Imagine that you are one of the 80 people diagnosed with epilepsy every day in the UK.
You have recently had your first few seizures and keep finding yourself in unexplained places, or collapsing in public, or having sudden uncontrollable jerks of the limbs.
You’re likely to be scared, upset, and confused. Would you take it lightly if you heard someone describe the way they dance as like they were having ‘a seizure’?
Some will take no offence – they’ll take the comments as a joke and move forward safe in the knowledge that This Morning presenter Cat Deeley meant no harm when she used the term to refer to her dancing on Monday’s episode of the show.
I personally have always used humour as a defence mechanism, and have often made light of my epilepsy, which I was diagnosed with way back in 1996. It makes the condition seem a little less scary for me.
But would I do the same about someone else’s condition? No. That would be disrespectful, rude and hurtful, and as someone who has been in the public eye for so long, it should have been obvious to Deeley that her comment would upset some.
Many in the epilepsy community were upset and took to social media to express their hurt and outrage. One X user posted on the social media site that ‘it was a stupid thing to say and then snigger at’; another that Deeley’s comment showed ‘a deep ignorance towards the condition and is not remotely funny’.
I lost my cousin due to an epileptic seizure, so I understand why it’s not a laughing matter.
For many, the problem is that epilepsy already has a negative perception. Stigma, misinformation and misunderstanding of the condition are rife and comments like Deeley’s, delivered on a national platform, normalise this kind of casual attitude to a serious medical condition.
This is far from the first-time epilepsy has been referenced in this manner. For instance, in the first series of Netflix show Ginny & Georgia, one of the characters explains away an awkward moment saying that she was ‘probably just drunk, or on acid, or having a seizure or something’.
To really understand the struggles experienced by people with epilepsy, we need to look beyond the seizures and understand what life is really like with this condition.
As the Learning and Training Lead for national charity Epilepsy Action, my role is to train companies, community groups and organisations about epilepsy. I discuss issues that span a range of different aspects of living with epilepsy, far beyond seizures.
Epilepsy affects everyone differently: some people have their seizures under control, and the disruption is not as massive. For others, it’s significantly more challenging.
According to Epilepsy Action, only 42% of working age people with epilepsy are in employment – that’s roughly 30% lower compared to the UK population as a whole.
Those people with epilepsy who are in employment are paid, on average, 11.8% less than their peers, according to the research carried out by the Trade Union Congress (TUC).
Epilepsy Action
You can find out more about what to do when someone has a seizure here
The mental health impact is also huge – 87% of people with epilepsy say their condition has impacted their mental wellbeing in some way. People with epilepsy are more likely to live with depression than people who do not have it.
I should, of course, mention that for many (70%), seizure freedom is possible with the correct diagnosis and treatment. But even treatment often comes with side effects, so even those who don’t have seizures are still living with the impact of their diagnosis: fatigue, memory loss, cognitive impairment, and altered mood are all common side effects.
How many types of seizure are you familiar with? How many could you name? If you said ‘one’, I’m not surprised. It’s a misconception we’re often faced with. The truth is there are around 40 different types of seizure, which adds to the complexity of the condition.
And for those living with uncontrolled seizures, life can be even more challenging. Seizures lead to around 1,000 deaths in the UK each year – an added concern for people living with epilepsy. Comments like Deeley’s can be triggering, bringing back painful memories.
Any ‘joke’ about a medical condition is always likely to cause upset to some – and that’s not funny.
While Deeley has apologised, it’s been less than three months since she interviewed Dr. Zoe Williams about the need for awareness about epilepsy.
Her comment highlights that more conversations are desperately needed to change the way the public see and speak about epilepsy. Maybe if she spent some time with people affected by seizures, discussing their experiences, she may understand better.
If you are still of the belief that it’s OK to laugh at jokes like Deeley’s, that is your opinion and I won’t change your mind.
The question of when a joke becomes offensive is often debated, especially by those known for their on-the-nose humour. But if you’re not part of the solution, you’re part of the problem.
I just hope that if you have a medical diagnosis in the future, people are more sympathetic and understanding for you.
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