Twitter can be a great platform for disseminating reliable medical advice and information. Unfortunately, it can also spread misinformation and downright offensive commentary about medical conditions and the people who live with them. That sad fact was illustrated in a study conducted by neurology researchers at Dalhousie University, who sought to investigate stigma regarding epilepsy on Twitter. A preliminary 2-day analysis showed that the word “epilepsy” mainly brought up informational content, so for 7 days they searched only for tweets containing the words “seizure,” “seizures,” “seize,” and “seizing.”
Among 1,504 such tweets analyzed, nearly a third (32%) were categorized as “metaphorical,” such as “My blackberry just had a seizure.” Another 31% were personal accounts, such as “I feel so helpless when my dog has a seizure.” Just 12% contained informative, factual information about seizures, while 9% were ridicule/jokes, including “What do you do when someone’s having a seizure in the bathtub? … Throw in a load of laundry.” Others were categorized as miscellaneous, opinion, and advice seeking, accounting for 8%, 6%, and 2% of tweets, respectively.
A majority of the metaphorical comments were derogatory in nature. Taken together with the ridicule/joke tweets, these negative comments accounted for 41% of the sample. “This is a big problem…Even though we may think we’re doing a good job of reducing stigma, we’re not,” Dr. Paula M. Brna said in an interview during the American Epilepsy Society (AES) Meeting, where she presented the study findings in a poster.
Indeed, the “laundry” joke was re-tweeted an “astonishing” 77 times in a 24-hour period, Dr. Brna and her associates wrote in their paper, which was posted online the week of the AES meeting.
There were a few tweets that spoke out against the offensive tweets. One tweet said “Why do people joke about epilepsy and seizures? Do they joke about cancer? Attach your brain 2 a car battery & see how funny it is!”
The authors wrote, “The online voice of those speaking out against such negative stereotypes and disparaging remarks needs to be stronger. This emphasizes a need for improved epilepsy education and motivation for people with epilepsy as the foundation to improve public knowledge and behavior.”
-Miriam E. Tucker (@MiriamETucker on Twitter)