Ally Lloyd tells her story of what it is like living with epilepsy at university.
Epilepsy is a neurological disorder where seizures occur as a result of abnormal electrical activity in the brain. I have epilepsy and it’s a nuisance. I’m in my second year at Glasgow University and whilst I love my friends, my course, and the city, I have been conscious of the extra challenges my epilepsy brings; particularly regarding my independence, socialising, and the academic side of things, which are all core parts of being at university.
Originally, the idea of moving into halls was something I was really excited about, but I very quickly realised that living independently wasn’t going to be as easy as I had hoped. After a week of living in halls, I had a seizure involving some hot water which led to second and third-degree burns and a week in hospital. I realised that whilst independent living is a challenge for everyone, having epilepsy was making it a challenge in a different kind of way. For example, the hot water incident highlighted that cooking wasn’t always something I could do safely. Even showering became more of a challenge, having taken the privacy of home showers and being able to leave the door unlocked in case anything happened for granted. Living in a flat this year has made all of these things a lot easier as my wonderful flatmates are always happy to help, for example, with cooking; my friend Beth and I have developed a reputation for batch cooking lentil chilli and filling our freezer with it. This means you can cook on the good days and just reheat in the microwave on the hard days, just one of the many lessons in independence. It has been a very steep learning curve and one that I am very much still on.
It also felt like epilepsy threw a spanner in the works with the social side of things, especially initially. It felt like a big deal when making friends when I first came to uni; do I tell people or not? It’s not like people need to know but what if I was to have a seizure? In reality, these were mostly just worries in my own head, and things were easier than I expected. This was partly because two of my best friends from home, Beth and Ross, were also studying at Glasgow, and the first friends I made were so kind about everything, which definitely helped with my confidence. When I had my first seizure in Glasgow, my friend Jamie whom I’d only known for a little over a week, came to A&E in the ambulance with me. The paramedics asked if we were a couple and all we could do was laugh because of how little we knew each other. Friends came in to visit, with Beth and Ross there most days and the new friends I had made all came piling into my room to watch The Great British Bake Off in order to continue a tradition which we had started the week before. This meant so much to me as I was so worried about being left out or forgotten about, or that they would all see me differently. Even now, when friendships are secure, things can still feel tricky. I often have to miss things like nights out because I am too tired or too physically vulnerable. There are periods of time where I feel like all I am doing is cancelling on people, who I genuinely really do want to see.
It can make it scarier to push yourself outside of your comfort zone socially, with the worry of what would happen and what would people think and what would happen if you had a seizure there. In first year, I did push myself out of my comfort zone and went to the British Universities & Colleges Sport Trampolining Competition in Birmingham, and despite having a lovely time, I found it a really stressful experience and ended the weekend in an unknown A&E following a seizure I had alone. This really knocked my confidence for putting myself out there with things, something I am still working on building back up.
Epilepsy also causes academic challenges for me in quite overt ways; memory problems, attendance issues, and an all-round malfunctioning brain isn’t a recipe for academic success. This being said, the beginning of semesters tend to feel pretty manageable, and the issues usually develop throughout the semester as I get more and more tired. All students experience this cumulative exhaustion that comes every semester, feeling the tiredness build week on week until you finish the term a shell of the person who started it. However, for me, tiredness is a big trigger for my seizures meaning that this exhaustion intersects with my epilepsy and things start quickly to spiral. Lectures, seminars, and labs get more and more difficult to attend. When I do attend, I struggle with the memory problems associated with seizures and medications, as well as a sensitivity to the bright screens displaying PowerPoints and the noisiness of campus. However, all too often as the semester progresses I attend less and less to try and break the spiral and do some damage control, but this is all a balancing act because I want to be around uni and learning all of the content, especially when not all my lectures are recorded. It is worth mentioning that just from a wellbeing point of view I want to attend lectures and be around uni and see friends. Doing the “academic side” of uni doesn’t exist in a vacuum any more than the independent or social side of it does, and it feels a tricky balancing act trying to make them all work. Because of all of this, I tend to finish the semesters completely burnt out. This burnout coincides with exam season, meaning I sat my last set of exams, Christmas of second year, with doctors unsure if I was concussed or not, and the set before, summer of first year, in hospital the week before the first exam.
After the chaotic year that was first year drew to a close, my two best friends, Beth, Ross, and I began to realise how much of a difference supportive friends have when living with a long-term health condition as a young person. Sat in a cafe on Byers Road, we talked about how frustrating it was that it seemed to be luck as to whether young people with chronic health conditions ended up with empathetic and supportive friends or not, as seemed to be the case for many other young people with epilepsy I had talked to. Scribbling away in notebooks we started to come up with a plan for stopping it just being down to chance, and instead equipping peers with an awareness of long-term health conditions and the tools to be empathetic and supportive friends. We set up a blog to share our experiences as a friendship group where two of the three of us had a long-term health condition, Beth has juvenile idiopathic arthritis and set about creating educational resources to be delivered in schools that would allow for students to be equipped with such skills.
This was June 2019 and since then things have grown. We worked hard over the summer of 2019 and created workshop resources for primary schools and high schools, which we have since been going into schools and delivering. Our blog is no longer just the three of us rambling about issues we feel passionate about, but also a platform for other young people to be empowered to tell their stories and share their experiences. As of 2020, we are a team of eight who make up The LUNA (Learning to Understand Needs and Abilities) Project, (but who still meet in cafes). We have so many ideas and plans about where we want to take The LUNA Project, on top of expanding our workshops and blog, we have plans to hold a conference, are working with Masters students to do research into disability education, and continuing to work to empower and educate young people.
So far this semester things with my epilepsy have been stable. Though the nature of it means that it can go so far up and down that I don’t really know what the rest of the semester, year, or even the rest of my time at uni will bring. What I do know is that I am just enjoying it being okay just now.
If you would be interested in hearing more about The LUNA Project or getting involved, then you can get in touch at @theLUNAprojectUK on Instagram and Facebook, @theLUNAprojectt on Twitter, or email [email protected]