This week is Mental Health Awareness Week. It is a much needed time to pause and consider the relationships we have to mental health as individuals and as a society. But each year, the third week in May is also National Epilepsy Week in the UK. To me, it seems fitting that these two weeks coincide because epilepsy and mental health (and its counterpart mental illness) have always had a very close relationship.
Epilepsy is a condition of the brain that makes a person more likely to have seizures.
Most people will be familiar with the drop-to-the-floor-and-shake seizure (called a tonic-clonic), but there are many different types of seizure depending on which part of the brain is affected. Seizures can take the form of absences (when a person will be unresponsive), muscle jerks, repetitive behaviour, hallucinations, tonic-clonics and more.
About 1 in 100 people in the UK have epilepsy. In April 2015, I became that person. My seizures were mostly tonic-clonics, but I’ve also had ‘auras’ or partial seizures, which for me were worrying hallucinations of voices speaking to me. It took me several years to get a diagnosis and even now my epilepsy is ‘idiopathic’ and the doctors aren’t sure why I had seizures.
When I had my first tonic-clonic seizure back in 2011, I was in my last year of university, so the seizure was put down to stress. I was told to try and limit stress in my life, but the years between my first seizure and my diagnosis were a cocktail of stresses. My dad had a heart-attack (and thankfully recovered). My Grandad died. My boyfriend was struggling with a gambling addiction. I was often working multiple jobs to pay rent. I look back on it now and wonder at how much I was dealing with. At the time I was simply taking everything as it came, one step at a time.
Finally being diagnosed was actually a relief.
I can distinctly remember the moment I confessed to the neurologist that I was hearing voices. When she told me it was all part of the epilepsy, I was relieved it was something ‘physical’ not ‘mental’ (which goes to show my own ignorance and stigma for mental illness at the time).
About 40% of the general UK population do no exercise. For people with epilepsy that number is nearer to 80%.
Until recently, epilepsy was considered a mental illness and treated in the same way, both socially and in the ‘cures’ doctors tried. There are a number of mental illnesses that are more likely to coincide with epilepsy: people with epilepsy are up to twice as likely to have depression and anxiety than the general population, nearly ten times more likely to have agoraphobia. Suicide rates are significantly higher and traumatic seizure events can even lead to PTSD. Incidentally, it is unclear how much of these comorbidities are due to psychology and how much is down to physical changes in the brain.
Whilst about 40% of the general population in the UK are sedentary and do no exercise, for people with epilepsy that number is nearer 80%. According to research, many people with an epilepsy diagnosis have a fear that doing exercise might end up making the condition worse, sustaining injury or even dying.
I did not have this mentality.
When I was diagnosed, I started taking anti-epileptic drugs (AEDs) and went on the premise that it was now safer for me to be active then it had been before my diagnosis. I have never learned to drive (partly because I kept having seizures) but my commutes to work have always been a way to get a bike ride or walk into my day. I didn’t see a reason to change this.
My diagnosis coincided with a time in my life where I realised my one-step-at-a-time living had brought me to a place I wasn’t happy with. Like many people, I needed to make a change. I had put my trust into my AEDs wholeheartedly at this point, so saw no reason I couldn’t take on a big personal challenge.
When I decided to hike the Camino, I don’t think I had accepted the full force of my epilepsy diagnosis
The Camino de Santiago had never been on my bucket list until I started googling ‘long hikes in Europe’. When I decided to hike the Camino in 2017, I don’t think I had accepted the full force of my epilepsy diagnosis. But the challenge was actually what I needed to start accepting and acknowledging my diagnosis as a ‘big deal’. Part of that was down to the way other hikers reacted when they learned I had epilepsy: some were confused or concerned, others were impressed, some were obviously fearful about me being out there on the trail, alone.
Walking the Camino, I began to realise that I hadn’t given myself enough credit for (perhaps naively) refusing to see my epilepsy as a limitation. By doing something physical every day, I started to forgive my body for ‘failing me’ in the past. After having a relationship with my body where I couldn’t quite trust or understand it, I could now trust it to get me across countries.
But after finding that strength and acceptance on the Camino, I came home to discover that I hadn’t done what I had set out to do. I still had no idea what I wanted to do with my life – except to walk all day every day. So when I slipped back into everyday life, I hit a post-trip depression that made me feel like I hadn’t gone anywhere. I ended up in a job that made me miserable and I cried most days. I was physically the strongest and healthiest I had ever been. But mentally, I was struggling.
I realised how helpful adventure sports and physical challenges can be to people with epilepsy
Ironically, I found solace in the things that had caused me so much pain in previous years – my body and my epilepsy diagnosis. Because I couldn’t walk every day, I started to run to challenge myself and feel that physical achievement I experienced every day on the Camino. I also began to write about my epilepsy, my diagnosis and how it had led to me walking the Camino, rather than prevented me from doing it.
Through sharing my own story, I found other people with epilepsy who were using sport to help them keep a sense of self. I realised how helpful adventure sports, travel and physical challenges can be to people with epilepsy, and so I launched Seize Your Adventure, a podcast and website to share the stories of other people who are active with epilepsy.
The people I speak to encourage and inspire me to practice what I preach.
In particular, after learning about the sport of trail running a seed was sown in me. I was still hiking and running as much as possible, but it had never occurred to me that I could run the type of trails I hiked. But encouraged by other people with epilepsy – people like the trail runner Diane Van Deren – I decided to give it a go. So I signed up to Race to the Stones, a 100km trail race along the Ridgeway path.
I set my mind to a four month training plan, working my way up from my easy 5Ks. During that four months, I felt like I was learning about my body and my epilepsy all over again. I was challenging myself more physically than I had on the Camino. I had to learn about hydration and fueling for long distances. I had to learn about pacing – which walls I could break through and which ones were there to keep me safe and seizure-free. Whilst my medication was still working and I had not had a seizure since 2015, because I still had no idea what might cause a seizure, I found that my anxiety over this uncertainty was heightened by doing a sport I was unfamiliar with.
I took the training at my own pace. I chose to train alone so that there was no pressure from anyone other than me to do my best.
Last July, I ran 100km in one weekend.
When I crossed the line, my boyfriend, my parents and my sister were waiting for me. I cried ugly tears of pride.
In my journey with epilepsy, I have experienced ups and downs and moments of confusion and anger. The same as many people living with epilepsy. I did not turn to exercise to help with my diagnosis, but walking the Camino helped me reconnect with a body that had let me down in the past. Learning how to run 100km helped me to accept and acknowledge what having an epilepsy diagnosis means and how it affects me mentally as well as physically.