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By Aisling O'Connell
Hello hello!
As this is my first post for The LUNA Project (scary but mostly exciting) I’ll begin with a little intro about myself. My name is Aisling, I’ve recently turned 21 and I grew up in Greater London. I’m about to enter my fourth and final year studying Politics and Economics at the University of Leeds and I’ve just finished a year abroad (cut a bit short- thanks covid) in Rotterdam in the Netherlands as part of my degree. I love cooking, making collages, creating obsessively niche spotify playlists and going out dancing with my pals. Also, I have epilepsy.
About that... I experience complex partial seizures which occur mostly in my parietal lobe, but sometimes in my temporal lobe. As you’ll know if you also have epilepsy, each person experiences seizures so differently- no two are the same. For me, I can best describe my seizures as a kind of ‘electric shock’ type sensation, with largely somatosensory symptoms such as painful tingling, during which I am conscious but unable to respond/ move/ speak. I have no definite ‘triggers’, but my seizures are a lot more likely to happen (and happen more severely) if I’ve slept badly, if I’ve had too much caffeine (a struggle due to my love for coffee & diet coke), and most of all if I’m stressed out. They began around the age of 14, but were infrequent and not too severe, and due to my previous misconception that tonic-clonic seizures were the only type of epilepsy, I had no idea what my symptoms could be and largely tried to ignore them when they occurred. Two years later and my A levels roll around… hello aforementioned stress factor! My seizures started happening more often, lasted longer and felt more painful. After a couple of months of tests and appointments I received my diagnosis. Aside from the medical side, the most significant (and slightly unexpected) challenge I’ve encountered since that diagnosis has been navigating friendships as a person with epilepsy.
The broad arc of my relationship to friendships and epilepsy goes like this… initially I was very open with friends about my condition, some rocky experiences changed this and caused the opposite to be true, but I’m now learning to become more open again. Aged 16, just diagnosed and with very little prior knowledge of the condition or its associated stigmas, I was very frank about my diagnosis, and had no qualms about speaking to my friends about it. I think a factor here was that, having grown up in the same area of NW London suburbia all my life, I had known the majority of my friends for years; epilepsy wasn’t one of the first (or even one of the first fifty) things they knew about me, and something I wasn’t defined by in their eyes. It wasn’t a big deal to me nor to them- just something I would mention in passing conversation sometimes.
This changed in 2017 when I left home and moved to Leeds for university. Suddenly I found myself surrounded by new people and making first impressions all whilst living with a chronic condition. It was at this point that the stigmatization, misconceptions and general lack of knowledge surrounding epilepsy became apparent to me. To be completely honest, I was previously guilty of these myself too. As I mentioned, prior to my diagnosis I was only aware of tonic-clonic seizure types and assumed all were photosensitive (in reality this figure stands at just around 3%). In conversations with new friends during which I mentioned my condition for the first time, I saw these same misconceptions reflected. On occasions these conversations have happened during pres, to which the fact I’ve been about to head out to a venue full of strobe lights has been met with confusion! Of course these friends weren’t to blame at all, and most responded with a genuine interest in learning more about my experience with epilepsy, all of its different forms, and what they could do to help in the event of a seizure. However, the lack of general education about epilepsy means that every new friendship entails a lengthy conversation in which you have to be quite vulnerable, which is both daunting and kinda exhausting!!
Although the majority of my experiences with epilepsy and my friends have been positive (they’re all lovely), a few have been more difficult and have led to lots of reflection on the nature of friendships whilst living with a chronic condition. I remember one occasion during which, after months of knowing this person, I told them about my epilepsy. Their immediate response was to bring up all the barriers such a diagnosis would surely cause me, such as inability to get a driving licence or play certain sports. Although I’m sure this wasn’t mal-intentioned, it was difficult to respond to and sparked doubts in my mind as to what the people I told about my condition thought about me and my ability to succeed. On another occasion, a childhood friend was staying with me, and I introduced him to some new friends who I hadn’t yet told about my epilepsy. A few drinks in, he announced to the group of around 10 new friends that I had epilepsy, and I was then faced with explaining the whole situation to a large group whilst all I had bargained for was an evening having drinks with pals. Again, his intentions were only good and I’m so grateful that he was looking out for me, but the way he went about it took away my control regarding a topic I already feel pretty powerless about. A combination of a good few experiences such as these, and how tiring/daunting it can be to explain my condition due to misconceptions and stigma, meant that I became less open about my condition and less likely to talk about it amongst newer friends or acquaintances.
Luckily however, the past few months of lockdown fuelled contemplation have led to a change in my mentality. After stumbling upon The LUNA Project whilst mindlessly browsing twitter and falling down a rabbit-hole of reading blog posts, I realised talking openly about being a young person with a chronic condition is a way to reclaim power over it and a force for good in terms of generating much needed conversation. Even writing this post is a step in the right direction for me! I also remembered, for the first time in a long time, the conversation that finally led to a diagnosis following two years of confusion over what I now know were seizures. Following a very public seizure (not that I knew that was what it was then) in the sixth form common room, I went to a cafe with a friend to talk about what had just happened. She also has a form of epilepsy and pointed out that that could be what I was experiencing, which led to a GP appointment and finally a diagnosis. Moral of the story is, without my friend and I having an open conversation about our experiences, I may have gone years more without knowing what was wrong with me and being able to get help. With these things in mind I’m on a mission to talking more with mates new and old about my condition and experiences, with hope that this mentality can help to destigmatize, educate, and also improve the already fab relationships I have with my pals.
Big love to any of you who can relate to these swings and roundabouts, and in the words of my favourite Leeds street art,
Talk More xxx
Aisling
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