#EpilepsyDay 2024 - Lia's Story

In advance of Epilepsy Day, we were sent this fantastic piece by UCC student Lia, which charts her journey with condition and shares an important message to all those living with the condition…

My name is Lia Hipwell, and I was diagnosed with frontal lobe epilepsy at age 16. I suffered from Tonic-Clonic seizures, and I still suffer from Focal Aware seizures. 

When I developed epilepsy, my entire life changed. I woke up one morning to a friend saying I had a seizure in my sleep, and I had no idea what they were talking about. My knowledge on epilepsy was extremely limited, I had believed you are born with epilepsy and that it was only caused from flashing lights. This can be a common misconception when epilepsy is mentioned, despite the percentage of photosensitive epilepsy being quite low. 

My memory is hazy around this time due to the seizures, but when I had a second seizure I was scanned and diagnosed with epilepsy. I felt numb at first, not really processing the hard truth that your life must be adjusted when you are living with a lifelong health condition. It was no longer a case of not drinking enough water causing a headache, forgetting some tablets in the morning being no big deal, and being able to skip some sleep. I now knew that if I missed a singular dose of my medication I was likely to have a seizure, that if I didn’t drink enough water I was at risk of a seizure, that if I didn’t sleep enough I was at risk of a seizure, and the list goes on.

Now while this may come across as all negative, I’m writing this today to any person living with epilepsy that may feel hopeless, lost, and anyone who feels like giving up on all the amazing things that can come in life, even with epilepsy. Despite adjusting to life with epilepsy being difficult, it doesn’t mean it needs to hold you back. 

When newly diagnosed with epilepsy I was ashamed, I only told extremely close friends and family - I was not open. I didn’t want people to be afraid I would have a seizure around them, I thought that by me simply existing and having epilepsy I would be an inconvenience to others. I was wrong in thinking this, and to any newly diagnosed person reading this who may feel the same, I promise this can change with time. 

My worst fear was having a seizure in public, I was more concerned with people seeing what I look like having a seizure rather than my actual safety. No one deserves to feel like this, and when this fear came true with me having a seizure in work and school, I realised people only cared if I was safe. Not what I looked like. 

I experienced Tonic-Clonic full body seizures for nearly two years. My seizures were quite aggressive, I injured myself multiple times when having these seizures and would typically get bursts of seizures, having three or four in a short period of time. My seizures along with the memory loss and fatigue that came with them interrupted my leaving cert cycle significantly. I could not keep up with my school work while having seizures multiple times per month and suffering from memory loss.

I will always appreciate the support of my Principal and Vice Principal at my school as they consistently supported my health issues and tried their very best to make completing my leaving cert possible. 

Unfortunately, with the amount of school work missed and with how far behind I fell, this was no longer realistic. When I knew I wasn’t going to complete the leaving cert, it extremely affected my mental health. I don’t believe the impact that epilepsy can have on mental health is talked about a lot, and I think it’s crucial that individuals with epilepsy speak about these issues to someone they trust, as it is ok to be upset about some of the realities that can exist when living with the condition. What’s important is not to let it completely submerge you, and to reach out when you need help. 

I had always wanted to study psychology in the hopes of becoming a psychotherapist, as I am passionate about treating and aiding individuals experiencing difficulties with their mental health. This dream felt as though it had to end when I could not complete my leaving cert. I feel the way the leaving cert is painted in Ireland is flawed, it is seen as the be all and end all. This is not the case, and I again want any person living with epilepsy reading this who may be under a huge amount of pressure, who may feel their health is not stable enough to complete their leaving cert or further education, that there are other ways you can achieve your dreams. 

In September 2021, my Tonic-Clonic seizures were controlled after nearly two years consisting of trialling medications. I convinced myself we would never figure out the right medicines for me, but I am beyond grateful that my neurologist did. It was then in September of 2022 that with some convincing from family members, I applied to study Psychology & Social Studies in the Cork College of FET. This was a level 5 course, and the requirement was a leaving certificate. I was confident that I would not be accepted for this course due to these requirements. In my application I explained I had no leaving certificate due to how difficult my epilepsy was at the time, and to my surprise I was offered an interview. 

Following my interview, where I wrote a personal statement explaining my struggles with epilepsy and my passion for psychology, I was accepted into the course. My confidence was not high when starting this course, I was worried I would not be able to do it due to still experiencing regular Focal Awareness seizures, along with the fact I had no leaving cert. I got through the year, and although it was not easy, my epilepsy did not stop me. I knew this was my opportunity to get into a university and study what I’ve always wanted. I was terrified when my exams came around, again having the mindset that because I had no leaving cert I wouldn’t do well in my exams. The course was assessed by a combination of assignments and exams, and I ended the year with receiving a distinction in every module, despite all of my self-doubt and worries. 

My results allowed me to be accepted into a BA in Applied Psychology in University College Cork, which is where I am studying now. I will always be grateful to Cork College of FET for giving me a chance to pursue the career I have always wanted, and for the continued support in University College Cork . 

I am no longer ashamed of my epilepsy. I am open to everyone when discussing my condition, in the interest of my safety, spreading awareness on how to help someone having a seizure, and how to look out for seizures. The transition from being ashamed to open was a slow process, but I did get there. I had a tattoo done on my chest that reads “With Struggle Comes Strength” including the epilepsy ribbon with angel wings and a halo in the middle. The angel wings and halo are to incorporate my beautiful aunt, Carolyn Hipwell,  who sadly passed away at the age of 8. Carolyn also had epilepsy.

I believe the struggle that can be involved with epilepsy gives you more strength than you can even imagine. It is not a condition anyone wants to have, but the strength, perseverance, and sheer determination of people who live with this condition, who get up everyday and live their life to the fullest is something to admire. And for those not at this point yet, please do not worry. If someone told me when I was diagnosed at 16 that at age 20 I would have a tattoo specifically about epilepsy on my chest, and that I would be completing a psychology degree, I would not have believed them. 

My advice to anyone living with epilepsy is to speak to people when you are struggling, believe in yourself, and trust that you will someday recover either mentally, physically, or both.

Having epilepsy does not mean you cannot achieve what you want in life. It does not mean all opportunities will be taken from you. Apply to that job, course, hobby, whatever it is, whatever the requirements are. People can be kind in this world and understand your condition rather than judge it, and if you feel hopeless and lost right now it’s okay, just try to remember that things change and epilepsy does not mean everything you want in life is unachievable.