What words should we use to describe epilepsy? Help us!

Just as everyone’s experience of epilepsy is unique, the way in which people talk about their epilepsy is also down to individual choices.
There might be words that one person chooses to use, that someone else doesn’t feel comfortable using to describe their own experiences.
The Hub is s safe and inclusive space to discuss these, and we are asking that all our users are respectful when thinking about the language that is used here.
Let us know below some of the words you use to describe your epilepsy, and how you talk about your experiences.

I refer to mine as focal seizures. I use the word ‘fit’ in conversation but wouldn’t formally use it. I also refer to myself as having ASD or high-functioning autism rather than ‘Asperger Syndrome’. Though ASD is becoming less commonly used as the D stands for disorder which is considered to be potentially offensive.


confusing, random, and isolating!


Weird, educating and Inspiring!

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