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Epilepsy terminology on Facebook

Created:

3 November 2015

Epilepsy Society's Stella Pearson looks back at our series of Facebook posts on epilepsy terminology and discusses comments and feedback from supporters.

At the beginning of September we started a series of infographic posts on Facebook looking carefully at the different terminology that is used for terms associated with epilepsy.

We wanted to make sure that supporters were aware of the terms that are becoming less appropriate, because they are unclear or inaccurate , or because they give a negative impression. We also wanted to give terms that would give the greatest clarity for doctors and epilepsy specialists during appointments.

Below is a collection of all the Facebook posts and infographics used, and a look at your feedback and comments under the posts.

Looking at the term 'seizure'

Our first post was on the term 'seizure' and the most accurate way to describe the wide-ranging experiences of people with epilepsy. We also looked at why the terms 'fit', 'attack' and 'turn' can be vague and confusing.

We had lots of great comments on Facebook that highlighted the need to clarify the language used when talking about seizures. Some people preferred the term 'seizure' to 'fit' and even felt that 'fit' could be used in a derogatory and insulting way towards people with epilepsy.

Here's the full post for the term 'seizure'

We describe an epileptic event as a seizure. This most accurately describes the wide-ranging experiences of people with epilepsy.  The words 'attack', 'fit' and 'turn' can sound vague and unclear. The word 'fit', for example, suggests a convulsive seizure but not all seizures are convulsive. The words 'attack' and 'turn' could relate to conditions that are not epilepsy, and so they can be confusing.

 

Looking at the term 'tonic clonic seizure'

We then looked at why we describe a convulsive seizure as a tonic clonic seizure, what the term 'tonic clonic' actually means and why a tonic clonic seizure is a more accurate term than 'grand mal'.

We had lots of positive comments saying thank you for all the information and that it was helpful to have this series on terminology. People also mentioned that they felt the term 'tonic clonic seizure' was a better term than 'grand mal'.

Here's the full post for the term 'tonic clonic seizure'

We describe a convulsive seizure as a tonic clonic seizure.Tonic means 'with muscle tone' so it describes muscles contracting (stiffening). Clonic means 'jerking'. Convulsive seizures are where the person's muscles stiffen (tonic phase) and relax rapidly and repeatedly, resulting in an uncontrolled jerking (clonic phase) of the body.  Tonic clonic seizure is therefore a more accurate term than 'grand mal', which translates as 'great harm' or 'great illness'.This doesn't give a description of what happens to the person, which can be veryimportant, for example, in giving accurate information to someone's doctor about the type of seizures they have.

Looking at the term 'person with epilepsy'

Our third post was on the term 'person with epilepsy'.

In this post we stressed the importance of focusing on the person rather than their medical condition, so it is more appropriate to say ‘a person with epilepsy’ rather than 'an epileptic'.

This post had a mixed reaction on Facebook. Many people agreed that they don't like being defined by their epilepsy, but we also had some supporters disagree.  Many people felt that this was a personal choice and that they didn't find the term 'epileptic' offensive.

Some people feel OK about saying 'I'm epileptic' because it describes how their condition affects them, but they don't like saying 'I'm an epileptic', which they feel does focus on their epilepsy rather than them as a person first.

Here's the full post for the term 'person with epilepsy'

It is important to focus first on the person rather than their medical condition. Therefore it is more appropriate to say ‘a person with epilepsy’ rather than 'an epileptic'.  We can also use ‘person affected by epilepsy’ – which includes not only the individual with epilepsy but also their family and friends.  It is okay to use the term ‘epileptic’ to describe a seizure, as in 'epileptic seizure'. This can be helpful as it describes the difference between seizures that start in the brain (epileptic seizures) and seizures which have a different cause, such as a psychological cause or a temporary change to the way the heart is working.

 

'Brainstorming'

Our next Facebook post looked at whether ‘brainstorming’ is acceptable to use when referring to gathering ideas in a group session.

When we conducted a survey among people with the condition previously, the overwhelming response was that the term 'brainstorm' is not offensive when used in its correct context of a group session to gather spontaneous ideas and develop projects.

Our supporters agreed that they didn't find the term offensive and that some people even felt more offended when people substituted the term 'brainstorming' for another term so as to not cause offence.

Here's the full post for the term 'brainstorming'

Epilepsy Society has been asked whether the word brainstorming' is offensive to people with epilepsy.   We conducted a survey among people with the condition, and the overwhelming response was that the term 'brainstorm' is not offensive when used in its correct context of a group session to gather spontaneous ideas and develop projects.  ‘Brainstorming’ is acceptable to use when referring to gathering ideas in a group session. It is not appropriate to use the word brainstorm in the context of a seizure.  What do you think about the term ‘brainstorm’?

The terms 'mild', 'moderate' or 'severe' 

Our fifth post looked at three different terms, 'mild', 'moderate' or 'severe'.

This post concentrated on describing someone's epilepsy in terms of how frequent their seizures are, how the seizures affect them, and how having epilepsy affects them, rather than using terms like 'mild', 'moderate' or ‘severe'.

We had some interesting discussions from this on Facebook with people thanking us for showing that the impact of epilepsy varies and shouldn't be defined by categories such as 'mild', 'moderate' or 'severe'. Supporters also stated that even accurately describing their seizures can never relate exactly to what a person is going through when they have a seizure.

While we understand the impact of epilepsy does vary greatly from person to person, we feel that describing epilepsy to specialists or GPs using accurate information can help them understand and treat an individual's epilepsy more effectively.

Here's the full post for the terms 'mild', 'moderate' or 'severe'

It is important to focus first on the person rather than their medical condition. Therefore it is more appropriate to say ‘a person with epilepsy’ rather than 'an epileptic'. We can also use ‘person affectedby epilepsy’ – which includes not only the individual with epilepsy but also their family and friends. it is okay to use the term ‘epileptic’ to describe a seizure, as in 'epileptic seizure'.  This can be helpful as it  describes the difference between seizures  that start in the brain (epileptic seizures) and seizures which have a different cause, such as a psychological cause or a temporary change to the way the heart is working.

 

The term 'absence seizures'

In our final Facebook post in this series we looked why it's clearer to  describe a seizure using the term ‘absence’ rather than the term 'petit mal', which translates as 'little harm' or ‘little illness'.

We had some lovely comments under this post thanking us for this series of Facebook posts and saying how brilliant it was for them to have this information to share with others.

Here's the full post for the term 'absence seizures'

In a typical absence seizure, the person becomes blank and unaware for a few seconds. If they are walking, they may continue to walk, but will not respond to what is going on around them.  'Atypical absences' may last longer than a few seconds, and may include a movement, such as a head nod.  The person is unconscious during an absence seizure, and may be at risk of harm, particularly if they have many absences close together in a 'cluster'.  ‘Absence’ describes the seizure more clearly than the term 'petit mal', which translates as 'little harm' or ‘little illness'.  Also they can miss vital information during the absence, such as important parts of a conversation or a safety announcement. Therefore describing absence seizures as 'little' may be inaccurate and dismissive.  The term 'petit mal' can be mistakenly used to describe focal (or partial) seizures, which are completely different. Specialists need accurate descriptions so that they can prescribe the right medication for the right seizure type.

Your feedback and comments have given us some great insight into how important terminology can be. These posts have also shown us that people want clarity on seizures and terminology to help with their own treatment when seeing doctors and specialists.

For more information on seizures