MYTH-BUSTING EPILEPSY

Epilepsy is not a rare disability. It is the

second most common neurological disorder behind dementia, and five million people are diagnosed with it every year, worldwide. But, for a condition that exists in every walk of life, it is massively understood. I am here to challenge misconceptions, and bust some myths on epilepsy:

Epilepsy equals having fits: The media tends to only show tonic-clonic, or convulsive seizures, but there are in fact over forty different types of seizure. Absence seizures look like a person is blankly staring into space; myoclonic seizures are muscle jerks and spasms; focal aware seizures can manifest themselves as déjà vu - the sensation of a wave going over your head - or hallucinations, among many other things. Some are generalised, meaning it involves the entire brain, whilst others are focal, and therefore occur in a smaller section of the brain. All are equally serious and valid, although can often be difficult to diagnose. Due to this false media portrayal, many with epilepsy can be having seizures for years, without even realising that what they’re experiencing is a seizure.

It’s ‘just a seizure’: Whilst having seizures is what epilepsy stands for by definition, it is important not to forget the consequent effect they have on the brain. Seizure recovery can take minutes; hours, or even days, depending on the person. It can include memory loss; extreme fatigue, or an inability to concentrate. It also isn’t uncommon for people with epilepsy to injure themselves - sometimes quite severely - during a seizure, which adds to the time needed to recover, and can often be extremely anxiety-inducing.

Medication fixes everything: Unfortunately, epilepsy cannot be cured. For many, antiepileptic drugs - or AEDs - are successful in stopping seizures from happening, or at least considerably reducing them. It can take years to find the right drug for an individual, and unfortunately some types of epilepsy are drug resistant. But just because medication might cause the seizures to stop, it doesn’t mean epilepsy is gone. Many AEDs come with a whole host of side effects, which can be just as debilitating as the seizures themselves. Fatigue; nausea, and tremors, are just some of the dozens of things experienced. Finding a treatment plan, which limits both seizures and side effects, is therefore the ultimate goal. Flashing lights are triggering: Whilst strobe effects and flashing images can trigger some with epilepsy, it only accounts for approximately three percent of all sufferers. More common triggers include stress; sleep-deprivation, and alcohol, but even laughing can cause some to have seizures. It is a very complex disability, and it often takes many years to nail down what a person’s triggers are; then trying to avoid these triggers, is another matter entirely.

They can’t… “Oh you can’t drive then?” “You must not be able to work.” “You won’t ever live alone.” Whilst all of these statements can be true for some, most with epilepsy can lead relatively normal lives. For example, in the UK, you can drive after being seizure-free for over a year - with a little consideration regarding safety, there’s really nothing a person with epilepsy can’t do! Epilepsy is a difficult beast to live with. It is massively unpredictable, and it is difficult to not be constantly thinking of when, and where, the next seizure will happen, even if the seizures are under control. But at the end of the day, it is just a technical glitch in the brain, and once understood, it doesn’t have to be something to be frightened of.

For more information about the condition, including seizure first aid, please visit https://epilepsysociety.org.uk/

WORDS BY HANNAH GRIFFITHS IMAGE BY EESHAA KARDILE

The Fall of the Sunflower Lanyard

How a Great Initiative Fell Victim to the Pandemic

WORDS BY MARTHA LUKE IMAGE BY WIRESTOCK via FREEPIK

The sighting of a sunflower lanyard symbolises

invisible illness or disabilities, which are officially recognised throughout the country, and also around the world. Prior to the Covid-19 pandemic, it lacked force except for within some service and travel industries.

Wearing the sunflower lanyard was therefore not of much use for me personally, except when occasionally taking a busy train. In this situation, it allowed me to legitimately request a seat before other passengers and provided the security that support would be given by staff, if conflict was to arise between myself and another passenger.

However, for other sunflower-lanyard wearers, the validation of authority the lanyard gave them to be able to confidently say “I am someone who needs to use the disabled toilet” or “I do not need to give up my priority seat on the bus for you” was invaluable. It allowed people to go about their day-to-day life with the necessary accommodations in place, and the knowledge that they would be supported in case an all-too-familiar Karen decided to object. Furthermore, the visibility of the sunflower lanyard - once the general public understood what it meant - was important in tackling the stigma of such invisible disabilities, which are more common than you would think! It played an important role in demonstrating that not all disabled people (or otherwise people with chronic or long-term illness and health issues) look a certain way. We are not all in wheelchairs; a lot of us are completely independent, with the degree of disability fluctuating daily: on Monday someone could be capable of walking, but perhaps by Thursday, they need the support of a cane. There is a multitude of unrealised complexities, which the sunflower lanyard successfully brought into view, which was great.

Not so great though, has been the use of the lanyard throughout the Covid-19 pandemic. Unfortunately, it has come to symbolise mask-exemption, at least in Britain. For those whose hidden disabilities genuinely exempted them from mask wearing (and who probably already had the lanyard), great. But those who realised they could order themselves a lanyard online, or get one from a supermarket for free? Not so great. As a result of no establishment;

organisation, or even individual legally able to ask another to provide evidence of having a genuine mask exemption, the availability of the lanyards was exploited by antimaskers. This has hurt not only people with genuine maskexemptions, but those who wore it for other reasons too. The general public have begun to lump persons who wear the lanyard for all the above reasons together: those with genuine mask-exemptions; hidden disabilities, alongside anti-maskers and lanyard-appropriators.

Suddenly people with a lanyard wearing a mask, were questioned in their efforts to keep themselves and others safe: “you know you don’t have to wear that if you have the lanyard, right?”. People wearing a lanyard and no mask were not questioned, and generally, things fell apart for those with hidden disabilities. A majority of the public only learned about the lanyard during the pandemic, with most solely connecting it to mask-exemptions. The force of the symbolic sunflower was lost; people didn’t realise that it was there to support those who needed assistance, and questions were raised yet again. Even members of staff who ought to have been taught the correct use of the lanyard were clueless, having been taken on as support during the pandemic.

Some smaller initiatives - both online and in-person, like tweets or posters - tried to correct people’s perception of the lanyard. But of course, they could only do this to a certain extent. A lot of people still have an incorrect understanding, which is arguably worse than no understanding. Although, with anti-maskers having given up trying to justify their actions, at least this is one epidemic that has come to an end. But the previous damage remains. There is great irony is that the pandemic has created persons who need an initiative, damaged by the pandemic. Many newly chronically ill people, suffering from long-Covid, would actually have benefitted greatly from the original purpose of the lanyard. They too have an invisible disability, seeking support but feeling too scared to ask for it, or facing discrimination at the hands of those who do not understand the true meaning of the sunflower lanyard.

My hope for the future, is that the purpose and reasoning behind such a scheme can become more widespread, so that others can be educated. Nobody should be challenged just because another can’t necessarily see what’s wrong. Support should be there safely and securely, for those who need it.