Epilepsy terminology on Facebook
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.
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'.
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.
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.
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.
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.
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.