Sharing The Pain: Migraine Sufferers Turn To Twitter To Voice Their Agony
April Flowers for redOrbit.com – Your Universe Online
It feels as if an ice pick is being shoved into your eye, you can’t keep food down, and turning on a lights make the evil genius with the ice pick much more energetic.
The findings, published in the Journal of Medical Internet Research, show people are sharing their agony with others, 140 characters at a time. The research team suggests that this indicates a trend toward the cathartic sharing of physical pain, as well as emotional pain on social media.
“As technology and language evolve, so does the way we share our suffering,” said principal investigator Alexandre DaSilva, assistant professor and director of the Headache and Orofacial Pain Effort at University of Michigan School of Dentistry. “It’s the first known study to show the instant and broad impact of migraine attacks on modern patients’ lives by decoding manually each one of their individual attack-related tweets.”
DiSilva and his research fellows recruited 50 students and residents to categorize 21,741 tweets. After eliminating advertising, metaphor and nonrelated migraine tweets — which has never been done in previous studies — they then analyzed the meaning of each individual migraine related tweet.
“We sought to evaluate the instant expression of actual self-reported migraine attacks in social media,” DaSilva said.
The team was able to discern unique information about the people who suffer from migraines, as well as what, how, where and when they use social media to describe their pain. DiSilva said the new results showed significant overlap with other traditional epidemiologic migraine studies.
During data collection, the team examined the most descriptors for migraines, including profanities, tweet times and locations, and impact on productivity and mood. They found that only 65 percent of the tweets examined were from actual migraine sufferers posting in real-time. The rest were comprised of advertising, general discussion, retweets, etc. DiSilva said that this suggests not everything in social media is meaningful to the patient.
The study findings include:
• Of the total number of migraine tweets, females account for 74 percent and males 17 percent.
• Globally, the peak of migraine tweets occurred Mondays at 14:00 GMT, or 10 a.m Eastern Daylight Saving Time.
• Europe accounted for 20 percent of the total tweets, while the US accounted for 58 percent.
• Migraine tweets peaked in the US at 9am and 8pm on weekdays. On weekends, the morning peaks were later.
• Mood was impacted immediately in approximately 44 percent of migraine tweets.
• The most common migraine descriptors were “worst” at almost 15 percent and “massive” at around 8 percent.
As a public health issue, migraines are known to harm moods, productivity and overall quality of life for those who suffer from them. For example, in the Western world an estimated 12 percent suffer from migraines. Of those, 75 percent report reduced functionality, and 30 percent require bed rest to recover.