Gilliane has shared her story with us for National Epilepsy Week, charting her journey with the condition and the challenges it has brought and outlining her approach to navigating these challenges that epilepsy can bring…
Epilepsy has had a profound impact on my life. I remember when it all began during my leaving cert year in 2013—a particularly stressful time when I believed my entire future depended on those exams. Although I wasn't diagnosed with Epilepsy at that time, the seizures started occurring then. Thus, I faced this challenging situation without any medication or understanding of what I was truly experiencing.
The condition significantly affected my school attendance; I found myself in the hospital more often than in class. MRI scans, CT scans and appointments with my neurologist became parts of my life. I remember arriving late to school because I had a seizure at home or needing to leave early due to a seizure at school. Often, my aunt or one of my parents would come to pick me up, which left me embarrassed thinking "A 6th-year student getting picked up from school?"
My seizures happened during classes, and I felt guilty for causing disruptions, but I tried to hide those feelings. My friends even took turns recording a video whenever I had a seizure at school or class so I could show those videos to the neurologist. My phone had more videos of me having a seizure rather than videos of good memories.
The experience also significantly impacted my ability to learn effectively. I struggled to grasp new concepts and often had trouble remembering the material I studied. This diverted my overall academic progress, as I found it increasingly challenging to connect ideas and retain information.
Luckily, I had my own exam room and supervisor for the leaving cert, except for art. However, unluckily, I had an absence seizure during the art exam and started playing with my paper, flipping it repetitively. My friend noticed and alerted the supervisor. Thankfully, I was allowed to continue the exam. Although I didn’t do it on purpose, I found myself apologising for my seizure.
Due to my circumstances during the leaving cert year, I decided to drop to all Ordinary levels, resulting in lower points. Therefore, receiving an offer from DCU for a Journalism course was a shocking yet uplifting surprise. It significantly boosted my confidence and instilled a sense of trust in my abilities again. I then completed a FETAC Level 5 Journalism course for information and a good start before starting a Level 8 Journalism. However, I had another seizure during exams and was still undiagnosed, which caused me to once again lose my trust in my abilities.
After struggling to get a final diagnosis in Ireland, I headed to the Philippines in June 2014. I stayed there for nearly six months, only to find myself hospital-hopping rather than enjoying a sunny holiday. I battled multiple absence seizures almost every day, turning what was supposed to be a vibrant experience into a nightmare. Yet, through it all, I remained resilient and determined to overcome. Thankfully, after a long while of puzzlement, I was finally diagnosed.
At first, I faced challenges in taking my medication because I was in denial about my condition, struggling to accept that I would need to take medication forever.
Soon after, I discovered I was pregnant, which required me to decrease my medication dosage. This change led to an increase in my seizures as I wasn't receiving the dosage I truly needed. Nonetheless, I am grateful that my pregnancy went well through it all.
Then, another battle occurred. When I returned to Ireland, I made the difficult decision to let go of my Journalism course for a much-needed break. I grappled with judgement from others and overwhelming feelings of self-pity and self-doubt. However, let's be realistic—being diagnosed with a chronic neurological disorder brings its own set of challenges. Acceptance and adjustments are often the crucial first steps many people must confront on this journey.
Afterwards, I learned to change my mindset and keep moving forward. Now, I am a Registered Nurse in Intellectual Disability (RNID). However, due to my seizures re-occurring, I decided to temporarily step down to a healthcare assistant role to prioritise my health. While my health went downhill, my performance as a nurse also went downhill. Once again, I find connecting ideas and retaining information increasingly challenging, which are critical skills nurses must have. At the same time, I am currently in the process of changing my medication, which may have contributed to an increase in my seizures. My previous medication caused me to experience severe vertigo. Fortunately, I was able to easily contact my epilepsy nurses and request a new medication.
Living with Epilepsy presents its challenges, and it is often misunderstood. Based on my experiences, I observed that many people assume that Epilepsy means collapsing or convulsions with foaming at the mouth—thoughts I had myself, which heightened my fear after my diagnosis.
There are moments when Epilepsy can feel overwhelming, both physically and emotionally. Epilepsy is an ongoing challenge. I usually experience absence seizures and have infrequent atonic or tonic-clonic. As I was typing each word of my story, I felt the weight of the possibility that a seizure might occur. It's a constant concern. However, I'm relieved to say that I am 31 days seizure-free, and that already brings me a sense of pride and hope.
Reflecting on my journey, I realise I'm coming full circle to where it all began. In my early days, seizures caused significant obstacles that disrupted my performance and daily routines, often leaving me feeling overwhelmed and frustrated. However, this time around, I have chosen to face these challenges with a positive mindset. Rather than viewing seizures as setbacks, I now see them as opportunities for growth and self-discovery. Embracing this perspective not only enriches my ability to cope but also fuels my determination to navigate life's unpredictable twists with courage, optimism and acceptance. I will not let Epilepsy limit my life.
Thank you Gilliane for sharing your experiences with us this National Epilepsy Week, which we know will resonate with many reading.
If you or your loved one need any information or support about epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. Visit the ‘Our Local Service’ page on our website to find details of your local Community Resource Officer.