Epilepsy Terminology, Myths & Misconceptions
Myths and Misconceptions
Modern treatment enables many people with epilepsy to lead normal lives. However, a number of outdated myths and misconceptions still surround epilepsy and there is still a lot of stigma attached to having the condition all of which can limit people’s participation in society and personal fulfilment. While the media can be a driving force in reducing and removing this stigma, communications may inadvertently add to the negative image of the disorder merely by the language used.
We ask the media to be familiar with the following points when researching an epilepsy related story.
Epilepsy is not a disease or an illness and it is not contagious. It is also not a ‘mental illness’. It is the most common serious neurological condition with approximately 37,000 people living with epilepsy in Ireland.
There is no causal link between epilepsy and intellectual disabilities. However, both are symptoms of underlying brain dysfunction or brain damage and sometimes their cause is the same. 30% of people with learning disabilities have epilepsy; 15% of people with epilepsy have learning disabilities.
During a seizure, people will not swallow their tongue or suffocate. Forcing open a person’s mouth and trying to hold their tongue, or inserting an object into the person’s mouth are the WRONG things to do. It is potentially dangerous both to the person helping (they may get bitten) and the person having the seizure (they may have their teeth damaged). Do not attempt to stop a seizure by holding down the person experiencing the seizure. The correct action to take is to roll the person on their side during seizure to ensure that their airway is not blocked, remove any sharp or hard objects from the area, protect the persons head with a cushion or pillow and loosen the shirt collar if necessary. See also: http://www.epilepsy.ie/index.cfm/spKey/seizureaware.seizure_first_aid.html
It is not usually necessary to call an ambulance when someone has a seizure. Most seizures do not require any medical attention. However, medical attention IS required in the following circumstances:
This is the first time the person has had a seizure.
The seizure lasts more than 5 minutes.
There are multiple seizures in a row.
The person is injured or asks for an ambulance.
Not all seizures involve convulsions in which the person becomes rigid and shakes. There are many different types of seizures involving different parts of the brain. Depending on which part of the brain is involved, there will be different physical symptoms. For example, a person may experience blank stares, rapid blinking, intense emotional and/or physical sensations (e.g. fear, joy, unpleasant sights or smells).
It is not true to say that you cannot die from epilepsy. There are about 130 epilepsy-related deaths in Ireland each year. Some of these are as a result of drowning or accidents occurring as a result of seizure-onset. About half are due to a phenomenon known as SUDEP (sudden unexpected death in epilepsy) See http://www.epilepsy.ie/index.cfm/spKey/info.sudep.html
There is no cure for epilepsy. Medical advances in treatments have made it possible for most people to live seizure-free but medications do not work for everyone and a significant minority of people still have uncontrolled seizures.
People with epilepsy can live normal, fulfilling lives. It is not the case that people with epilepsy cannot work or shouldn't be in jobs of responsibility and stress. People with epilepsy work at all levels and in all careers. We aren't always aware of them because many people, even today, do not talk about having epilepsy for fear of what others might think. There are some careers that people with active epilepsy cannot hold e.g. member of the Garda or Army or jobs involving driving.
Use of Terminology
Some terms and phrases used in association with epilepsy have become inappropriate, due to their negative connotations or inaccuracy. Please be familiar with our summary of appropriate terminology below.
Do not use: An Epileptic
Use: Person with epilepsy/ “has epilepsy”
We believe it is important not to define a person by their medical condition. It is the seizures that are epileptic, not the person. Use of "epileptic" as an adjective, as in "epileptic seizures" is appropriate.
Do not use: Disease/ Illness
Epilepsy is neither a disease nor an illness. It is a physical condition or physical disability.
Do not use: Victim/ Sufferer
Use: Person with Epilepsy
Words such as victim or sufferer depict the individual as being at the mercy of the condition. People do not necessarily “suffer” as a result of their epilepsy.
Do not use: Fit
The term ‘seizure' or ‘epileptic seizure' is preferred as people with epilepsy do not always experience convulsions. Similarly, phrases such as ‘spell’, ‘turn’, ‘conked out’, ‘keeled over’ and other such euphemisms should be avoided as they tell us nothing about the seizure. A description such as "he gave a cry, stiffened and fell to the floor unconscious" tells us what happened accurately.
Do not use: Grand Mal
Use: Tonic-Clonic Seizure
Do not use: Petit Mal
Use: Absence Seizure
In the interests of accuracy, the terms 'grand mal' and 'petit mal' should not be used to describe seizure types, as epilepsy is a very complex condition with many different seizure types. These terms are now outdated and have been replaced by a range of classifications which more accurately describe how different seizures manifest themselves. In addition, petit mal is often inappropriately used to describe some partial seizures. This term can generate significant confusion about what is being described.
Do not use: "foaming at the mouth".
Use: For e.g. "saliva was gathering around his mouth"
While the former phrase may not be inaccurate technically, the language is emotive and could be construed as having pejorative connotations. The latter phrase is descriptively accurate but without connotations. Similarly, phrases such as "drunk", "away with the fairies" or "haywire” should be avoided when describing the aftermath of a seizure. It is normal for people to be confused or disorientated during the period after a seizure.
NOTE: The word ‘brainstorm’ has been highlighted many times in recent times as a word that should be avoided as it is offensive to people with epilepsy. Epilepsy Ireland, in common with the majority of people with epilepsy does not consider the word to be offensive. A survey undertaken in the UK found that 93 per cent of people with epilepsy did not find the term derogatory in any way.
General language guidelines:
Please remember that language is very powerful and can have unintended effects. Someone might say for instance "she took a seizure on me the other day". An unintended implication of this is might be that the person may feel they are in some way to blame. Similarly, after a person has recovered from a seizure, it is inappropriate and insensitive to tell them that they "gave everyone a terrible fright". People can be emotionally vulnerable and easily made to feel responsible for upsetting onlookers. Catastrophising language to label seizures/epilepsy as frightening, awful, bad, horrible, etc should also be avoided. These phrases compound fear. It is be more appropriate to describe someone's seizures as "difficult to control" or “intractable”.