When you have epilepsy, using social media can leave you particularly vulnerable. Patty Shafer, a clinical nurse specialist and senior director for health information and resources at the Epilepsy Foundation, weighs in on how to stay connected while also staying safe.
DO join an online support group. The Epilepsy Foundation offers various chat rooms, such as EpiTalk, where patients can share experiences, and Corner Booth, to “kick back” with friends.
DON’T disclose too much. Less is better, says Shafer. Some info, such as where you get treatment or who your doctors are, could compromise your safety. And being too open might affect your chances of getting certain jobs.
DON’T click on links from strangers. In 2016, a journalist suffered from a debilitating seizure after viewing a flashing GIF. The animated image was sent by a social media troll who knew the man had epilepsy.
DO make an action plan. If you regularly interact online with specific friends, let them know what to do if you stop making sense or go silent for a long period of time—in case you need help.
Originally printed in EpilepsyAdvocate, Spring 2018