Thank you to Christina Olivant for sharing her experiences of living with epilepsy.
My first absence seizure happened on Christmas Eve 2016, during my first watch of “The Holiday” with my mum, dad, and sister, when I got up to go into kitchen.
Suddenly I was in the hospital and with everyone as confused as I was about what had happened.
My diagnosis took a while, and after multiple scans and hospital appointments, my consultant came to conclusion that I had epilepsy. However, as I was only 12 at the time, it could have been juvenile, and I might grow out of it.
This all took place during my first year of high school, as I was adjusting to new friends, teachers, and surroundings. Therefore, the added stress of dealing with a sudden brain disorder didn’t make these adjustments any easier, particularly due to the randomness of my seizures and auras (warnings that a seizure might happen). The unpredictability also increased my anxiety throughout high school, as I was embarrassed by my epilepsy, as my seizures developed into tonic seizures that drew more attention to me, such as me falling from a chair in class.
With anxiety and stress being such a prominent trigger for many people’s epilepsy, this highlights the cruel cycle that people get stuck in as your epilepsy makes you anxious and your anxiety causes your seizures.
While I tried to tackle both issues throughout high school and sixth form, I knew going to university would require another level of support and self-determination.
I had been lucky enough to apply for PIP (Personal Independent Payment) and qualify, allowing me to afford Ubers around York, as I am not supposed to walk by myself in case, I have a seizure.
However, in my first year I was extremely resistant to this “rule” as even though I now had some independence by being at uni, I felt like I was still being treated like a child who had to ask someone to walk with them to the shop or a lecture every day, and my paranoia of feeling like a burden meant that I walked there and back to uni almost every day in my first year.
The cycle of anxiety, alcohol, and seizures
Despite the obvious risks alcohol brings to epilepsy, I started drinking once I turned 18, and started going out more and more with my friends. I went out almost every night during Freshers Week in my first year at Uni, blacked out a couple times and had the paramedics called on me once at our first Halloween Party. Most of this was considered usual student behaviour, as I was doing this with all my friends and “just having fun”. However, I wasn’t telling people that I was drinking heavily by myself due to my social anxiety, and therefore using it as a coping mechanism. This habit of drinking by myself throughout the week, and going on a night out at the weekend, sparked a pattern within my seizures and showed how alcohol had become a trigger.
I had been keeping track of my seizures for a while, and during this period, the notes next to almost every one references drinking and loss of sleep due to a night out.
For example, “24th September- Walking to my accommodation after getting drunk during the night and only getting 3-4 hours sleep, Later in the day on with Mum and Dad, Had a bad headache and was really tired, Combo of stress, tiredness, alcohol”.
Regardless of the obvious pattern emerging, I was struggling so much with my mental health that I didn’t care how much it was affecting my epilepsy, even though the increase in my seizures was also making me more anxious and depressed, leading to me drinking.
At the time, I was unaware of this cycle I had trapped myself in, and definitely in some denial of how bad my drinking had gotten. All I wanted to feel was normal and like I could do the same things everyone else was doing without having to worry about having a seizure, taking my meds, having an aura, and just embarrassing myself and ruining the night. In my eyes it was worth harming my mental and physical health, to feel like everyone else.
Recently I have also started having tonic clonic seizures, having 3 within the past 2 years. In two of the three occasions, I was heavily drinking the night before, further suggesting that alcohol is a likely trigger for one of my seizures, and one of the more intense and harmful seizures as well.
The most recent seizure was particularly traumatic, as I was vomiting for the rest of the day and felt an increased level of guilt for getting so drunk the night before and causing my mum to deal with me having one of those seizures. My consultant often asks for videos of my seizures so help with the understanding of my epilepsy, so my mum recorded the tonic clonic I had at the end of December.
This was the first time I have ever seen myself having that kind of seizure before, and I don’t think I was prepared for it. I’ve always been embarrassed by how I act whenever I start having an absence seizure, causing anxiety at being in new places or meeting new people, as I worry about having a seizure and acting weird. However, the tonic clonic is the more stereotypical type of seizure that people often think of when they hear the word “epilepsy”, and I couldn’t help but breakdown watching it and feel awful for my mum crying out my name repeatedly.
Healthy Coping Strategies
Regardless of me struggling with this “cycle of anxiety, alcohol and seizures”, there are healthier coping strategies that I find improve both my mental and physical health.
For example,
- If you are like me and must stay inside more often, due to not being able to walk alone, then find a hobby that you really enjoy that can be done in your house/bedroom. For example, I’m quite creative and love drawing, writing, and scrapbooking.
- If you feel misunderstood or alone in your experiences and feelings, then try and connect to other people that can relate to you. Joining Facebook support groups or finding local support groups to meet people in person can be an amazing way to open yourself up and learn more about your condition.
- Make the most of the help that is around you in the education system and the help that you can apply for. Although it can feel like there is little help out there, there is always something that can make life a bit easier. Once I started at York St John Uni, I instantly got in touch with the Disability Support and Inclusion Team to discuss my epilepsy and create a care plan. My lecturers have also been incredibly supportive throughout my 3 years, never making me feel like my seizures were a burden or an issue if I was unable to get work done or come in.
- Try and have a laugh about it every now and then. It’s a hard balance between being insensitive sometimes and just having a laugh but being able to joke about my epilepsy and not take it too seriously has made it much more manageable for me personally. For example, I wrote a parody song of “All I want for Christmas is You” about my epilepsy and got a tattoo of “seize the day” on my wrist.
In conclusion, being epileptic is one of the most difficult things in my life, and if I could have it taken away tomorrow, I would say “yes” in a heartbeat. However, I am trying my best to adapt and feel like this condition doesn’t define or control me, while also learning to not be embarrassed by my seizures anymore. How I feel about this part of myself is something that changes every day. One day I’ll wake up and think, “let me write a parody Mariah Carey song making fun of having a tonic clonic”, and the next I’ll be crying my eyes out and throwing up after having a seizure in the car with my mum. But I’m trying to focus on the things I have control over and surround myself with amazing people that support me and make me feel loved and worth how much effort I am.
No matter how difficult things can get please always speak to someone about how you are feeling, because I guarantee someone will be able to understand or relate to you. Despite disability and invisible disabilities making you feel incredibly isolated, there is a community of people who can empathise.
Purple Circle Epilepsy Support Group York is a local support group which meets up monthly.