CW: Mentions of mental health issues and medical complications involving medication.
I was always a bright kid.
By the time I was two and a half, I’d learnt dozens of phone numbers off by heart and was able to recite them at the drop of a hat. All four grandparents, my dad, my mum, my mum’s best friend, her other friend, our neighbours, mobiles and landlines, the lot. Getting tested on these is still one of my earliest memories.
I’d learnt a couple more tricks by age three. How to call 999, how to ask for an ambulance, and how to put my mum into the recovery position.
By four and a half, I’d seen my mum clear a restaurant at the drop of a hat. I mean, clear a restaurant, while I, alongside my two-year-old brother, was rushed onto the sidelines to look at the scene in front of me.
An exciting moment for many of us was when I was eight, I was allowed in the car’s front seat. I also learnt how to steer the wheel to land us safely in a hedge and get my mum’s foot off the acceleration pedal.
By twelve, I learnt to recognise the signs of depression following a seizure, as the aftermath saw my mum stripped of her independence and freedom.
By eighteen, I watched as she suffered multiple overdoses, unable to talk or walk, caused by the medication that was supposed to keep her safe.
This article is the first of a three-part series, set out to explain, demystify, destigmatise epilepsy, and what it means to live with the condition.
An important part to underline is that this matter is bigger than the condition itself. Much of living with the condition is dominated by the stigma associated with it, a lack of recognition that it’s bigger than the seizures themselves, and the impact that a total absence of medical research has.
My mum has catamenial epilepsy, a type of epilepsy linked to fluctuations in her hormone levels.
She had her first seizure when I was six months old. She was feeding me, in her arms, and the next thing she knew, we were both out cold on the kitchen floor.
Epilepsy has been a pretty big part of my life from the get-go.
I was lucky in many ways. I wasn’t a young carer. My mum had a support system of adults around her. But that didn’t limit the risk and responsibilities my younger brothers and I took on as kids whenever we were alone with Mum.
Epilepsy is more common than you might think. More than 1 in 100 people in the UK, that’s more than 630,000 people, live with the condition, and a further 600 people are diagnosed every week. That’s pretty close to the 1,000 diagnosed with breast cancer each week, the most common type of cancer in the UK.
Unlike breast cancer, however, in 50 per cent of epilepsy cases, there is no known cause, and there is no cure.
This isn’t a test of which disease is worse. Clearly, living with any condition, curable, incurable, lifelong, chronic, or temporary, is horrific for those impacted. Those numbers are just to give a sense of how common the condition is, despite how little you might know about it or have heard about it.
There are more than 40 different types of seizures. My mum has the type of seizures you might be imagining, known as Grand Mal, or tonic-clonic seizures. These are full-body seizures, where she loses consciousness and control of her body.
In my mum’s case, these are controlled with medication, and so they happened around once a year when I was growing up. More than ⅓ of people with epilepsy cannot say the same, and are forced to live with uncontrollable seizures, without any medication to treat them.
Once a year might seem manageable, but the condition is so much bigger than the seizures themselves. We like to tease Mum for having had two nose jobs, but the truth is that when I was thirteen, she had a seizure where her nose was badly broken, requiring multiple surgeries to repair.
For around a month after a seizure, my mum suffers from ‘fogginess’, short-term memory loss, exhaustion, depressive symptoms, alongside the very physical bruising, concussions, and broken bones that may have accompanied the event.
One other thing to point out, that may seem obvious, is that many people with epilepsy, my mum is a case in point, have never seen themselves have a seizure. For those with Grand Mal seizures, it is only those around them, their friends, their family, who witness and remember.
But I want to get away from the actual physical condition, and explain a little more about how the institutions we lived within have been disabling, even where the condition was not.
My mum’s condition started just after she had me. The medication she’s on can cause birth defects in children, so when pregnant with both my younger brothers, she made the choice to stop taking the medicine that prevented her seizures. That’s what made her so prone when I was growing up, magnified the risks, and meant I was pretty versed in what to do if a seizure happened… which they did.
That’s a choice that no young mother should ever have to make, to be left with the risk of causing medical problems for her unborn children, or risking their lives if she does have a seizure.
One of the major issues was not the medication itself, but the lack of research into other forms of medication that were compatible with pregnancy. If epilepsy research itself is underfunded, research into epilepsy and women’s hormones is a lost cause.
A similar problem happened when Mum hit menopause. When given HRT medication, a regular medication for most women, it quickly began to interact with her epilepsy medication, something that the doctors had not checked fully, leaving her unwell and prone to seizures.
The advice given was to up the epilepsy medication instead, putting my 5ft 3 and a half mother on the maximum dosage. Perhaps one of the scariest moments of my life was watching my mother lose the ability to talk, to walk, left vomiting and visibly scared and shaking, while we struggled to work out what had happened. She had overdosed on medication that should have protected her.
This wasn’t an isolated incident. On such a high dosage, Mum has continued to suffer from sporadic overdoses on her medication, impacted by food, exercise, alcohol, and who knows what else. By now I’ve learnt how to recognise these even over the phone, calling home from university, just to catch as her speech starts to slur and vision starts to go.
Now she’s been left with the choice to stop taking her HRT medication or her epilepsy medicine. A choice that’s necessary given the absence of information about how the two interact and what to do about it.
Earlier, I mentioned depression. ⅙ of people in the UK suffer from depression. For those with epilepsy, that number rises to ⅓.
Every time Mum has a seizure, she loses her driving license in the UK for a year. This is a system designed to keep those with epilepsy and other road users safe. But as Mum points out, she’s probably more dangerous driving home from the pub after a glass of wine.
I grew up in what, in many ways, might be described as a totally idyllic English countryside, with rolling fields and thatched houses. There are regularly lambs in a field next door. For Mum, however, losing her driving license left her totally stranded. With no bus services, the nearest train station was three miles away, which meant Mum had lost all independence for a year following every single seizure.
Having had your license for just a few weeks before losing it again would be enough to induce depression in anyone, let alone someone who is one of the most fiercely independent women you might ever meet.
As kids, we were unable to get to school, which was five miles away. Luckily, the school put on a bus service, collecting us and a couple of other ‘problem kids’ who were otherwise stranded. Starting with us, at 7 in the morning, I’d often drag my youngest brother, six at the time, quite literally kicking and screaming on board. It took more than an hour to go five miles. On other days, family, friends or neighbours were able to take us. But we stood out, Mum unable to meet our teachers or pick us up at the end of the day.
Those things are a privilege to begin with, but having them stripped because of structural barriers responding to a generalised medical condition, which failed to take into account individual circumstances, is definitely frustrating.
One of the reasons behind writing this is to connect with other people who live with and alongside epilepsy. The stigma around the condition, both for my mum and for us, meant that growing up, I rarely talked about what it meant to live with the condition.
Next time, I’ll sit down with Mum to hear a little more in her own words about what it means to live with epilepsy.