Epilepsy Talk

Epilepsy in Twitter Times | June 4, 2012

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!

Resources:

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

http://www.epilepsy.com/newsletter/january12/epilepsy_twitter

http://my.epilepsy.com/newsletter/january12/epilepsy_twitter

http://www.elsevier.com/wps/find/authored_newsitem.cws_home/companynews05_02243

http://blogs.forbes.com/oliverchiang/2011/01/19/twitter-hits-nearly-200m-users-110m-tweets-per-day-focuses-on-global-expansion/


10 Comments »

  1. I prefer to stay away fromTwitter because it forces people (all people) to compose a (what is it?) 14 word retort or response or statement that is immediately read by ALL OF TWITTERDOM? No. Not for me. I use my computer day in and day out, but I do try not to type up anything I cannot review the next day, before publishing it. Hence, no Tweets for me.

    Like

    Comment by Michele — June 4, 2012 @ 3:54 PM

  2. I used to blog about seizures, but since no one actually read it, they didn’t take issues seriously and gave up writing on it. I feel the same way with YouTube as Twitter, have you gone on there recently? The majority of them are jokes about flashes of screens to “test” to see if you really have seizures or if you’re faking it. Unless you’re really actually testing yourself, its not a joke to be play with that kind of stuff if you really are photosensitive.

    Not very many of them are actually educational videos. I have serious issues with that. I would think there would be more educational videos to say at the least.

    Like

    Comment by Liza — June 4, 2012 @ 5:18 PM

  3. I think this is because more young people use the social medias then the rest of the population. And as you know, kids will be kids. 🙂 But still, the bottom line is there needs to be more education on seizures. Before my 1st Grand Mal, i had no idea what a seizure could be. I didn’t even know that what i had experienced before my first GM was seizures of a lesser type. Had I had know that what i was experiencing were seizures, I would have gone to the doctors much sooner, rather then pass it off as a passing phase. Then my brain tumor may not have gotten so big, the size of a baseball. Seizures can be very harrowing. Here is my latest write up in my diary on my last seizure last Friday.

    6/1/12 – 7:00pm after talking with mom on IM i had a seizures. Fingers felt funny for like 1 min, felt like someithing was going on, but it could of been a false alarm, but it felt weird to the point where i knew something was not right, not the normal 5-10sec false alarm i sometimes have. Thoughts of what if this is the one that will kill me, ran through my head?
    Then it started, it’s like it’s electifying, the pressure pumping starts,the thumping, the racing heart beat, like sparks on my fingers, the fingers started to move, then i knew i need to take the meds, the meds came off the phone with some difficulty, they ended up on the carpet. Picked them up and put them in my mouth, didnt’ know how to orient it very well, but with my tounge and finger i was able to put it under the tounge.

    The seizure kept on increasing in intensity and going up my arm. Then when it was near my upper arm, it stopped, then quickly started for a few more seconds, then it stopped for good. It lasted like a minute before Ativan put a stop to it. It has been 8 weeks and 1 day since my previous seizure. This one seemed to me that it might of blown into a big seizure, if it were not for Ativan.

    Like

    Comment by Zolt — June 4, 2012 @ 6:11 PM

  4. OMG. Poor Zolt! Too bad you couldn’t tweet that to the guys at twitter!

    Like

    Comment by Phylis Feiner Johnson — June 4, 2012 @ 6:45 PM

  5. I personally do use social media, but actually to be in support groups. There are pages on Facebook for the National Epilepsy Foundation, as well as many local branches. Other groups like the Epilepsy Blogger, International Prayer for Epilepsy, and Epilepsy Advocate actually help me – knowing there are others out there, and supporting each other as we do here.

    As for Twitter, I use it primarily for getting information – companies, news, etc. – and don’t search it otherwise that much. Some of the groups I mentioned do have Twitter accounts though that I follow them, and have created a list specifically for the topic of epilepsy.

    I think that both the hardest thing & the most important thing is advocating awareness. I have begun to share my epilepsy more openly, but in doing so I also want to educate others. Its hard sometimes to be on Facebook or Twitter and see others being able to do so much, while I am still fighting my health. But I’ve been told many times that there is a reason – maybe this it.

    For you pleasure – an album I have collected of epilepsy support images: https://www.facebook.com/media/set/?set=a.655227367588.2080201.64702444&type=3&l=39f4b0bf24

    Find me on the Epilepsy Foundation’s eCommunities: pghkatrina

    Like

    Comment by pghkatrina — June 5, 2012 @ 12:07 PM

    • Thanks for sharing that link. I’m going to pass that on to my support group members.

      Like

      Comment by Charlie — June 10, 2012 @ 3:39 PM

  6. Yes! I do recognize you from the EFA website! And I, too, subscribe to other epilepsy websites (other than my own!) such as http://www.epilepsy.com (great info!)

    Plus, I’m on Facebook and “belong” to several groups like EP Land, Epilepsy Empathy, Epilepsy Connection, Epilepsy Friends and a bunch of essentially no-talk pages like Epilepsy Therapy Project, End Epilepsy, Epilepsy Awareness. (You might want to check some of them out, if you have the time.)

    But frankly, I use the social media as a way of helping people with questions, problems, etc. So, you might say, I use it as a means to an end.

    I do know people who use Twitter constructively, but I neither trust it as a contributer, nor am I eager to use it as a source. I guess you’d say, I contribute to places I trust only.

    But your point is well taken and I do agree that if we don’t educate people about epilepsy in all media (even Twitter) then we don’t have as great a chance of erasing the stigma. Hence this website!

    So I think, basically we’re in agreement. And I love your album!

    Like

    Comment by Phylis Feiner Johnson — June 5, 2012 @ 1:02 PM

  7. Thanks for the this, about the stigma some of the Twitter users have! (although it doesn’t say the users age)! – If you don’t mind I’m going to give you a link from my site – as people need to know what stigma is and how insensitive they are!

    http://aboutheadinjury.wordpress.com/

    Like

    Comment by Stephen Hughes — June 11, 2012 @ 8:22 AM

  8. […] Epilepsy Talk went in to more detail and here is there link: https://epilepsytalk.com/2012/06/04/epilepsy-in-twitter-times/#comment-7760 […]

    Like

    Pingback by Twitter, and search for ‘seizure’ tweets! | — June 11, 2012 @ 8:43 AM

  9. Mmmmm. The truth comes out. I’m a lurker for “About Head Injury” but not a subscriber. What a wonderful site!

    Question: Whatever happened to http://www.braininjury.com They seem to have fallen off the edge of the earth and become some creepy law website.

    Like

    Comment by Phylis Feiner Johnson — June 11, 2012 @ 7:35 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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