Ben James is back with his column, in which he talks all thing tech and gaming in the world of rare disease!
This time Ben is discussing the struggle that can face gamers who suffer with photosensitive epilepsy.
Joe is an avid gamer. He loves FIFA and Smash Bros, but he will play just about anything as long as he can hang out with friends online. During a hectic game of Fortnite, Joe became light-headed and his limbs started to feel heavy before he fell to the ground with convulsions. While he had initially shrugged it off as tiredness, Joe was experiencing the start of an epileptic seizure triggered by the game.
Eventually, Joe was diagnosed with photosensitive epilepsy.
This is where someone has seizures that are triggered by flashing or flickering lights, or patterns. An epileptic seizure happens when a burst of electrical activity disrupts normal function in the brain, causing messages to get mixed up. It’s the same as if we overload a computer with too much information – it eventually shuts down.
Joe experienced what is known as a tonic-clonic seizure, which can leave you feeling exhausted and even with no memory of events during the seizure period. This kind of seizure is the one that most people think of when they hear the term epilepsy, but there are a number of different types, and the effect depends on where in the brain the electrical burst is occurring. Importantly, it is not always easy to tell when someone is having a seizure.
“It really scared me, to be honest,” Joe recounted. “I hadn’t even realised I was epileptic. I’ve had to be so careful since then.”
Joe’s experience really resonates with me. I also suffer from epilepsy, and it can be unpleasant and sometimes scary– not only for me, but also for my family and friends. Although I don’t suffer from photosensitivity, I have to make sure I don’t get too worked up while playing games, and I have to make sure I get enough sleep, so I can’t stay up all night gaming (as if I would! *cough* *cough*). If I don’t, I risk a seizure.
The other option would be for me to stop playing games entirely…
Despite being one of the most common and serious neurological conditions, affecting about 65 million people worldwide, epilepsy is a health condition I feel that is not discussed enough. In the UK, about 1% of people (around 600,000 people) live with epilepsy. While only 3% of these have photosensitive epilepsy, it is more common in children and young adults, and is especially problematic in the gaming world.
Many games have flashing lights and contrasting dark and light patterns, making those who suffer from photosensitive epilepsy more likely to have a seizure. The first case of seizures being associated with games was recorded in 1981, and game developers, like other media companies, have to follow strict rules and guidelines to limit the effect on epilepsy symptoms. There has been support for this among some politicians in the UK, who have campaigned for greater awareness. The need for action has also been agreed upon by the TIGA (The Independent Game Developers Association). However, despite this agreement, there have been few practical steps taken to keep gamers safe.
Some game developers are slowly trying to design games that do not trigger epilepsy, as well as offering a token warning to players about the steps they should take to stay safe. For instance, CD Project Red are looking at ways to turn off strobing effects in response to complaints about their most recent game, Cyberpunk 2077. Nintendo and Sony warn their users that before playing they should seek medical advice if they have underlying health conditions or suffer with some form of epilepsy. Ubisoft has even published a booklet to help smaller game developers address photosensitive epilepsy, paving the way for others to adopt better practices.
This is a great start, but better or more creative solutions would certainly be welcome!
You can only imagine how frustrating gaming can be for individuals who suffer from epilepsy, as the responsibility still lies on players to keep themselves safe. Such precautions include tweaking brightness, gamma, and contrast settings, or even wearing an eyepatch over one eye.
Government Warning: eyepatches should be mandatory when playing Sea of Thieves!
Until companies take more responsibility, gamers have to be careful. Despite having photosensitive epilepsy, Joe still plays games regularly. He says, “I check for warnings whenever I get a new game, but I always play in a bright room now anyway. I sit as far as I can from the screen and I take plenty of breaks. They say being tired, stressed or excited can set you off, so I try not to let things get to me!”
I’m no expert, but I think Joe’s right. I’m not as zen as he is, but next time a game makes me want to throw my controller at the TV, I’m going to go out for a walk (and throw my controller in the park, instead).
Written by Ben James, as part of his regular RARE Youth Tech column.
To get involved with the RARE Youth Revolution, you can email our youth coordinator James Brooks at firstname.lastname@example.org