This is the third year in a row I have sat down and tried to write something about my experience with epilepsy, and my 13th year of (knowingly) living with the condition. I’ve toyed with posting a variation of this many, many times, but only now have I finally felt in a safe enough place with my condition, both mentally and physically, to do so. Over the years I have had so many thoughts about what I would say if I posted something like this, and honestly the vulnerability I felt writing as much as I have – with, believe it or not, a lot of the finer details left out – had me shaking at the keyboard. To many it will come as a surprise, to others they may know little or parts of it, to some of my closest friends they know a large part, but only really do my family know even close to the full story. Some may read this and not understand why I find it such a big deal writing about my experience – after all, for years now all over the Internet people speak so rawly, openly and honestly about many mental and physical health conditions, many much worse than mine – but for me, someone who famously hates “being vulnerable”, this has felt like a pretty big deal. For the first time I have truly experienced what it might feel like to lay yourself bare on a public forum (one on which generally most of us present only the best sides of ourselves), and I have to say, I have a huge newly found respect for those who have been doing it for years!
In this following post I plan on writing about my experience with epilepsy, something I spent most of my life trying to hide, in the hope that it raises just a little extra awareness, even if that is just within my relatively small circle of friends or followers. I’ve left lots of the finer details of the seizures themselves out, because a) they’re pretty harrowing both to read and write about, and b) they’re pretty personal, and those who need to know the nitty gritty, likely already do. I am also writing this in one long sitting and, knowing myself, won’t be able to bear reading back through it, whether that’s to look for typos or brush up on my writing and literary skills, so apologies in advance for anything found wanting in these departments! Anyway, enough putting it off…
I had my first seizure during the night time when I was 14, but it took another year, another seizure, and a lot of hospital appointments, MRIs, EEGs and blood tests to finally be diagnosed with epilepsy at 15. Being the age I was, and always wanting to consider myself as a pretty “normal” child until then, I decided that I wasn’t going to let this illness define me, which in principle sounds like a great idea, but I definitely took it too far to the extreme. I was lucky in the sense that it appeared that my seizures were only ever nocturnal (while asleep), and they were fairly infrequent, so day to day I managed to convey the front that nothing had changed, and indeed I only told very few of my close friends, but it was never an open topic for discussion.
Behind the scenes, I was grappling with the realisation that my life was likely about to change forever, going from barely ever popping a painkiller to having to be on daily medication for the rest of my life, and not knowing if I’d ever be able to drive a car or go to a party. It took me nearly a year – my first taste of true anxiety – a lot of secret teary phone calls to family members, several different neurologists, and 3 different medications until I finally found a medication that seemed to work (with minimal side effects).
What is pretty crazy is that I managed to hide a lot of this from so many people that on the outside most hardly even noticed anything at all was going on. I also managed to convince myself that even though I had epilepsy, mine “wasn’t as bad” as others (for example, due to them being nocturnal, or also due to them not being triggered by flashing lights, a common misconception that in fact is only one specific form of epilepsy). Despite a lot of advice from doctors to read up about my condition and talk to other people going through a similar thing, I never once went on a forum and avoided reading anything that might make me accept with more gravity that this was actually quite a big deal.
After a few years stable on medication things seem to calm down, and other than the odd blip here and there, I very effectively compartmentalised that side of my life and concentrated it into a neat little pill taken once an evening. Fast forward about 10 years, I started becoming slightly more open about having epilepsy, but I still managed to keep up pretty good appearances and brush any seriousness under the carpet, despite it being a daily anxiety, always there humming along in the back of my mind: Have I got my meds? Did I take them this morning / evening? Do I have enough on holiday with me? What if the trip is extended or my flight home is cancelled and I run out? (based on a true story). What if I drink too much, or have too late a night? I know flashing lights don’t affect me, but what if today, in this club, for the first time, they do, and I have a seizure in the middle of the club? (luckily not based on a true story).
However, everything changed when 2 years ago when my neurologist told me that I was going to have to start, slowly but surely, coming off the medication I was on and onto a new one, since – something we always knew – the medication I was taking was “not appropriate for any female of a ‘childbearing’ age” (not that I was planning on having any babies any time soon). This is a process that can take anything from months to years, as finding a new appropriate medication is something that has to be done gradually, monitored closely, and adapted where necessary.
After so long managing to downplay and ignore as much as possible this little ‘complication’ in my life, it suddenly became something that I had to once again really pay attention to, think about, discuss and worry over. I started slowly building up a dosage on a new medication while slowly decreasing my old, and having constant blood tests and medical check ups to monitor levels of iron and the like in my blood, in case I don’t react well to the new one.
Things seemed to be going more or less ok until rather out of the blue I started to feel very strange at work. What I now know, and crazily didn’t then despite living with epilepsy for 10 years at this point, was that I was having an “aura”. The last thing I remember is lying on the floor of our office before I woke up in hospital, with lots of people asking me questions, and struggling at answers that I knew I knew, but that I just couldn’t figure out (I was in a postictal seizure state). It was as though my memory was sort of rebooting, and the information was there, but it just wasn’t quite loading. I found out I’d had three seizures – the first ever day-seizures of my life – and I was kept and monitored in hospital overnight. The conclusion was that this new medication wasn’t agreeing with me, so rather than keeping my seizures at bay, it triggered one of my worst ones ever.
I was incredibly lucky that I had an amazing boss and colleague with me at the time who I had felt safe and comfortable enough to discuss my condition with lots of before, and who looked after me amazingly, both during and after. I’m also incredibly lucky to have amazing friends and a large, incredible family and, feeling one of the most confused, scared and exhausted of my life, they somehow still managed to talk their way into my hospital room (Covid rules said only one visitor at a time, but my sisters can be charming and convincing when circumstances require), and made me cry with laughter, fed me snacks and kept me sane and in touch with reality.
However, the month following this episode, after I was discharged from the hospital and went to stay at my mum’s in the countryside, was one of the hardest of my life. My brain felt like it had rewired itself, and in completely the wrong way. I would get random and frequent mini brain zaps and disassociation, I had some of my darkest days and thoughts, I genuinely worried I would never feel normal again and would have moments of inexplicable panic, most commonly whilst trying to fall asleep. One particularly bad panic attack came out of the blue while brushing my teeth one night, and ended with 25 year old me hysterically crying, thinking I was either about to have another seizure or maybe even die, and asking my mum to sleep in my bed with me.
Almost exactly a month after this, I had a bank holiday weekend planned with a group of my closest friends, where we were planning a day trip to Brighton and an overnight stay at my mum’s in Sussex. I nearly cancelled, not sure I was ready to see people again and scared about ‘killing the vibe’ with my low mood. I aired my concerns to my friends, who were amazing and said there was no pressure at all, but they’d love to see me and if I needed to scoot off it would have been completely fine. So we went ahead, and it was honestly the best tonic I could have asked for. A sunny day in Brighton, laughing, shopping and eating with some of my favourite people was the first day in a month I had felt normal again, and the first time I had gone hours without thinking about what had recently happened. After that day I started, slowly but surely, seeing more friends, coming back to London, and starting work again, with everyone being incredibly patient with me. When I was ready, I tentatively started on another new medication, I had 6 amazing epilepsy therapy sessions with the NHS, and I started reading up more on my condition, understanding so much more and being able to put words to things and experiences I had had over the 10 years I had been trying to ignore. One of my favourite moments was looking through funny epilepsy memes which my amazing friend and housemate at the time had found for me, and laughing madly at the relatable – that giddy kind of relief laughter when you suddenly realise: oh my god, it’s not just me!?
All in all, it’s been a right old rollercoaster of a journey. Everyone has such different experiences of not just epilepsy, but all sorts of illnesses, visible and invisible. Even though it sounds crazy, I sometimes get a kind of ‘imposter syndrome’ about my own epilepsy, worrying that I’m a bit of a phoney because I don’t have it “as bad” as so many people, and that I’m lucky enough to still lead a relatively normal life. I’m happy to say that I have now been stable on a medication that I feel comfortable taking (twice a day, one in the morning, once in the evening), and as of March this year I got my drivers licence back and I have been over 2 years completely seizure and aura free (touch wood!). But the reality is that it took me way too long to truly accept what I had and to speak openly about it – probably both because of my own desire to appear ‘normal’, but also in large part due to how little understood epilepsy is by those who have no experience of it. Yes, I can drink and go to parties. No, I will not have a seizure due to flashing lights. Yes, I have to take medication every day. No, I don’t know if I’ll ever be able to stop taking them in the future. Yes, it is possible to live abroad (with a lot of forward planning and preparation). Yes, no, yes, no. And these answers will be different for everyone.
My epilepsy is not a defining feature about myself, and nor do I want it to be, but it is very much something that affected me hugely, at a pivotal moment in my development into adulthood, and likely defined a large part of who I am today. As cheesy as it sounds though, I’m not sure that I would change it. I’ve even grown up to be, in a weird way, almost quite proud of it, and how much I have still managed to achieve, explore and experience, despite of it.
I only wish I had known more about it and how diverse it can be – not just from the scary forums online and pamphlets that they had out in the quite terrifying neurology departments of big, clinical hospitals. I wish I had known more people “like me” who had gone through the prognosis, come out the other side, and still sometimes got it a little wrong at parties without a fatalistic episode. There are so many varying degrees of severity, triggers and types of epilepsy. In a weird way, hearing other’s stories, particularly the more everyday and alike ones to my own experience (not just the extreme, tongue-swallowing ones) brings me a lot of comfort, and helps de-stigmatise what is in fact a much more common condition than a lot of people, myself included until recently, realise.
I am hyper aware that I am incredibly lucky to be able to do many things that people who live with more severe or less controlled seizures can’t, but with time I have also come to be aware that this doesn’t make my experience any less valid or scary. So if nothing else, I hope that my story, held so closely to my own chest for so long, relieves even an inch of the knot inside another’s. Whether this be because you yourself have gone through something similar, or you know someone who has, all I can say is that too late did I fully appreciate the huge comfort in knowing that you are not entirely alone with, as they put it in The School of Life “all that feels most bewildering, peculiar and frightening in us”, or in this case, living with epilepsy.
Further reading links:
Grubby Writes 