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Epilepsy – More than ‘just’ seizures

By Faustine

Content note: Seizures, depression and anxiety.

A polaroid style photo of Faustin, a young black women, with the caption "Epilepsy - more than just seizures, by Faustine". This is on a light blue background with purple blobs.

I’m Faustine, I study Politics, Social Anthropology and Sociology at University and I was diagnosed with Juvenile Myoclonic Epilepsy when I was around 15/16 but started having seizures in Year 10 (about 14). My hobbies include freelance writing, reading and spending time with friends trying out every Thai restaurant in my area ;)

Although I have lots of good friends, particularly long-term ones, my seizures and epilepsy do make me lonely, regardless of how much of a brave face I put on for friends and my family. I think that there are two key things not spoken about enough when it comes to epilepsy and I hope to touch on them in this short blog post: extreme fatigue and medication side effects impacting your social life, and, epilepsy, isolation and mental Health difficulties.

Epilepsy and Loneliness

According to the World Health Organisation, about 50 million people worldwide have epilepsy). All 50 millions of us may have very different types of seizures, as well as some in common. Some of the most common epilepsy syndromes in the paediatric (children’s) age group include Benign rolandic epilepsy (BRE), childhood idiopathic occipital epilepsy (CIOE), childhood absence epilepsy (CAE), and juvenile myoclonic epilepsy (JME) (Jammoul et al., 2015). I relate to the latter; I was diagnosed with JME when I was around 15/16. This type of epilepsy syndrome typically requires people like me to take medication into adulthood as is considered a ‘lifelong condition’ (Jammoul et al,2015). Although epilepsy is one of the most common neurological conditions, there are so many types, so inevitably the chronic condition manifests differently in each of us! We also all take different medications and have different bodies so may respond to these very differently too! The epileptic syndrome I have is typically triggered by factors such as lack of sleep, certain lights and prolonged fatigue. Being a university student, clubbing and nightlife activities are rife and at every corner, but I can’t partake in these activities because there aren’t necessarily the accommodations I need at these events. I already have fatigue from my medications and therefore may struggle to stay out as late as our peers. For me, this has resulted in missing formal dinners, fresher’s club nights and the opportunities to meet new people and form strong friendship groups for the next thre. e years. This is particularly hit me when I got to university and realised a lot of people had already formed cliques and relationships as they had met at events I was unable to attend, this felt very isolating and was difficult to navigate in an already new city and my first time being away from home.

Epilepsy, Anxiety and Mental Health.

There is still a stigma surrounding epilepsy and of course, stigma surrounding mental health, so what happens when the two coexist?

I always say that society makes having epilepsy harder for me than the actual condition itself. Universities don’t always support students adequately, nightlife rarely offers inclusive spaces, and society is still full of ableism. Some of the ableism I have experienced contributes to the anxiety I have, which I never had before epilepsy. People often talk about the condition itself but not the mental health effects that sometimes occur alongside. In the UK, 1 in every 6 people will have depression. If you have epilepsy, your chance is around 1 in 3 (Epilepsy Research). People with epilepsy are at a high risk of becoming depressed, so why is this still not talked about enough? People with epilepsy sometimes feel great levels of anxiety because they never know when their next seizure could be, living with this chronic health condition can result in high-stress levels because epilepsy is such an unpredictable illness.

A personal example that I think will resonate with epileptics and others with chronic conditions, is travelling. Most chronic illnesses aren’t visible and even though there is more awareness now with things such as the sunflower lanyard being introduced and campaigns surrounding disability, travelling still makes me particularly anxious. I have side effects from my epilepsy medication such as fatigue, dizziness and feeling disorientated. I am also extremely disorientated after having a seizure too. When I'm travelling, I often worry that I might have a seizure on public transport, and I have felt unwell on transport before and was denied a seat. Worrying over society's actions when we have enough on our plates isn’t something that we should have to face. We should be able to feel safe and supported, just like everyone else travelling.

To conclude, we need to start looking at into how mental health difficulties and this chronic neurological condition can be interlinked, so that we can improve quality of life and offer adequate support to those who need it the most. If you are struggling with your mental health I would say please talk to someone - whether that be someone inside your school, college or university or an external person. Helpful charity links – The Mix: 08088084994 or Shout: text 85258.

This is a heavy topic, and if you or someone you love is living with epilepsy then here are a few things to bring some joy. Her are two songs I like to listen to that make my day a little brighter when I’m struggling: Grateful By Mahalia – her voice is so soothing! And finally, Peng Black Girls By Enny and Amia Brave.


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