Epilepsy Talk

Twitter is not our friend. | November 8, 2022

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 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 500 million tweets per day and around 200 billion tweets per year worldwide, as of 2022.

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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Resources:

http://www.ncbi.nlm.nih.gov/pubmed/22134096

https://www.theguardian.com/society/2020/may/15/malicious-tweets-targeting-epilepsy-charity-trigger-seizures h

ttps://twitter.com/epilepsysociety/status/1261371767148470274

https://epilepsysociety.org.uk/news/epilepsy-society-sees-worst-ever-bullying-attack-twitter

https://threatpost.com/epilepsy-foundation-twitter-seizure-triggering-posts/151178/

https://newatlas.com/computers/epilepsy-foundation-twitter-strobe-seizure-gifs-law/

https://www.dsayce.com/social-media/tweets-day/


6 Comments »

  1. Pretty obvious if you ask me. NOBODY who is of the world, would dare to chance to have 1 person with epilepsy to be joined with them of THEIR WORLD & this NWO we are currently living in at the early signs, to where THE WORSE IS TO COME. Wait until we can no longer get the drugs we need OR THEY decide WHO & WHEN we can get the drugs we need & WHERE we need to go and get them. That may be when the RAPTURE of Jesus happens, & Gods wrath & fury comes quicker than a blink of an eye, as then their day of pay back from God starts to happen. ROMANS 12 is what I am talking about, as maybe most of you know that book well. It’s how I try to live my life by, but there IS a BIG DIFFERENCE between sheep & goats, when some to most people could care less what you say to them or HOW you try to help them, more than what they can even imagine. Some things do not need to be required to have devices or drugs in your life. And there are some people who could care less to never be near you or talk to you face to face, when you mention somethings like this. O’WELL, I’ll still sleep at nights.

    Liked by 1 person

    Comment by James D — November 8, 2022 @ 10:42 AM

  2. I think the sad part of this is that despite all the rhetoric of “coming together” and “equality for everyone” and all that great stuff….. there is still a TON of confusion in regards to “negative” projections when it comes to individual communication!

    People use the terms Black and White and Brown to signify an individual persons heritage, race, etc and this is supposedly a good thing!…… but using the terms Yellow or Red are absolutely forbidden in culture and termed “racist”!…

    Or people will still use the phrases “dont be a pu$$y” or “dont be such a chick!”, when someone is being “weak” or fearful….. or someone might use the term “gay” when describing their frustration or disappointment when an activity doesnt go their way!

    We use certain terms in our casual communication and many of those terms carry old stigmas from older cultures in which derogatory communication was accepted!

    Epilepsy has long been held as a result of being “possessed by the Devil” and there are a great many deeply religious people in our society and in our world!

    We have to keep in mind that Twitter isnt just an American thing, there are countries where women are stoned to death because they dont have their head dress on correctly!

    I was an advocate for Facebook back in the “old days” until it became popular and by that time, I had already experienced the horrible affects of uncontrolled social media! Ive been playing online video games for over 20 years and was involved in the internet before people even knew what it was! People ENJOY insulting and degrading others…. its just a plain fact!

    The internet is an amazing tool…. and with it comes an amazing responsibility that often gets overlooked or downright ignored because there is ZERO repercussion!

    Personally I boycott all of it…. I still have a Facebook acct so that I can connect with old friends, but I NEVER use the actual platform. I have never used Twitter or TikTok or any of those platforms because like I said, they are a great tool when used properly, but they get abused and misused much more often and I truly do not want to support that!

    No one says please and thank you anymore… everyone gets frustrated when things arent perfect or mistakes happen…. people are violent, not just physically, but mentally and emotionally!

    But this is what happens when people get everything at their finger tips or given false knowledge due to lack of education!

    Liked by 1 person

    Comment by Aaron Holmes — November 8, 2022 @ 3:41 PM

  3. I did a novel analysis of commentary on a story of a government worker causing a seizure-induced car crash, and I found something very similar (it made it through peer review, but I ultimately withdrew it for lack of cash required by open-access journals). Check it out if you’re curious – https://tackingonthestyx.com/do-bloggers-stigmatize-epilepsy/

    Liked by 1 person

    Comment by Jeffrey Lee Hatcher — November 9, 2022 @ 9:38 AM

  4. From what I have experianced people will be cruel behind a computer screen but not so likely to say it to your face. It’s always said behind your back.

    Liked by 1 person

    Comment by Bonnie — November 11, 2022 @ 7:26 PM


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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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