Today is Epilepsy Action Purple Day. Two of our students have shared their experiences with living with epilepsy at university to help raise awareness around epilepsy and the support available.
By Helen Inglis, 2nd Undergraduate LLB (Hons) Flexible Learning
The single biggest challenge of living with epilepsy for me can be summed up in one word: unknown. When I was first diagnosed, I knew virtually nothing about epilepsy, only that it seemed to have blown my happy, settled adult life to pieces completely out of the blue. I knew about it in abstract terms from seeing it depicted in books and visual media, and a couple of people at school had it – but I didn’t really know anything about it. I didn’t understand it. 18 years later, I still don’t understand it fully, not for want of trying.
The more I have learnt over the years, the more I’ve come to realise that the generalised lack of knowledge and understanding around epilepsy feeds into the stigma which still exists surrounding it and which makes it so much harder to live with. All too often when a new acquaintance learns that I have epilepsy, the expression on their face is a kind of fleeting, wide-eyed terror. Fear of the unknown.
When talking about it in the past, I have described living with epilepsy as like having a sleepy tiger in my brain. Most of the time my tiger snores away, quietly minding her own business, I get on with my life and we live with one another peacefully. But then something will happen to wake her up, any one of a number of things. A change in the weather, a change in diet, a change in medication. The onset of another illness, something as mild as the common cold. Everybody with epilepsy is different. Extreme stress, pain and tiredness are things that upset my sleepy tiger more than anything. She wasn’t too impressed when I started my Law degree at the age of 41!
Before arriving at NTU, I was very worried about how I would cope with studying with epilepsy, knowing that stress has always been a particularly aggravating factor for me. Out of politeness, whenever I meet somebody who I will be having an ongoing relationship with, a new friend, colleague or tutor, out of courtesy I will always try to remember to tell them that I have epilepsy, just on the off chance that something happens which means they need to know. During fresher’s week, the first tutor I met asked me if I had spoken to Disability Support Services yet? I said I hadn’t, as it hadn’t occurred to me. She very firmly suggested that I do so, as I wouldn’t know how they could help me until I did. Sage advice, which has turned out to be invaluable 18 months on.
I made an appointment, and had a Teams call with Eleanor Bond. She explained the various adaptations and adjustments that could be made available to me, and I was astonished. I came away from our meeting with an access statement detailing the adjustments and adaptations to be made available to me, and a clear understanding that the role of Disability Support Services is to make sure that a disability of any kind is not a barrier to a student having all the same opportunities as non-disabled students. I remember in my initial conversation with Eleanor explaining that at that time my epilepsy (and my fibromyalgia, which brings its own set of challenges) were reasonably stable, and I didn’t feel in need of any additional help. She asked me quite simply: could I guarantee that would always be the case? I couldn’t answer, and Eleanor’s point was made.
Now approaching the final term of my second year, I have had cause to be grateful for my access statement more times than I can count. I am currently adapting to a new medication and have made good use of coursework extensions and the lecture capture service to help me get over the rocky period of dealing with a new and challenging set of side effects.
The key piece of advice I would offer to other students or prospective students with epilepsy is this: you are not alone. Talk to Student Support and Disability Support Services. Don’t assume, as I did to begin with, that you won’t qualify for any help. It costs you nothing to find out! Don’t be afraid to reach out and ask for the help you need, because it’s right there waiting for you. The very worst thing you can do is struggle alone.
For help, advice and resources whilst studying at NTU, take a look at the following for sources of support.
Epilepsy Information & Advice
Support from NTU
Self-Care books in NTU’s libraries
Silvercloud: SilverCloud is our online system designed to help with a range of mental health issues.
Health and Wellbeing resources
NTSU Information and Advice service
Wellness in Mind: Advice and support for anyone in Nottingham experiencing issues with their mental wellbeing
Student Minds or Student Space
10 Keys to happiness
Mind
Papyrus
CALM
Healthy NTU 