Epilepsy: Natasha Kosky’s personal perspective on the ‘sacred disease’

This year, we hear from Moorhouse Consultant, Natasha Kosky, on her experience of life and work as a person with epilepsy. Diagnosed at 12 years-old, she describes the impact epilepsy has had on her, and educates us on how we can better support those affected by the condition.

My diagnosis

I found out I had photosensitive epilepsy when I was 12 years-old. People often think that you’ll be upset to get a diagnosis, but it was a relief to be able to put the pieces together. And, as a 12-year-old, it was only about the fifth most important thing on my mind at that point.

I remember playing the Mega Drive with my friend (for those who remember the 1990s video games!), when I suddenly couldn’t work out how to play it. Then everything sounded foggy, my left arm started bending backwards and I fell back, falling unconscious. 25 years later, I still have a perfectly clear image of what I saw on the screen, and what I saw when I was falling. Possibly because I had lost all other sensations. I woke up with a TV-show style image of five people peering down at me from above – and that’s when the testing started.

Growing up with epilepsy

I was incredibly lucky to grow up in an inclusive environment, where my epilepsy was not a big issue from a social perspective. I was surrounded by supportive friends and family, and never felt it was a taboo subject. The worst part (as a teenager!) was the embarrassment of possibly having a seizure in public, and I was mortified by side effects of my medication, including weight gain and psoriasis. During university, it got more complicated with the social focus on clubbing and drinking, both of which I couldn’t do. But even with that, I had good friends who would sit outside with me or turn our lounge into a quasi-club. Many people with epilepsy are far less fortunate and suffer horrendous abuse, from bullying and exclusion to online trolls who target us with flashing images to trigger seizures.

The first time I became aware of the stigma surrounding epilepsy, was when I saw posters around a tube station, designed by a well-meaning epilepsy charity, saying that people with epilepsy live with the stigma that they can’t have children. My then-boyfriend (and now-husband) was with me at the time. Fortunately, he was unfazed by anything epilepsy-related, and has always been resolutely by my side in facing the challenges. But over time we both became more aware of prejudices, in both social and professional arenas. Despite its huge prevalence, people are still terrified of epilepsy. Many people have expressed shock when they find out I have epilepsy, because as they say, I don’t “look like” I have epilepsy. It has always made me wonder… what do they imagine that someone with epilepsy looks like?

Epilepsy awareness

One of the most challenging issues for people with photosensitive epilepsy is the staggering lack of awareness. Hazards include flashing lights, bold and contrasting patterns (such as stripes), and bright screens – among others. These days, the hazards are everywhere. I’ve stopped going to most events, as professional photographers rely on a series of tall stands around the room that flash every time a picture is taken. Websites will suddenly display psychedelic pop-ups, and TV shows are interrupted by adverts with flashing images. Flashing lights are used in children’s birthday parties, school performances and sports arenas. Offices and shops are covered with large, bright screens, and meeting rooms have densely patterned carpets and walls. Even children’s trainers are not immune!

For this reason, photosensitive epilepsy is a great example of the social model of disability – the idea that society, rather than medical conditions, disables people. From a medical perspective, I do not have a disability. I have found a medication that totally controls my seizures. But increasingly I find myself exposed to a trigger that leaves me feeling confused and shaky in the moment, and unwell for the rest of the day. Acknowledging society’s role in disability helped me to understand why life with photosensitive epilepsy has got so much harder and more exhausting in recent years. Epilepsy doesn’t stop me from going to concerts, purchasing children’s shoes, or enjoying a wedding. But society does when it chooses to insert flashing lights into so many unnecessary arenas.

Epilepsy in the office

I am lucky enough to work in an incredibly supportive company, that helps me to navigate these hazards. At Moorhouse, my wonderful colleagues are already well accustomed to switching seats with me every time we enter a meeting room to find the place that I can best avoid any triggers. Nothing is too much trouble – from tailoring work social events, to changing all the images in a PowerPoint presentation (and as many will know, we consultants love our PPTs!). In honour of Purple Day, I am presenting on epilepsy to the company in an all-staff meeting.

Two of Moorhouse’s values are integrity and courage. I have benefited hugely from these, both in terms of sharing my lived experience, and operating in an environment where disability is respected, not criticised. It’s great that people feel comfortable talking to me about epilepsy, and I am grateful for the acknowledgement that it impacts my life. I never feel uncomfortable talking about my epilepsy. It actually makes me more uncomfortable if people strive to avoid the subject or insist that it does not define me, as the implication is that epilepsy is something to hide away.

What next?

I first wrote publicly about epilepsy as part of a Disability Awareness programme that I ran at the British Embassy Tel Aviv. I shared an article with the Foreign, Commonwealth & Development Office (FCDO) global network and was amazed by the response. Colleagues with epilepsy from around the world shared back their horrendous experiences of exclusion and discrimination. Their challenges have inspired me to write this blog.

So, my call to action on Purple Day is three-fold:

1. Remove hazards in your control. Do your children need flashing lights in their trainers? Do your work products and LinkedIn posts need high contrast images? Will flashing lights really improve the celebration you’re planning?

2. Challenge others to do the same. Lodge a complaint to Ofcom when TV shows or sports coverage are full of flashing lights. Challenge your school or workplace to remove flashing lights from their events. Call it out as a negative when reviewing products and sites online.

3. Spread the word. If you agree with what you have read here, please share with others.

Thank you so much to Natasha for sharing your personal journey and experience of living with epilepsy.

You can find out more information on Purple Day and how to support those with epilepsy here.