Kamala (name changed), an epilepsy patient, was shocked to see her marriage collapse in a day when her husband witnessed her seizures and threw her out of the house. He also called a lawyer to annul the marriage, citing that she was “mentally unstable.”
Kamala, who married on her parents’ insistence, had feared this. “I was nervous and I had the seizure on the first night of my marriage. I had not carried my medicines for fear that my condition would be disclosed. But my in-laws threw me out the very day,” recounts the 42-year-old, who has remained unmarried.
Her case is among the many that are part of the World Health Organisation study, which declared India and China as countries that have the maximum annulment of marriages due to epilepsy last year.
The condition, one of the commonest neurological disorders, is not only associated with a huge disability burden but is also beset with a range of immeasurable psycho-social problems as has come out through a group of patients, researchers and even social workers.
Researchers from Pune, Ludhiana, Kerala, Himachal Pradesh, West Bengal, Kerala, Hyderabad, Baroda and UP have come together to carry out a detailed research in this regard, by Indian Council of Medical Research (ICMR).
“Marriage among people with epilepsy is a compelling yet unexplored theme in social research, requiring close collaboration between neurologists, who manage epilepsy and social scientists. The ICMR recently convened a meeting of neurologists with expertise in epilepsy management, neuropsychologists and social scientists to identify research gaps and pose research questions in relation with marriage and the pre-existing occurrence of epilepsy,” Dr Gagandeep Singh, department of neurology (Ludhiana), said
He, along with Pune-based Yashodha Wakankar from Sanvedana foundation, an epilepsy support group that runs a marriage bureau, will collate the information from various parts of the country to understand epilepsy and marriage.
Wakankar, who was cured of seizures in 2004, decided to start the support group for epilepsy and the marriage bureau in Pune. She feels myths relating to the disease were far more shocking than the seizures themselves.
“I had epilepsy from childhood and after having suffered seizures for long I underwent a surgery in 2003 after which I became seizure-free. I then decided to do my bit to help others, and realized that the biggest road blocks were at the time of weddings, when people faced stigma and discrimination as society was not willing to accept them,” she said.
The group has, in the last 14 years, helped conduct 25 weddings of epileptic patients, which have been successful as both parties were aware of the condition. However, arranged marriages without disclosure continue to be worrying.
Interestingly, even as the word epilepsy was removed from the Hindu Marriage Act 1955 and Special Marriage Act, the social stigma has not gone away, Singh added.
Meera (name changed) an IT professional adds that she had decided to reveal her condition to her husband after marriage as she had been off seizures for some years. However, the professional had to face a divorce when her husband and his family refused to understand the issue. “There is total lack of awareness and people associate it with something very scary,” Meera shared.
Singh adds that once the data is with the group they can assess the responses as per geographical area, age group, social economic changes and the general attitudes. “We can present the data to the government,”added Singh.
“We get many phone calls about our bureau. Many parents believe that marriage is the cure to their son’s or daughter’s epilepsy. One has to consult a neurologist and undergo proper treatment. Our epilepsy marriage bureau is for the people living with controlled epilepsy or for the people who get epileptic seizures very rarely as well as those who have undergone brain surgery, and are living a seizure-free life. People who do not have epilepsy, but are ready to marry a person with epilepsy history, are also welcome,” added Wakankar. Another matrimonial meet will be held on March 4.