FROM DESPAIR TO DETERMINATION: LUNGISANI NGCOBO’S JOURNEY WITH EPILEPSY

By Precious Mupenzi

• Lungisani Ngcobo from Inanda in KwaZulu-Natal today, 25 March 2025, gave a voice to those seldom heard, sharing his difficult and often misunderstood journey with epilepsy.
• He spoke at the official handover of the provincial report on the Draft Policy on Social Development Services to Persons with Disabilities that took place in Durban.
• KwaZulu-Natal’s Head of the Department of Social Development, Neli Vilakazi, reiterated the importance of grounding policy in real stories like Ngcobo’s.

“I wanted to die. I thought of suicide. But with help from Epilepsy Foundation South Africa, I managed to survive.”

These powerful words from 22-year-old Lungisani Ngcobo of Inanda, Durban, cut through the silence at the official handover of KwaZulu-Natal’s provincial report on the Draft Policy on Social Development Services to Persons with Disabilities, held in Durban in KwaZulu-Natal today, 25 March 2025.

Ngcobo’s testimony served as a stark reminder of the unseen battles many young people with invisible conditions like epilepsy continue to face.

Diagnosed in his late teens, Ngcobo shared how his life took a devastating turn just weeks into his first year at university, when he suffered a seizure and was forced to abandon his studies.

His voice not only captured the pain of living with a misunderstood condition but also highlighted the urgent need for inclusive policies shaped by the real-life struggles of those often overlooked by the system.

“I had just said goodnight to my friends and was walking up the stairs to my room when the seizures started. I don’t remember anything after that. I woke up in the hospital. My family decided I should come back home. I had to drop out,” he recalled.

Before that night, Ngcobo was full of dreams. He had been accepted into the human resource management programme at Durban University of Technology in 2020.

But what followed was a painful unravelling of his ambitions. His condition was misunderstood, and support was scarce.

“Some people told my mother it was witchcraft and wanted R50 000 for traditional healing. But we didn’t have that kind of money as my mother is a domestic worker, and I later lost my father in 2021. Eventually, I asked her to take me to the clinic. That’s where I finally got a proper diagnosis and started medication,” he said.

For Ngcobo, epilepsy not only disrupted his education but also nearly stole his life.

“I lost my teeth during one of my episodes. I fell crossing the freeway while trying to buy essentials and ended up in the hospital with injuries. The hospital told me they only issue false teeth to old patients, not someone my age. It crushed my confidence. A good Samaritan eventually helped me get false teeth, and that helped me feel human again.”

Accessing a disability grant became a relentless uphill battle for Ngcobo.

“The South African Social Security Agency kept referring me from one doctor to another. One doctor even told me I’m still young and should go find a job. I cried. My life had come to a standstill. I couldn’t study, I couldn’t work, and I couldn’t get any form of assistance.

“They told me I wasn’t disabled enough,” he said, his voice carrying both pain and quiet defiance.

Life-altering challenges

While epilepsy is medically classified as a condition rather than a disability, for those living with it, especially young people like Ngcobo, it can be just as life-altering.

The unpredictability of seizures makes it nearly impossible to find or maintain employment, as employers are often unwilling to take the perceived risk.

Social worker Thulile Makhutle from the Epilepsy Foundation, who has walked the journey with Ngcobo, explained the systemic challenges they face.

“Epilepsy is not always recognised as a disability. Ngcobo’s application for the disability grant was rejected on the grounds that he’s ‘not disabled enough’. But how do you measure that when someone’s life has come to a complete halt?” she asked.

Recognising this gap, Makhutle has become a vocal advocate for her clients

“People with epilepsy fall through the cracks of the system. They’re misunderstood, stigmatised, and excluded.

“Epilepsy may not be recognised as a disability, but the barriers our clients face are very real. I’ve taken it upon myself to advocate for them because they are at a massive disadvantage,” she said.

But with the support of the Epilepsy Foundation South Africa, a Department of Social Development-funded non-profit organisation, Ngcobo found his footing again.

He earned his driver’s license and completed an internship through the Department of Public Service and Administration.

He has now started another internship with the Department of Transport.

Despite these challenges, Makhutle praised the Department of Social Development for its continued support of organisations like hers. “Without the department’s funding, we wouldn’t be able to help people like Ngcobo, and our doors would be closed. The internship programmes we receive from the department are life-changing. He is one of our success stories.”

As the province begins the next chapter in disability rights advocacy, KwaZulu-Natal’s Head of the Department of Social Development Neli Vilakazi reiterated the importance of grounding policy in real stories like Ngcobo’s.

“Today is about acknowledging the voices that often go unheard and making sure that every concern raised translates into practical change,” she said.

Vilakazi further announced that a high-level action plan drawn from the provincial hearings will be embedded into the department’s Annual Performance Plans.

“We will work closely with other government sectors and the disability community to ensure that this is not just another report gathering dust,” she added.

For Ngcobo, each seizure is a reminder of a life once interrupted, but also of a future that still holds promise.

“I’ve pushed myself. I’ve challenged myself to embrace my disability. I’m not where I want to be yet, but I’m no longer in that dark place. I’m choosing to live.”