Myths are Just Images to Try Make Sense of Something Beyond One’s Understanding
Epilepsy-related false beliefs, erroneous or due to lack of knowledge exist worldwide, more so in poor countries. Lack of awareness about the disorder contributes to stigma and discrimination. The enacted and perceived stigma makes the person hide the condition and suffer quietly and not talk about it even when they need to do so.
MYTH: Epilepsy occurs due to supernatural cause, evil eye, demonic possessions and likes
Epilepsy is a treatable neurological disorder. The epileptic seizures are very brief and so dramatic that observers panic and fear them to be possessed by evil spirits, djinns etc. which is completely incorrect.
MYTH: All people with epilepsy lose consciousness and have convulsions
There are more than 40 different types of seizures and in every seizure a person does not jerk or convulse or become unconscious. ‘Tonic-clonic seizures are the commonest seizure- type where a person falls to the ground, becomes unconscious and starts to jerk. This may be accompanied with frothing, tongue bite with bleed and urinary/faecal incontinence. However, in some seizures mere muscle twitches, brief or no loss of awareness, confusion or disorientation and automatism may occur.
MYTH: Epilepsy is a life-long illness
Epilepsy is not necessarily a life-long condition. Some childhood epilepsy syndromes are self-limiting and around 70% of people with epilepsy become seizure free with regular and punctual intake of anti-seizure medications. Epilepsy is considered to be resolved in some people who have not had a seizure in 10 years and been able to stop medication for the last five of those years.
MYTH: Epilepsy is a mental illness
Epilepsy is not a mental illness. During a seizure the person may make unusual noises, utter strange words and behave oddly which is wrongly taken as mental affliction. However, due to chronicity of the illness, associated stigma and marginalization they can develop anxiety or depression.
MYTH: Epilepsy is contagious
Epilepsy is NOT contagious. One simply cannot catch epilepsy from another person.
MYTH: Restraining someone having a seizure is important.
Never restrain. Restraining someone during a seizure can further agitate or harm that person. The seizure will run its course and one cannot stop it.
MYTH: First aid for an epileptic attack is making the person smell a shoe
This is just a misconception. The duration of a seizure is so brief that by the time the panic settles in the onlooker(s) and a shoe is removed and attempt to make him smell, it is time for the seizure to end and the person to recover. This makes people believe that the person has recovered because of smelling the shoe which is not so.
MYTH: Something must be put in a person’s mouth to stop them from swallowing their tongue during a seizure
It is physically impossible to swallow one’s tongue. The worst thing that can happen during a seizure is that a person can bite the tongue. DO NOT PUT ANYTHING IN THEIR MOUTH, as they may bite on the object and break their teeth, or injure their gums, mouth or jaw. The first aid giver can also get harmed in the process.
MYTH: If someone has a seizure, they must be rushed to hospital
Not all seizures require hospitalization. Most often, the person will just need time to rest and recover after a seizure. Seizures of more than 5 minutes or a series of seizures without regaining consciousness in between is a medical emergency and requires hospitalization.
MYTH: Epilepsy affects intelligence
People with epilepsy possess the same level of intelligence as a healthy human being. Epilepsy has little to no effect on a person’s ability to think, except for a mental fog lasting for a short period following some seizures. Sometimes this may occur as a side effect of certain anti-seizure medications. Learning abilities of patients can be affected only if the frequency and intensity of seizures increase and with some anti-seizure medicines.
MYTH: Children with epilepsy need to attend special education school
Most children with epilepsy are as intelligent and competent as children without epilepsy and can attend regular schools. Inclusive policies of schools can help children with epilepsy grow into responsible contributing citizens of a country.
MYTH: People with epilepsy are disabled and cannot work
People with epilepsy are as intelligent and able as the rest of us. Some have severe seizures and cannot work; others are successful and productive in their careers.
MYTH: People with epilepsy cannot perform any type of job
If one has the right qualifications or experience and their seizures don’t put them or other people at work at risk, then they can be hired for most jobs. However, if one continues to have seizures with adequate treatment then some jobs compromise the safety of the person with epilepsy or other people. These include jobs that involve driving, flying, working at heights, near open water or fire, working with unguarded machinery, jobs requiring handling of ammunition, etc.
MYTH: People with epilepsy cannot drive
People with poorly controlled epilepsy pose a danger for themselves and others on the roads. However, people who are seizure free, taking anti-seizure drugs and are under regular medical check-up can drive after a certain period of time which depends on the rules laid down by the country’s driving authorities. Generally, after one or two years of complete seizure freedom with continued medications the person is allowed to drive.
MYTH: An epileptic patient can never get married nor have children
Epileptic patients can marry and lead a healthy life. Epilepsy does not generally affect a woman’s ability to conceive and has a minimal effect on a child’s development. However, if women are taking anti-seizure drugs, the risk of birth defects may increase which can be minimized by prescribing the safest ASM in the minimal required dose and close collaborative care of the neurologist and obstetrician. Preconception counseling is very important.
MYTH: Children of people with epilepsy inherit the disorder
Children of parents with some forms of epilepsy can develop epilepsy, but that risk is very low.
MYTH: A person with epilepsy cannot lead a normal complete life
People with epilepsy can live a completely disciplined lifestyle. They need to follow a routine where medicines need to be taken regularly, avoid extreme situations and do away with things that can precipitate a seizure. Before undertaking any activity, one must analyze personal risk in case of a seizure, especially if they are not well-controlled. Such activities should then be avoided or undertaken under supervision with great caution.
MYTH: A seizure means one has epilepsy
Not all seizures can be attributed to epilepsy. Seizures can happen for other reasons, like high temperature, low sugar levels, altered electrolyte levels, toxaemia of pregnancy, binge drinking etc. To be diagnosed as a case of epilepsy, the patient must have suffered at least two unprovoked stereotyped seizures 24 hours apart.
MYTH: A person with epilepsy cannot participate in any sports
Majority of sports are safe to participate with special attention to adequate seizure control, close monitoring of medications, and preparation of family, coaches, or trainers. Contact sports including football, hockey, and soccer have not been shown to induce seizures, and epileptics should not be disallowed from participation. Water sports and swimming in a pool are felt to be safe if seizures are well controlled and under direct supervision.
Additional care must be taken in sports involving heights such as gymnastics, rock climbing, mountaineering, horseback riding and likes. Sports such as swimming in open seas, skydiving, paragliding, or scuba diving, are not recommended, given the risk of severe injury or death, if a seizure were to occur during the activity.
MYTH: The person must be given out of schedule prescribed medicine following a seizure
Nothing per orally, liquids or medicines should be forced into the mouth of an unconscious person as the person can die due to choking. Out of schedule medicine is not required.
