To those bravely battling epilepsy – the P&J

It’s National Epilepsy Week 2022. Until the 29th of May, charity Epilepsy Scotland is raising awareness of the condition and communicating the positive message that people can ‘Excel with Epilepsy’. When I noticed this campaign on social media, I was delighted to see it. Epilepsy has a special resonance in my life because two people close to me have developed it in recent years. Before this happened, I barely had any knowledge of the condition at all.

One of my best friends, who I’ve known since we were 12 years old, was unexpectedly diagnosed with epilepsy less than five years ago. There were mild symptoms when he was a young loon – waking up and not knowing where he was, feeling lightheaded – but doctors never suspected epilepsy. It was one day at work in his mid-twenties when it announced itself, in the form of a massive seizure. Since that day, my friend’s life has changed dramatically.

For one thing, he can’t drive anymore. He’s also been unable to work. His employer at the time he had the seizure kept him on staff for a few months, but eventually let him go. Since then, he’s been unable to find anything that suits his unique circumstances. He’s a dad. His girlfriend has to go out to work to keep the family afloat. Any job he gets would have to be home-based, flexible in terms of hours to fit around childcare, and changeable if he had a bad day.

For the last two years, he’s been on a spate of different medications, in varying doses. As I understand it, there are around 30 different types of medication available, and it is a system of trial and error to try and find the right one. His seizures have been sporadic. Every couple of months he’s been in hospital, or out of action for days following a grand mal seizure. The rest of the time, smaller seizures have disrupted his days. Try finding an employer who will happily allow for all this. They’re rare, sadly.

Imagine you woke up one day and the rug was pulled form under your feet: no job, no car, no predictability to life

There are enormous mental health implications associated with a diagnosis like this. Imagine you woke up one day and the rug was pulled from under your feet: no job, no car, no predictability to life. The constant stress of seizures and the threat of seizures hangs over your head, and you’re anxious that you will be unable to provide for your beautiful daughter as you’d want to. You soon realise you aren’t able or socialise with friends as you did before. People drift away. Fun seems a distant memory. You get low, fast.

My friend is one of the strongest people I know. A true inspiration, who I’m blessed to know. He’s weathered this storm with immense courage and dignity, worn down but not defeated. He’s still able to crack a smile and remain positive about what the future holds once things become more stabilised. He’s confident that he’ll get there with the right medical plan in place and I hope and pray that he will, soon. I also hold out hope a job will come up. We are all willing him on.

I mentioned that there are two people in my life with epilepsy. The other is my cousin. He was recently found to have a rare form of the condition, resulting in small seizures happening in the brain all the time. It disrupts his sleep significantly, making him exhausted through the day. Sadly, this is affecting his cognitive development. At the end of primary school, when he should be poised to advance academically, he has regressed in his reading and numeracy.

You wouldn’t know that my cousin is grappling with this unless you were told. He is a happy wee boy, if a little moody at times. He has a passion for life and play that puts others his age to shame. He is dearly loved by his mum, dad, and older brother. His personal and emotional needs are catered for. As with my friend, I am hopeful that he will find other necessary forms of support throughout his life. But this isn’t inevitable by any means.

There are enormous mental health implications with an epilepsy diagnosis

As I write this article, three national organisations representing individuals with complex neurological conditions have issued a statement expressing deep concern over changes to nursing provision an area of Western Scotland, which they say will leave the area as the only place in the country without dedicated cover. My cousin happens to live in this area. Such provision will significantly affect his ability to flourish in years to come.

How many other children in Scotland face a postcode lottery when it comes to specialist support just now? And how many families will face cuts to services in years to come, as the NHS is forced to tighten its belt in an austere financial climate? The nature of epilepsy, and other neurological conditions means dedicated, specialist support is necessary. But a lack of awareness of these conditions means ensuring such support is an uphill struggle.

If there are two things that have been impressed on me by the experience of loved ones with epilepsy, it’s the need for more awareness, and a willingness in various sectors to adapt to people’s needs. Progress towards these goals is being made but it is clear there is a long way to go. I hope many political and industry leaders will join the campaign for change in years to come, to ensure people with epilepsy can truly excel in Scotland.

A version of this article appeared in the Press & Journal on 31 May 2022.

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