Last week Lizzie Huxley-Jones stood stock still in her kitchen, unable to remember how to make a sandwich.
“It’s like you’ve lost the instructions,” the 28-year-old tells me. “It’s like you go to do a task and the file is missing for how you complete it… and you’re like ‘Oh God, I don’t even remember how I do this’,” she says – referring to making a sandwich or a cup of tea. “It’s like a complete and utter sudden loss of independence.”
Lizzie is discussing the after-effects of having a seizure. A book blogger who lives in London, she is autistic and suffers from non-epileptic seizures (NES), also known as dissociative seizures. After her most recent seizure, she experienced eleven days of after-effects, including twitches, a loss of mobility, and aphasia (difficulty recalling words). Though Lizzie felt its repercussions for over a week, the seizure itself was just a few minutes long – and was caused by something that lasted only a second.
A brightly-coloured flashing gif of cats.
“It sounds pretty cutesy,” admits Lizzie, who saw the gif on the social network Twitter, “but it was very fast so what happened is I looked at it and then almost immediately went into a seizure. Luckily I was on my couch already but if I’d been elsewhere I could have just dropped.” No one was around to help her, but her dog – Nerys – comforted Lizzie by falling asleep on her lap.
Lizzie and Nerys
It is commonly acknowledged that certain gifs can cause seizures for people with photosensitive epilepsy. Just three per cent of epileptics suffer with photosensitivity – meaning flashing or flickering lights induce their seizures. Triggers include everything from ceiling fans, interactive whiteboards, and Christmas tree lights as well as, of course, gifs.
“Any flashing image between 5-25 Hertz (flashes per second) has the potential to trigger a seizure in someone who is photosensitive, although this is very rare,” says Professor Ley Sander, a medical director at the Epilepsy Society and professor of neurology at University College London. “People who are photosensitive should be very cautious when online as the internet and social media are full of flashing images.”
The account that tweeted the cat gif meant no harm, and went on to delete it after Lizzie and her friends asked for its removal. Lizzie describes the recent seizure as like a “sparking” in her brain and says that afterwards the pain was “like you’ve been hit by a lorry specifically to your face.” Though these consequences were accidental, many seizure-inducing gifs are deliberately designed to damage.
In March, a man was charged with aggravated assault after sending a flashing tweet to epileptic journalist Kurt Eichenwald which read: “YOU DESERVE A SEIZURE FOR YOUR POSTS.” Back in 2008, the charity Epilepsy Foundation was forced to shut down its message boards after internet users flooded them with flashing gifs. Lizzie says that on Twitter, people search for those who mention seizures in their tweets or bios, and deliberately send them strobing gifs.
@jew_goldstein This is his wife, you caused a seizure. I have your information and have called the police to report the assault.
— Kurt Eichenwald (@kurteichenwald) December 16, 2016
Yet many online also refuse to believe sufferers like Eichenwald, because photosensitivity is rare and gifs have to flash at a certain rate to be a trigger. For Lizzie, this stigma is exacerbated by the fact that her seizures – which are non-epileptic (dissociative) – were once called “pseudo-seizures” by medical professionals.
“Dissociative seizures happen for psychological reasons rather than physical ones,” says Chantal Spittles of Epilepsy Action. While epileptic seizures occur because of abnormal electrical activity in the brain, NES are triggered by thoughts and feelings.
“It can be really tough to be told you have dissociative seizures. This is especially true if you have spent years thinking you have epilepsy. However, dissociative seizures are a real medical condition. And the dissociative seizures you experience can be just as disruptive or unsettling as epileptic seizures,” explains Spittles.
Professor Sander says it is “very hard to say” whether gifs can trigger non-epileptic seizures but for Lizzie, this is simply her reality. She believes that the stigma and lack of funding around NES mean that not enough is known about photosensitivity rates in NES sufferers. Anecdotally, she claims many with NES are triggered by flashing bike lights, like herself.
“People don’t believe or they don’t think it’s serious at all, it’s almost like they think you’ve got a headache,” she says. “[It] starts to play on your mind that no one thinks this is real and everyone thinks you must be a liar.”
Regardless of the stigma, Lizzie – who lost a friend to SUDEP (sudden death in epilepsy) earlier this year – wants to raise awareness of the damage gifs can cause for epileptic and non-epileptic seizure sufferers, as well as people with autism (like herself) and photosensitive migraines. “It’s sad that people don’t think about it but I mean, I grew up with an epileptic sibling and an epileptic uncle, so my whole life has been spent thinking about this,” she says.
So which gifs are best avoided? Lizzie says to think before sharing any that change colour or change contrast (from light to dark) very quickly, as well as gifs with psychedelic colours and patterns. Spittles says most people with photosensitive epilepsy are sensitive to 16-25 Hertz, though some are sensitive to rates as low as 3 Hertz or as high as 60 Hertz.
Many might think the onus is on Lizzie and the journalist Eichenwald to change their computer settings so gifs don’t auto-play (Epilepsy Action has guidance on how to do this). Nonetheless, Lizzie believes it is imperative for people to think before they share a gif, and Epilepsy Action is now working with Twitter to improve reporting procedures should any targeted attacks occur in the future. In the meantime, Lizzie simply asks for a safer, less ableist internet experience. “We have a responsibility in our communication online to make it as accessible as possible,” she says.