condition.

“Prior to six years ago when I started treatment, my family wasted time and money taking me to different sangomas, but still no one seemed to cure me as they all promised to do,” she tells OurHealth. “Because (healers) knew how desperate my family was, (they preyed on) my family’s feelings and emotions to make money but not to help.”

While the number of people in South Africa living with epilepsy remains uncertain, a 2009 study found that about one in every 143 people surveyed reported having the neurological condition

Epilepsy is a neurological condition that causes recurring seizures. Although epilepsy can start at any age, it most often begins during childhood. While it is not possible to always identify the causes of epilepsy, the condition can be associated with strokes, sever head injuries or tumours.

Stigma starts early

Growing up, Mkhwena adds that children teased her relentlessly due to her seizures. A lack of general awareness about the condition meant that stigma has followed her from childhood into adulthood, she adds.

“Kids called me bad names such as ‘mafa avuke,’ meaning die, and ‘wake up’ and these names are still stuck with me even today,” she remembers as tears well up in her eyes. “People always advise me not to have a child because they say my child will for sure born with epilepsy.“

Although genetics can play a part in epilepsy, there is no guarantee that children born to people living with epilepsy will inherit the condition.

“No one chooses to be ill”

Mkhwena says she recently began working at a Nelspruit supermarket. She says her new colleagues have not dealt well with her seizures at work.[quote float= left]”… the public comments can destroy your self-esteem, and make you feel hopeless and useless”

“I have seizures while I am at work,” she says “I am usually (have no warning) when seizures are going to happen but when I wake up and see people’s reactions, that’s when I know I was unconscious”.

“(My co-workers) treat me like I don’t exist,” Mkhwena adds. “Believe me, they are worse than living with epilepsy.”

While she says that dealing with lifelong discrimination due to her illnesses has made her into a strong woman, she admits the comments and stares get to her.

“No matter how strong you think you are, the public comments can destroy your self-esteem, and make you feel hopeless and useless,” she says. “Being accepted by your family and friends does not mean the world will accept you as well.”

Although Mkhwena says she sometimes wishes she could hide her epilepsy, she tries to not care what other say about her. She does wish however that people would be taught from an early age what epilepsy is.

“At least kids with proper guidance and education learn to love respect other people’s feelings, and accept people with illnesses,” she says. “We’re not animals or evil people so stop judging us and give us a chance – no one chooses to be ill.”

An edited version of this story first appeared on Health24.

About the author

Cynthia Maseko

Cynthia Maseko joined OurHealth in 2013 as a citizen journalist working in Mpumalanga. She is passionate about women’s health issues and joined Treatment Action Campaign branch as a volunteer after completing her matric. As an activist she has been involved with Equal Treatment, Planned Parenthood Association of South Africa, Prevention of Mother to Child Transmission of HIV and also with Marie Stopes Clinic’s project Blue Star dealing with the promotion of safe abortions and HIV education.