How to refer to someone with epilepsy is a subject that sparks much debate. Should you say a "person with epilepsy" or an "epileptic"? Liverpool University, in a unique piece of research, surveyed over 900 people with epilepsy and significant others from the UK and Ireland (including Epilepsy Ireland service users and members) about which terminology they prefer to use.
The main findings from the study were:
- 87% of those with epilepsy and 93% of significant others chose the so-called 'person-first' term ("I have/they have epilepsy'') as the one term they preferred. The more traditional ("I'm/they're epileptic") and so-called disability-first term ("I'm/they're an epileptic person'') were not liked by most participants
- Many said they preferred the person-first term, ''I/they have epilepsy'', as they felt it's less likely to have a negative association.
- The study also found a strong dislike of the use of the word 'disease' to describe epilepsy. A few years ago, The International League Against Epilepsy (ILAE) defined epilepsy as a disease rather than a 'condition' or 'disorder'.
Telling quotes included:
- "'Epileptic' is a word so old that it was used in the Bible! It's an historic word which again incites a range of discriminatory thoughts/behaviors and invites ridicule and fear in equal measure to the affected person" (Participant with epilepsy, male, aged 38).
- "When I say I'm epileptic it scares people, but when I say I have epilepsy it sparks curiosity and I can explain it'' (Participant with epilepsy, male, aged 20)
For more information on the study log onto: http://www.epilepsybehavior.com/article/S1525-5050(16)30515-7/fulltex.
See also: Debate on this issue at the 2014 National Epilepsy Conference