Purple Day: Epilepsy myths and misconceptions from flashing lights to swallowed tongues belittle the experiences of one in 100 Scots - Joshua King
There’s no social distancing required and you won’t know us by our masks, but epilepsy has been a big part of life for thousands of Scots during the pandemic.
Every so often my brain would go on the fritz. I’d black out or feel woozy or lose all concentration. I have epilepsy.
Symptoms and sufferers
Yes, epilepsy is strange. And it can be frightening too for sufferer and witness.
Symptoms include blackouts, confusion, loss of bladder control and even bouts of aggression and violence.
Simply put, a seizure is what happens when a person’s brain short circuits.
Somewhere among the billions of neurons passing information to one another all the time, something gets disrupted. How a seizure manifests depends on where that faulty wiring is in the brain.
In theory, anyone can have seizures. You may have had one in your life and just not know it.
Sometimes all our brains just don’t work quite right.
But when it’s happening regularly, when it’s not just a random misfire but a whole badly-wired switchboard, then it can be a real problem. Then you have epilepsy.
Myths and misconceptions
There are a lot of myths and misconceptions and plenty of stigma to go around too so let’s start with some basics.
In the UK, around 600,000 people have epilepsy, roughly one per cent. It doesn’t discriminate by gender, race or age.
On average, we’ll die eight years earlier than those without. Depression is common and, alarmingly, we’re twice as likely to die by suicide.
You’ve probably heard that flashing lights can be a problem.
That’s true, but only for a small percentage of us. In fact, only three per cent of people with epilepsy have photosensitive seizures and I’m not among them.
Other triggers include stress, alcohol, dehydration, lack of sleep, anxiety and illness.
The bad news is that there’s no cure. But, with a strict regimen of medication, seizures can be controlled. Mine currently are.
What can you do to help?
Lifestyle changes are important too. If you’re an employer, consider reasonable adjustments you can make: regular hours, regular breaks, time off for treatment, consideration of technology for people who are photosensitive.
And first aid helps. Despite what you may have heard, I beg you not to shove a spoon or - god forbid - your fingers in my mouth if I have a seizure. I’m not going to swallow my tongue, but you might break my teeth and I might bite you or choke.
Here’s what you should do: move nearby objects away, pop something soft under my head, stop people crowding around and, if possible, time the seizure.
You won’t need to call an ambulance unless if goes on longer than five minutes or if I’m choking or hurt. You should call for help if it is a person’s first seizure.
Compassion and awareness
The last 12 months have taught us a lot, including the immense capacity Scots have to appreciate healthcare.
We’ve learned about R numbers and social distancing, we’ve worn masks and washed our hands.
So here I am asking you to consider changing your behaviour just that little bit more.
There’s no vaccine for epilepsy and I’m not asking you to wear a mask. Just to be aware.
It makes all the difference.