There isn’t a condition more misunderstood and stigmatised than epilepsy. In Ancient Babylon, the condition was thought to be the work of a Moon deity and subsequently epileptics underwent exorcisms to rid them of this influence. The Ancient Romans believed it was a curse sent from the Gods. The first step towards a modern understanding of the condition came in 460 BC, when the Greek philosopher Hippocrates decried the idea of a ‘sacred disease’ and hypothesised that, perhaps, epilepsy was caused by something within the brain rather than any divine control.
Despite huge advancements in the field of neuroscience since Hippocrates, people with epilepsy were still being institutionalised alongside the mentally ill as recently as the 19th Century. We now know more than ever about the neurological processes that cause seizures, but epilepsy still remains a condition shrouded in misunderstanding, falsehoods and fear.
As someone who has fought against epilepsy for over 12 years, I’ve encountered all manner of myths, fictions and stereotypes regarding my condition and what it means. As a result, I want to set the record straight – here are the top 7 mistakes people make when talking about epilepsy.
Myth #1: People with epilepsy are always affected by strobe lighting
It’s commonly thought that strobing or flashing lights are the sole cause of epileptic seizures, but this couldn’t be further from the truth. This myth surfaced, I presume, as a result of the constant warnings ahead of video games and news items involving flash photography, or perhaps from the horror stories that emerged following the broadcast of a certain episode of Pokémon.
In actual fact, only 10% of people with epilepsy are photosensitive (meaning they have an epileptic reaction to visual triggers). The other 90% – myself included – have no reaction to lights, flashes or strobes whatsoever.
Myth #2: All seizures involve shaking or a loss of consciousness
The image that conjures in the minds of most people upon hearing the word ‘epileptic’ is that of a person convulsing – that is, falling unconscious and shaking or writhing on the floor. The truth is incredibly different. Whilst convulsions are one form of seizure, there are over 40 different types of epileptic activity, ranging from phantom tastes and smells, visual disturbances, tingling sensations and confusion.
My own personal experience with epilepsy is almost entirely different from the stereotypical image. I experience seizures in the temporal lobe (the very bottom) of my brain. The temporal lobe control functions like memory, speech and hearing. This means that when I have a seizure, instead of convulsing, I experience an unfathomably strong feeling of déjà vu – as if I can predict everything occurring around me before it happens. I’m often asked what this feels like – at which point I refer to one of the most famous epileptics, Fyodor Dostoevsky, who described the moment before a seizure as follows:
“There seemed at moments a flash of light in his brain, and with extraordinary impetus all his vital forces suddenly began working at their highest tension. The sense of life, the consciousness of self, were multiplied ten times at these moments which passed like a flash of lightning. His mind and heart were flooded with extraordinary light… But these moments, these flashes, were only the prelude of that final second in which the fit began.” – F. Dostoevsky, The Idiot.
It really is, as Dostoevsky conveys, an alien, almost ethereal experience and extremely difficult to put into words. Either way, it doesn’t involve the stereotype of a seizure and I remain conscious for the duration.
Myth #3: You can swallow your tongue during a seizure
There’s a common piece of “advice” that states if you encounter someone convulsing, experiencing a ‘tonic-clonic’ seizure, you should put something in their mouth to stop them swallowing their tongue. This is, in fact, some of the worst advice I’ve heard.
It’s completely impossible to swallow your tongue during a seizure. It cannot happen. What’s more, if you were to try to put something in the person’s mouth whilst they’re convulsing, you’re putting them in danger of choking. So what’s the best course of action if you’re with someone who’s having an epileptic attack? The answer is very simple: make sure there are no immediate dangers in the area (items that may fall on them or cause them injury, hazardous spots like busy roads, or tight items of clothing such as ties). Make sure their head is safe and, if possible, cushioned. Other than that, just stay with them until they’ve finished convulsing. Once they’ve finished, place them on their side and talk with them until they’ve recovered. Any other interference in their seizure could cause them real harm.
Myth #4: If you are epileptic, you cannot drive a car
It’s often thought that due to the nature of the condition, people with epilepsy are unfit to drive. Whilst this is true for people experiencing regular seizures, this isn’t a blanket law and many people with epilepsy are legally entitled to drive.
The law varies based on type and frequency of seizures, but it’s generally true that if you experience 12 months without any epileptic activity, you will be able to drive. For further information regarding the exact specifications of the law when it comes to driving and epilepsy, please visit the Epilepsy Action website.
Myth #5: Epilepsy is a mental illness
“So, now that you’re sane again…”. This was how someone began a conversation with me after the conclusion of a recent period of seizures. Because the source of a seizure can be found in the brain, there’s a great deal of confusion over exactly how epilepsy should be defined and classified, with many people making the mistake of conflating the condition with mental illness.
Epilepsy is a physical disability. It is a disorder that affects the functioning of neurons within the brain, causing what is essentially an electrical short-circuit. It is not in anyway related to mental health, sanity, intelligence or emotional wellbeing. People with epilepsy lead normal lives as happy, healthy individuals who in most cases aren’t restricted by their disability.
Myth #6: Epilepsy is rare
Now this one is just plainly untrue. Over 60 million people worldwide have been diagnosed with some form of epilepsy. To bring that closer to home, it means that 87 people each day are diagnosed with the condition in the UK alone. Whatever the statistics, it’s certainly true that epilepsy is not the mysterious, elusive condition that it is often believed to be. Furthermore it can be developed at any point during one’s life – someone aged 65 is just as susceptible as someone aged 15.
The good news is that despite the sheer volume of people living with the condition, anti-epilepsy medication is more effective and readily available than ever before, with 70% of patients having the ability to cease all seizures with the right medication.
Myth #7: We know what causes epilepsy
Lack of water, lack of sleep, stress, emotional trauma, sugar, knocks to the head. These are just some of the factors I’ve believed – at various points in my life – may have been causing my epilepsy. Yet despite my theories, I’ve got no concrete evidence that any of those factors have any impact whatsoever (and even more than this, many of these factors have since been proven to be completely unrelated to my seizures). The truth is that, 12 years down the line since having my first seizure, I’m no closer to discovering the root cause of my condition.
And I’m not alone. Causes cannot be found in more than half of epilepsy cases, giving the majority of people little idea of just what instigated the condition. Causes can range from childhood illness, tumours, low oxygen during birth and even genetic conditions, but for most people it’s just guesswork. This is why research into epilepsy is so vital.
Epilepsy carries the weight of years of stigmatisation. However, we now live in a modern, scientific age in which we possess the research and the power to change the perception of the condition. By separating fact from fiction, we can gain a greater understanding of epilepsy and make it easier for those battling the condition on a daily basis.