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Emily’s Perspective: What one word describes how you feel about epilepsy?

EmilyThis post is part of the Epilepsy Stigma Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

I have always worried about work. Do you need to take time off after a seizure? How long should you take to recover? Where do you stand in the grand scheme of things? All these questions rush through my mind every time I have a seizure. And, it turns out I am far from alone!

One word

I reached out to over 6,000 people online asking them how they feel about epilepsy, what it’s like for them, what it’s like for their family and what their life is generally like because of this. One young lady said her epilepsy is “Unpredictable!”


There are around 40 different types of seizure and a person may have more than one type, because of this, not everyone experiences what is known as an Aura before a seizure, making it very unpredictable. An aura – often called a warning – is a sensation which some people get just before they have a seizure. An aura is actually a simple partial seizure and can occur in isolation, without progressing into another seizure. I describe the sensation of an aura as feeling light headed, but it varies from person to person.


One comment that really caught my eye was someone saying they feel pride with their epilepsy. The respondent talked about how since the diagnosis the person has helped to raise awareness of seizures. In fact, they have helped a lot of people with this outreach. I never saw myself as feeling proud of what I do to help people until I saw this comment. It made me realize how important increasing awareness is, and I aim to challenge ignorance and celebrate strength within my columns on Living Well with Epilepsy.

What’s your one word?

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Passing the Baton

NEXT UP: Be sure to check out tomorrows post at Toteman for more on Epilepsy Stigma.

For the full Epilepsy Blog Relay schedule visit: https://livingwellwithepilepsy.com/epilepsy-blog-relay-2015

Follow Emily Lawrence (Nee Donoghue):

Contributing Writer

25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England. Emily's Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10. Based in UK.

3 Responses

  1. Marina Herring


  2. Tiffany

    I’m very new and just recently had my 2nd full blown seizure with 4 known auras. I’m still very early in learning everything about epilepsy and seizures so my 1 word is scary. I’m loving ready your blogs/posts because it does help to know others are going through similar feelings. Thank you.

  3. Soo Ihm

    Thanks so much Emily! Great post! I will see you on June 7th!