Overcoming stigma of seizures: Myths and misconceptions that burden people with epilepsy

A man suddenly falls to the ground, and, as onlookers watch, begins to convulse and froths from the mouth. The onlookers jump into action, holding him tightly, and perhaps forcibly pushing a piece of metal into his hands or mouth.

For a majority of us, this is still the most recognisable picture of epilepsy. Yet, this is a dangerously misinformed picture. Though one of the most common neurological disorders, affecting roughly 12 million people in India, epilepsy still largely remains shrouded in stigmatising myths and misconceptions. From what epilepsy is and how it is caused, to what people should do to help a person suffering a seizure, most people suffer from a dismal lack of awareness, says Dr U Meenakshisundaram, Senior Neurologist at Apollo Hospitals, Chennai.

Lack of awareness

“Epilepsy, we should know, is nothing but an abnormal electrical discharge in the brain,” he explains. Simply put, epilepsy is like a series of short-circuits among the neurons in the brain, which cause seizures. When a person repeatedly suffers seizures, the condition is called epilepsy. Epilepsy can result from a range of causes, including head injuries, strokes, congenital problems, tumours or bleeds in the brain, infections, genetic conditions, and several other unknown conditions.

However, says Dr Meenakshisundaram, this simple understanding of seizures is still not widely shared among people. Certainly, the numbers of those thinking of the condition as a curse or the result of some supernatural cause have reduced drastically, at least in urban areas. However, many people still consider it a psychiatric problem, and attach a lot of shame to it.

Another common mistake people make is to think of epilepsy in terms of convulsive seizures. However, explains the doctor, this symptom only occurs in certain types of seizures, and the variety of seizure symptoms varies depending on the part of the brain affected. “So, if the attack is in the area of the brain that has to do with laughter, sometimes people just begin laughing. This is called a gelastic seizure.” Similarly, seizures could manifest in the form of grimacing or crying (dacrystic seizures), going limp (atonic seizures) or even running (cursive seizures), he explains.

A manageable condition

People also think that a person with epilepsy is doomed to a lifetime of seizures. However, Dr Meenakshisundaram points out, the condition is manageable with drugs, and, in some cases, even curable through surgery.

Dr. U Meenakshisundaram

“If we can localise the place from which abnormal electrical discharges originate, we can go in and operate, there are surgical techniques available. But this is not for everyone. The majority need medicines. But epilepsy is a treatable condition. At least in 70-75% of patients, symptoms are manageable with drugs, even if we can’t cure the condition,” he explains.

Stigma and its effects

The lack of awareness about epilepsy often shrouds the condition in stigma. Research studies have documented the widespread stigma about epilepsy and the effect it has on persons with epilepsy when it comes to schooling, employment and marriage

Children with epilepsy are often discriminated against in school, while adults with epilepsy often report difficulties in getting and holding onto jobs. Girls and women, says Dr Meenakshisundaram, face the brunt of such stigma, as families fear that they cannot get married if their condition becomes known.

This can also lead to patients’ or their families refusing to accept the diagnosis and delaying treatment. “There is a high amount of denial. People don’t want to accept the diagnosis initially. We see it all the time. If treatment is delayed, there is the risk that patients can fall down and injure themselves. What happens if they have a seizure while crossing the road for example. What happens if somebody has a seizure while standing beside a well or on top of a building? Obviously, it can be fatal.

In very rare cases, he adds, patients may even die as a result of a condition called SUDEP – Sudden Unexpected Death in Epilepsy. Though the exact causes for SUDEP are not known, it is suspected that it may result from disturbances in breathing or heart rhythms during seizures.

Even when it comes to how to help a person having a convulsive seizure, several misconceptions exist. Most people believe that they should tightly restrain a person having convulsions and force a (preferably metal) object into their mouth. However, both of these could injure the person having a seizure. Instead, experts advise, a person undergoing convulsions should be gently rolled onto their side, with something soft cushioning their head from the ground, and any nearby objects that could hurt them moved out of the way.

One way to counter such problems, says Dr Meenakshisundaram, is for a person to carry a prominent ID card identifying that they are epileptic, the medications they are taking, and how they would like to be treated during a seizure. This would also help if they are taken to a hospital following a seizure, he explains.

However, for many people with epilepsy, such simple measures are not available thanks to the stigma and shame that surrounds epilepsy. “They don’t even tell their nearest relatives, sometimes,” says the doctor. But such secrecy is counter-productive, as it prevents people from knowing about others with the condition within their own circles, he observes. “If they share and everybody knows, then they can be helpful to each other and be each other’s support systems.

This article has been produced by TNM Brand Studio in association with Apollo Hospitals and not by TNM Editorial.