Epilepsy Talk

Epilepsy in Twitter Times | December 17, 2019

Twitter is not our friend.

And the misconceptions and stigma of epilepsy live on.

A revealing study published in Epilepsy & Behavior provides evidence that the perception of epilepsy is not faring well in social media. 

Kate McNeil and colleagues from Dalhousie University in Canada analyzed data collected from Twitter to provide a snapshot of how epilepsy is portrayed within the Twitter community.

Over 48 hours, a Twitter search was used (1712 tweets) containing the word “seizure” or “seizures.” Then, McNeil and colleagues reviewed 10,662 tweets, originally collected over a seven-day period in April, 2011 as an example of seizure-related posts.

To establish a classification system, categories were defined as Metaphorical (32%), Personal Accounts (31%), Informative (12%), and Ridicule/Joke (9%). The authors found that almost 41% of all seizure-related tweets were either disparaging or derogatory in nature.

Fortunately there were a few tweets that spoke out against mocking those with seizures.

My favorite is: “Attach your brain 2 a car battery & see how funny it is!”

This just serves to underscore what we already know. The negative attitude towards epilepsy lives on…and on.

And the irony is that although Twitter could hold the power to positively affect how epilepsy and seizures are perceived, it’s advancing negative attitudes toward seizures with the potential for fueling the stigma fire even more.

This is social networking and “sharing” at its worst.

With an audience of millions.

There are approximately 110 million tweets per day from 200 million users worldwide, as of January 2011.

C’mon Twitter. Instead of being a bad guy you could do so much good.

And, by the way, epilepsy is no joke!

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14 Comments »

  1. Well I wish they had an epilephy group here in escondido

    Liked by 1 person

    Comment by michael Hartman — December 17, 2019 @ 12:39 PM

  2. 😦 😦 😦

    With cut backs in funding, many local epilepsy offices have closed.

    Like

    Comment by Phylis Feiner Johnson — December 17, 2019 @ 12:42 PM

  3. I know this isn’t a new thought but aren’t there a lot of completely evil peopelin the world; lots of lovely ones too as well, of course. What kind of twisted pleasure can they possibly get from this kind of thing. This targeting would be unbelievable if we didn’t actually know it had happened.

    Liked by 1 person

    Comment by Margaret Hay — December 17, 2019 @ 2:08 PM

  4. This is why I don’t do Twitter.

    Liked by 1 person

    Comment by paleobird — December 17, 2019 @ 3:14 PM

    • Me neither. There’s only so much social media I can take.

      And I’m on 20 Facebook forums! (Plus my own Epilepsy forum there.)

      Enough is enough…

      Like

      Comment by Phylis Feiner Johnson — December 17, 2019 @ 4:18 PM

  5. I personally think the lack of education in regards to Epilepsy and what a person goes through is a contributing factor of certain individuals negativity towards those who suffer with Epilepsy.

    Liked by 1 person

    Comment by Maria Beasley — December 17, 2019 @ 4:31 PM

    • I couldn’t agree more. Ignorance = stigma.

      Like

      Comment by Phylis Feiner Johnson — December 17, 2019 @ 4:32 PM

    • I know someone who gets mixed up between Ep and exema There is supposed to be an Epilepsy day 26 March (?) but nothing appears on the TV in the UK. Perhaps I should write to the BBC to tell them to do something

      Liked by 1 person

      Comment by squirrel37 — December 22, 2019 @ 1:46 PM

      • That would be wonderful!

        Maybe also a Public Broadcasting Channel. (If you have it in the UK.) In the US, we call it PBS.

        Newspapers?

        Just some thoughts…

        Like

        Comment by Phylis Feiner Johnson — December 22, 2019 @ 1:56 PM

  6. I was talking to a friend just the other day about how we could ‘educate” people about epilepsy. Our defintie opinion was that we need to start with awareness lessons at school – a bit like they seem to have started doing to help children to deal with emergency heart attacks, I agree with Phylis, it is often ignorance, causing fear, that makes for misunderstanding and unkindness. However, to me, there will never be any excuse for what these morons did regarding these tweets

    Liked by 1 person

    Comment by Margaret Hay — December 17, 2019 @ 6:22 PM

  7. You might enjoy this article, Margaret:

    “Epilepsy Smart” Schools

    https://epilepsytalk.com/2013/09/02/epilepsy-smart-schools/

    Like

    Comment by Phylis Feiner Johnson — December 17, 2019 @ 8:34 PM

  8. You might be interested in the link below – tips for people with Traumatic Brain Injury might be useful to the subset of us who have seizures.

    https://www.brainline.org/article/survival-tips-holidays-brain-injury

    Liked by 1 person

    Comment by HoDo — December 23, 2019 @ 11:15 AM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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