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Talking about epilepsy

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An image to illustrate the dilemma of deciding whether to talk about your epilepsy

To tell or not to tell

Deciding to tell someone about your epilepsy can be difficult. Epilepsy Society’s Jenny Rush asks who do people open up to, and why?

Mention the word ‘epilepsy’ to someone and it can evoke unpredictable responses. Many people are fine with it. But sometimes the look of initial panic in the eye of someone you’ve just mentioned epilepsy or seizures to can be palpable.

The awkward response to the mention of epilepsy can be perplexing. And that means that when someone affected by epilepsy walks into a room there can often be a decision to be made. To tell or not to tell? We decided to find to ask the question and 100 people filled in our survey.

Their responses show that it’s a dilemma.  Tell people and you may get a perfectly fine and sensitive response, but you also risk an inappropriate, hurtful and even aggressive outburst. Don’t tell people and you can become isolated and begin to think of epilepsy as something too scary to talk about. There can be a real sense of ‘damned if you do and damned if you don’t’.

People affected by epilepsy said they react in different ways to this.

 

You can read more about how different people handle the decision of whether to talk about their epilepsy or not, in the latest issue of Epilepsy Review.
For £13.50 (incl p&p) you can subscribe to Epilepsy Review for a year and receive three copies of the magazine. (You can order your subscription through the online shop.)

Or why not join one of our membership schemes and receive the magazine for free.




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