To help raise awareness of epilepsy and support others living with the condition, Laura has shared her experiences of living with epilepsy….
When I was 13, I had an intense headache for 2 days. On the 3rd day of having this headache, my mam, heard a noise from my room and found me “asleep”. She tried to wake me but couldn’t and was seconds away from calling an ambulance when I started to respond.
She asked me what day it was - I had no idea; I barely knew my name – so off to the hospital we went, with me still in my delirious world. Little did I know that that was the beginning of 10 years of external and a whole lot of internal struggles.
It was a while before the big word of EPILEPSY was said – there were a lot of tests, and another two seizures (one of which came during a car journey while we were abroad – not the most fun holiday memory)! To be specific, I was diagnosed with left frontal lobe nocturnal epilepsy – a diagnosis that means I still take supplements to this day to help me fall asleep, because of the fear I developed of having a seizure while I sleep.
Following my diagnosis, the seizures became so uncontrolled that I missed all my second year at school and most of my 3rd year. I was told it wouldn’t be possible to pass the Junior cert given the time I’d missed – but I studied between the constant disruptions and not only did I pass, I passed well!
This turned out to be the norm of my secondary school life – in for a day or two; sometimes missing weeks at a time – and feeling completely out of place every time I was there because I didn’t even know what chapter we were learning. Outside of the effect on my academic life, I also missed lots of school trips, Christmas parties. the secondary school “drama” and so much else.
Thankfully, somehow, someway I did well enough in my Leaving Cert to get my dream course of veterinary nursing. I wish the seizures had stopped there but my college life followed the same traits as my secondary school life - in for 2 days out for 3 etc, and rather than looking forward to them, I dreaded big holidays or events coming up in case I would have a seizure and have to miss them. Getting my degree was a challenge but I go the damn thing, with my epilepsy in tow.
I’m turning 23 soon – and I have landed a great job where I’ve been working for about a year now. Again, I wish this meant the seizures stopped but at least once a week, I have a seizure. This means despite being employed full-time, I’ve been there maybe half of that time. I know everyone doesn’t have this experience, but I don’t know how I got so lucky to have such an understanding employer – but I did.
While it’s great to have someone so understanding, its hard to explain the embarrassment, guilt and shame that can come with this – wanting to be at work but not being able to and having to make a phone call that I know they won’t be surprised at; leaving friends and colleagues short staffed; hearing about what I’ve missed; finding out that a dog I was caring and rooting for has had to be put to sleep before I could get to say goodbye.
In short, seizures are a bitch! They’re frustrating and painful, both mentally and physically – but for me I think the mental struggle can be the most impactful aspect of epilepsy.
I feel being so isolated at such a crucial development age ruined me - I dove into a deep depression that still rears its ugly head when I can have a bad week seizure wise. If I wasn’t watching TV in bed, I was watching tv on the couch. I know to some this may sound ideal but think about doing that for months on end, barely speaking to anyone.
My saviour was my best friend Sophie who - when I was well enough - would come into town with me on a Saturday and walk around with me aimlessly just so I’d have something to show for my week.
In the end, spending so much time alone, staring at the same four walls managed to screw my head into believing I was disgusting, I hated myself, especially physically yet I spent hours staring at every part of myself in the mirror. Are my arms getting bigger? Was that stretch mark there before? This developed into an intense mix of eating disorders that took over my life along with the seizures. If I wasn’t sleeping off a painful seizure, I was chugging water to tell myself I wasn’t hungry or hugging a toilet after every meal. All of this combined I was ready to give up, I didn’t care anymore, I had no life. If it weren’t for my family, I wouldn’t be typing this.
I know this is a long read and I’ve probably strayed a little bit from what I was originally going to share - but I’ve never been concise! But my main point to this little life story is that epilepsy is a horrible condition in itself - but the mental effects can also be overwhelming and often overlooked, and I feel it’s just so important to be aware of. For years, I felt like I was crazy for feeling that way.
My seizures are uncontrolled. If you shook me, I’d sound like a box of tictacs. I know everyone in my chemist on a first name basis. I’m labelled drug resistant and my Doctor is discussing surgery with me – which is a terrifying prospect.
I’m all these things and while I can’t say I’m healed emotionally, I’ve learnt to accept that I have epilepsy. I can’t help having this disability and I didn’t choose this BUT I’ve learnt to navigate it the best I can. I’ve overcome the challenges that the condition has thrown at me; I’ve earned my degree and got myself a fantastic job within my degree field. I can’t blame myself when I can’t show up for something that I did not choose, but the difference now is, I TELL and talk to the people around when I’m feeling the guilt, shame, frustration and emotional impact that can come with this condition, and I feel this has helped me keep moving forward.
I recently got the phrase “How lucky are we” tattooed on my arm as a reminder during the dark days that despite my problems, I have so many things to be grateful for. I have two legs and two arms that work, I have friends who love me and family that love me more (despite the number of lifts I require 😊).
Every time I properly come around from a seizure these days, I look down, I reject as much guilt as I can, remember what I’ve written above and I tell myself, How lucky are we.
I hope reading about my experiences, approaches and feelings towards my life with epilepsy helps someone out there who may be feeling the same and experiencing the same struggles. Remember, you are not alone – there’s literally thousands of us out there so speak to those closest to you or reach out to Epilepsy Ireland if you need support or information.
Thank you for reading.
Thank you, Laura, for sharing an incredible personal insight into your life with epilepsy that we have no doubt will be inspiring to all those who read it.
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.