Why Did Flashing Gifs Cause Such Distress On Twitter?
Epilepsy: What is it? Flashing lights and falling to the floor? In May 2020 the Epilepsy Society and their supporters were targeted on Twitter with flashing gifs designed to provoke seizures in epileptic people in the ‘worst ever bullying attack on Twitter’ aimed at the Society. I had a chat with my friend’s sister to find out more about what having epilepsy is really like.
“Epilepsy is not just one condition, but a group of many different 'epilepsies' with one thing in common: a tendency to have seizures that start in the brain. Epilepsy is usually only diagnosed after a person has had more than one seizure. Not all seizures are due to epilepsy. Other conditions that can look like epilepsy include fainting, or very low blood sugar in some people being treated for diabetes. Anyone can develop epilepsy, and at any time of life. It happens in people of all ages, races and social classes. Epilepsy is most commonly diagnosed in children and in people over 65. There are over half a million people with epilepsy in the UK, so around 1 in 100 people.” – The Epilepsy Society.
Charlotte is twenty years old and, after being hit on the head at a party with a rock, she was diagnosed with epilepsy at age seven.
“I have spasms; absences seizures; seizures in my sleep; and tonic clonic seizures. These can be induced by stress, anxiety, hunger, lack of sleep, alcohol and my menstrual cycle. A stand out experience for me was when I told my “friend” about my diagnoses in junior school. She disassociated herself with me and started a rumour that my epilepsy gave me a ‘black brain’. From that day no one wanted anything to do with me as I was different. This is why I call my absence seizure blackouts. People get freaked out when I say the word seizure.” Epilepsy affects not only the epileptic person but their family and loved ones too.
For Charlotte, if she has a burst or cluster of blackouts in a row it can turn into a tonic clonic seizure which is very scary. “I had my first tonic clonic whilst crossing a road with my family on New Year’s Eve. I remember floating above my body and everything was grey and black, I felt sick, sore, and super confused. From then I would have a seizure every 6 months. There was a period of time where I was tonic clonic seizure free until recently in May this year. This time it was a very aggressive tonic clonic seizure and I nearly died from it. I was choking on my saliva and my body was shaking a lot more aggressively. It caused me to cut my leg with my nails and it lasted about 4-5 minutes. The doctor said “If your seizure lasted any longer you could have been brain damaged or gone in a comatose state and died as a result.””
Daily life
“Growing up with epilepsy I’ve learned to be a bit more careful in my day to day life. My absence seizures look similar to someone daydreaming as I zone out for 5-10 seconds. During this time in the past I’ve been hit by cars, burned myself, and miss parts of conversations. Someone could say “How the weather been today Charlotte” and I’ll hear “How… day… Charlotte”. This leads to a lot of confusion as I have to piece together information and I find it embarrassing to keep asking the same question. The daily tasks of crossing a road or handling hot objects become a little more stressful as in those few seconds I stop moving and I am super confused which makes me vulnerable.
Both my spelling and reading were affected growing up as I was having 300-500 absence seizures a day which meant life was ‘jumping’ and not making much sense. To this day my confidence has been knocked and I dread public speaking.
Although my seizures can get quite severe, I never let it stop me doing normal things and my friends know how to help me when I have absence seizures (like repeating what they’re saying and asking if I want a snack to boost my sugar levels). I laugh about my seizures with my loved ones as humour makes it easier and I joke about how I love Taylor Swift as her song Shake It Off is what I say I’m doing after having a seizure or a spasm.
Discrimination
Charlotte has unfortunately experienced a lot of discrimination. She was not allowed on school trips due to the concern that she may have a seizure and she often wasn’t invited to parties: “Oh there were lights so we didn’t want you to have a fit, that’s why we didn’t invite you as no one wants to deal with that”.
There was also discrimination present within educational settings with the following incidents which took place between 2018 and 2020.
“The worst experience I’ve ever had and always sticks in my memory is when one my old lecturers made my class laugh at me when I had an absence seizure. He said “you’re not epileptic you’re just a daydreamer who zones out and doesn’t pay attention while trying to find a reason to eat” (Charlotte eats to boost her sugar levels after she blackouts). “This lecturer took my food off of me in class threw it in the bin.”
Whilst Charlotte raised the event with leadership team who spoke to the staff member, he didn’t take any notice and continued to discriminate her for being different.
“I can’t believe in modern society people still discriminate against a disability; if people take the time to look into epilepsy, or ask me what my form of epilepsy is like, I’m more than happy to explain”
Did you have personal experience with the tweet?
“I came across a video on a meme page that had the thumbnail of a dog. It was fake and instead of a dog, I was blinded by sudden array of flashing lights. I felt sick and light headed. I later saw the post from Epilepsy Society and Epilepsy Awareness about trolls targeting people with epilepsy for a laugh.
The event made me so angry and I really didn’t understand what these trolls got out of it. Seizures can kill. It is sad that we live in a world where people see seizures as amusement when in fact some people can bite through their tongues, cut themselves or die, what’s funny about that? When coming around from a seizure your muscles can hurt for weeks, you feel confused, disorientated, weak and sick and I feel really depressed after. It affects your mental health as much as your physical health. Why would people want to cause that?”
I’d love to see a law in place for triggering dangerous videos to be banned to make the internet a safer place. It’s scary coming around from a tonic clonic seizure unsure of who and where you are. People think you’re drunk and in some cases can take advantage of the situation as you’re vulnerable and steal from you (this happened to someone I know). The idea that someone could send me a video and cause a tonic clonic seizure that I could die from, is a very real and scary idea.
I have a really close family who help me and have accompanied me to hospital through it all. If we educate people about epilepsy and teach them about how wrong this video is, we can make the internet a safer place for people living with epilepsy.”
What would you want people to know about epilepsy?
“People aren’t aware that there are over one hundred different types of epilepsy and that flashing lights don’t always cause seizures as only 10% are photosensitive. People and teachers assume when I’m having an absence seizure that I’m daydreaming/not paying attention or being rude. It upsets and frustrates me that people assume that, because I’m epileptic, I’ll just fall on the floor and shake when a light is flashed. I spend every day piercing together missed bits of information and worry whether ‘this is the day I’ll have a seizure in front of a car again?’
It can be really stressful and confusing to piece together lost information and I might not be able to do the ‘normal’ things like drive or go to theme parks. Just before having a seizure I’ll have an aura which is when my brain lets me know to go to a safe place before I have a fit and I get the feeling of being pulled and thrown around which is why I don’t like roller-coasters or when someone drives fast.
I would love people to ask questions about it and I wouldn’t be offended if you ask “what happens when you blackout?” rather than assume I’m going to drop to the floor all the time. Rather than assume I’m daydreaming or not paying attention wait for me and then repeat what you just said as I most likely will be having an absence seizure.
Epilepsy isn’t just flashing lights and collapsing on the floor and, whilst it is something that can’t be cured, some people can grow out of it with age. However, others are stuck with it and have to take medication with numerous side effects for many years.”
Written by Megan Siarey
Hi I am Megan! As English Literature graduate and mental health advocate who addresses stigmas and disability discrimination I love writing about people and giving them that public voice to tell their stories.