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!
About the author
Phylis Feiner Johnson has been a professional copywriter for 30 years. She also spent 20 years with epilepsy. She writes from the heart to increase education, awareness and funding for epilepsy research. For further information, contact The Epilepsy Foundation of Eastern Pennsylvania at http://www.efepa.org/ and please make a contribution to become an advocate, too.