How being upfront about my epilepsy helped my life and career

At the junction of Sidwell Street in Exeter you would once have found some underground public toilets, half-way between the university and where an old boyfriend of mine lived. I spent a fair amount of time in those loos between 2000 and 2001, between absences and panic attacks, generally attempting to get some semblance of air back in my lungs. Sat in those toilets was the first time I remember linking my epilepsy to my mental health.

So it’s apt, for me at least, that National Epilepsy Week and Mental Health Awareness Week both fall in May because those two things go hand-in-hand.

I was first diagnosed with epilepsy in 1994, aged 13. I “grew” into it. Epilepsy isn’t unusual, approximately one in 100 are affected in the UK. Whilst they are completely different things, research estimates one in three people living with epilepsy also suffer from some level of anxiety or depression. Because it’s not always something you can see, it’s difficult to expect people to know what to do. It’s also difficult to explain.  Technically it is a sudden burst of intense electrical activity in the brain resulting in a seizure (there’s over 40 different types) - a temporary disruption to the way the brain normally works, mixing up the brain's messages. Like a traffic jam. 

I’ve likened an absence to the moment when Dr. Sam Beckett makes the jump in Quantum Leap – one second you’re there and the next second you’re further down the timeline of someone else’s conversation – trying to quickly decipher what and how much you’ve missed.

That summer, at 19, my neurologist prescribed new medication and suggested I have Cognitive Behavioural Therapy (CBT). It was, and has been in subsequent years, probably the most important thing I’ve done to unlink the anxiety, the condition and who I am. And at the same time, recognise that the three are fundamentally linked.

After over 20 years of working, I thought a lot about what I’d suggest to my younger self, all wrapped up in anxiety, anger and fear of looking stupid at the beginning of her career.

It’s yours to own

If you have an invisible disability, it is your right to tell people in your own time, if ever. For me – being upfront on it has been really important.

In the early part of my career I spent a lot of time being quiet, not talking in meetings because it was less embarrassing than having an absence or people thinking I wasn’t smart enough - something I already had a chip on my shoulder about.

In 1999, I had an interview at Goldsmiths. No one had been to university in my family before and, to be honest, I knew very little about what it would entail. I turned up in my mum’s Next suit. During the interview, I was asked what my favourite film was and just as the lecturer asked the question, I had an absence - but whilst my brain checked out, my mouth stayed in. When I "came to", I’d apparently, between smacking my lips said ‘Shakespeare in Love’ which I’d never even seen and still haven’t to this day. I sat there, all “post-ictal”, humiliated, knowing I’d messed up my chance. I didn’t get a place at Goldsmiths, but if I’d told the lecturer what had happened, I might have.

The more I’ve spoken about having epilepsy and its impact on my mood(s), the more I’ve appreciated it's part of what makes me different, and in turn, manage it. Not owning and talking about it has meant I’ve missed out on – and definitely ducked out of – plenty of opportunities. These days I’m probably pathologically open but to quote [US academic and author] Brené Brown: “I want to be in the arena.”

Patience and persistence

For a long time, I was angry about how long it would take me to learn things. When I was first diagnosed I could lose up to 10 minutes each lesson to absences. Concentration and memory problems that can come with any neurological conditions, as well as stress and anxiety, can mean it is harder to take in information.

Now I use memory aids. My desk is surrounded by colour coded Post-it notes, some with lists, others with “mind maps” to remind me how things fit together. I was late to the world of ad tech so to understand anything I’d have to draw diagrams to get my head around it. I’d hand write something several times to make it stick, and I record myself and listen back to hear whether I was actually making sense. My speech can also be affected, so I take out any potential words that could trip my brain up.

That additional effort is now crucial for me in terms of learning, but it also means my employers benefit and in turn, so does my career. But most importantly, it allows me to keep calm.

There’s no shame in getting help

After my initial CBT, I avoided any sort of coaching or counselling for years. I’d take my medication and if I did have a seizure I’d pretend it didn’t happen, covering it with expert levels of humour. One of my pills helps when I have “cluster” fits which mainly happen in the morning. You’re not meant to take it regularly – it’s an add on for when you’re having a load of extra “activity”. When I first started taking it, I imagined myself like Bradley Cooper in Limitless, finally accessing 100% of my brain, but it’s so important not to rely on them.

In more recent years, regular coaching and counselling sessions have helped me confront all the things I’d put in a “box under the bed”. That time spent was also vital in me making the decision to be brave and to pull the rug out from under myself, leaving a job and people I loved to try something I knew would test me.

I always hated asking for help, but finally embracing it made a big difference in leading an excellent life.

What it means for the workplace 

The focus on inclusion and open discussions in recent years means I’ve realised so many other people are working to adapt due to their own invisible challenges such as dyslexia or ADHD. That’s helped empower me to be open with my team and our wider business. Where once hiding my epilepsy felt like another job (which got in the way of the day job at times), now I can focus more on taking care of myself to work better.

I’ve found that most of the time, people I tell are just interested in understanding what it’s like for me. A handful of people have reacted with discomfort, but many more have been supportive or even asked for advice . For example – parents have spoken to me about their child with epilepsy and how they can best support them. 

I would urge employers considering how they might support staff with invisible disabilities to ask questions, be interested, and accept that not everyone will work to the desired process and may have to go at a different pace. Employers need to adapt to their needs, not the other way around. In fact, people who have faced different challenges often think laterally, and utilising that can create exciting new ideas and solutions.

To be fair, I’m not sure younger Katie would have listened very much, if at all, to what I had to say. But at least she’s out of the Sidwell Street toilet.

Katie Grosvenor is the chief engagement and growth officer at Group M