More Than The Disease, Epilepsy Patients Battle Stigma, Say Experts

When 19-year-old Ritu (name changed) had her first seizure in her village, neighbours gathered quickly — not to help, but to whisper. Someone blamed an evil spirit. Another suggested her family had angered the gods. Instead of being taken to a hospital, she was taken to a faith healer.

It would be three years before Ritu finally met a neurologist. By then, she had dropped out of college, avoided social gatherings, and stopped talking about her future. “I was more afraid of people than of the seizures,” she recalls.

Ditto is the travail of 32-year-old Seema (name changed), an IT professional from Delhi. She remembers the embarrassment more sharply than the seizure itself. It happened at a crowded market in the afternoon. “I could hear people panicking. Someone tried to hold me, someone else moved away. Later, a woman asked my mother in a whisper if this meant I had a mental problem,” she says.

Diagnosed with epilepsy in her early twenties, Seema says access to doctors in the capital was not the real hurdle — attitude was. At work, she hid her condition, afraid projects would be taken away. “Everyone is educated, yet they react with fear,” she says.

Doctors say Ritu and Seema’s stories are painfully common in India.

Epilepsy is a chronic brain disorder marked by recurrent seizures. Estimates suggest more than 15 million people in the country live with the condition. Yet a large number do not seek timely medical care, as fear, stigma, and deep-rooted myths continue to delay diagnosis and treatment, particularly in smaller towns and rural areas.

Dr. Madhukar Bhardwaj, Director & HOD – Neurology, Aakash Healthcare, said that a seizure occurs when the brain’s electrical signals stop working normally for a short time. Because of this, a person may shake, fall down, stare blankly, or lose awareness. Some seizures are mild and last only a few seconds, while others can be more serious.

However, he noted that patients are still hesitant to go to the hospital, especially in rural areas, as many myths about epilepsy still exist in society. “Some people believe it is caused by ghosts or black magic. Others think it spreads by touch or that people with epilepsy cannot study, work, or get married. Another dangerous belief is that something should be put into the mouth during a seizure. All these beliefs are false and can harm the patient,” Dr. Bhardwaj said.

Dr. Neha Kapoor, Associate Director & Head – Neurology, Asian Hospital, said, “The causes of epilepsy are different for different people. In many cases, doctors cannot find an exact cause. However, epilepsy can happen due to family history, head injuries from accidents, brain infections like meningitis, strokes, or brain damage.”

She added that in children, epilepsy may result from lack of oxygen at birth or problems in brain development before delivery. Stress, sleep deprivation, and alcohol may trigger seizures, but they are not the root cause.

Echoing similar concerns, a systematic review and meta-analysis titled “Prevalence of paediatric and adolescent epilepsy in India,” conducted by paediatric specialists from AIIMS Jodhpur, found that over 60 per cent of cases begin before the age of 18. Many are linked to infections, birth complications, and early brain injury. While effective anti-epileptic medicines exist, timely diagnosis and access to treatment remain uneven, particularly in rural and underserved areas, the doctors noted in their findings published last year in the European Journal of Epilepsy.

“Early diagnosis is often difficult because seizures do not always look dramatic. Not all seizures involve shaking,” pointed out Dr. Praveen Gupta, Chairman – Marengo Asia International Institute of Neuro and Spine (MAIINS). “Some seizures look like daydreaming or confusion, which is why epilepsy is often missed. Early diagnosis is very important.”

“Epilepsy affects people of all ages, but many patients reach us very late because of fear and wrong information,” said Dr. Gupta. “With timely treatment, most patients can live a completely normal life.”

He further said that in India, epilepsy surgery is also being used successfully. “Surgeons carefully locate the part of the brain causing seizures and remove or treat it safely. This can greatly reduce or even stop seizures, giving patients a much better quality of life.”

Dr. Gupta added that surgery is usually considered only after medicines have been tried, but it offers hope for those with drug-resistant epilepsy. He further noted that for patients whose seizures do not stop with medicines, a condition called drug-resistant epilepsy, advanced treatments are now available. “Modern treatment options, including advanced surgery and neuro-robotic techniques, are offering new hope to patients. These treatments are changing outcomes.”

Epilepsy can also have less-discussed consequences. Dr. Vineet Malhotra, Principal Consultant, Urology, Sexology, Andrology, Infertility Treatment, SCM Healthcare, said epilepsy can also affect men’s sexual life. “Seizures, stress, and some anti-seizure medicines may sometimes lower energy, affect hormone levels, or reduce sexual desire.” However, he said that doctors can help manage these issues through lifestyle advice, medicine adjustments, and counselling, so patients can lead healthy, active lives.

The specialists emphasised that epilepsy must be treated like diabetes or hypertension — a manageable medical condition, not a social curse.