A few years ago, I developed a seizure disorder known as migralepsy. One of the first things I lost was the ability to attend concerts due to flashing stage lighting. Soon after, social media GIFs started becoming very popular. The more popular, the more ‘fancy’ they became with glittering flashing and moving graphic aspects. I repeatedly post reminder social media posts letting my friends know not to send me GIFs because the flashing moving colors set off my seizure activity. I am significantly affected by Birthdays and Christmas posts as I read them most often, and when posters post more ‘fun’ flashy posts. When I have a seizure, I lose time, thoughts, and memories, which are painful.
Trends
I am now seeing a trend where chat leaders ask their participants to share their favorite GIF or one that says how they are feeling or reminds them of the topic of the chat.
If I could, I would make tweet chats (and events in general) related to health more open to people with seizure disorders and migraines; this would be the most significant request. I love participating in chats but have to be very careful about when others are participating and throw in a GIF, prompted or not so that I can at least finish the chat without having a seizure or starting a migraine.
As a person who participates in many Twitter and Facebook chats, I would ask chat leaders to remind participants not to use flashing gifs, so they are not as dangerous. I have had to stop participating in some chats, which is sad because I like to contribute to my health communities and learn from others. Most event/chat organizers had never thought of GIFs and their impact on epilepsy and chronic migraine patients. Maybe now can be the time.
Types of Seizures
There are many types of seizures; atonic seizure, absence seizure, focal seizure, epileptic spasms, epilepticus, psychogenic non-epileptic seizure, frontal lobe epilepsy, childhood absence epilepsy, and abdominal epilepsy, to name a few. For many of these types, some specific types of light or flickering patterns can cause a seizure to begin. The speed or flicker (including fluorescent lighting) can cause a seizure. The flickering or “high frequency” light sources are often triggering for those with photosensitive epilepsy.
As an epileptic, I must also pay attention to light intensity, brightness, color wavelengths, distance from the flashing, and visual patterns. I have special photosensitive epilepsy glasses that I wear if I know I will be exposed to these types of flickering lights, but they are not something I wear all the time as they are dark lenses and difficult to see out of for regular life activity.
They don’t always stop the seizure, but they can help me lessen the symptoms after a seizure, especially double vision. When I am participating in an online chat, it is very difficult to know if someone will through up a GIF that will set off my seizures or even a migraine. Which, for me, can lead to more seizure activity.
Effects of Seizures
Although very few people will ever have to suffer the terrible effects that strobes and flashing lights of a GIF will have on those of us diagnosed with photosensitive epilepsy, migralepsy, or migraines. I would love for people to understand what we go through, how much it affects our lives, and the online and in-person activities we want to participate in.
After viewing a strobing GIF sent by a Twitter troll, I suffered a debilitating photosensitive seizure that kept me offline for days with vomiting, blurry vision, dizziness, and feeling like I had an electrical storm in my brain.
The dangers of these flashing lights are so real. There have been attacks specifically on epileptics using GIFs. For instance, in 2008, an Epilepsy Foundation temporarily shut down its website after hackers plastered the Foundation’s forums with flashing images.
Since many triggers for these seizures have been identified, we can avoid them. But something simple like stopping flashing GIFs in a health chat can go even further in allowing a whole group of people to participate without being on edge and waiting and worrying about the next post in the chat thread and what it might do to us.
About the Author:
Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy, and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.
Other Info:
The information in this column should not be considered as professional medical advice, diagnosis, or treatment. It is for informational purposes only and represents the author’s opinions alone.
