Four students

#StudentSeptember – Ella’s story

Ella was just 19 when she experienced her first tonic-clonic seizure.

She shares how she felt when she was diagnosed and the challenges she faced being diagnosed with epilepsy during her first year at university.


How did you feel when you were first diagnosed with epilepsy?

I was first informed of my epilepsy diagnosis in the A&E on the day I first had my seizure.

At first, I was a bit confused, but I was quite calm about it. It took about a week or so for the diagnosis to sink in.


What type of seizures do you experience and how does it affect you?

I typically can experience tonic-clonic seizures – this type of seizure causes me to lose consciousness, seize, and shake for a couple of minutes and then I fall asleep.

When I wake up, I become a bit confused as to why I am lying down, but I quickly realise what has happened. This event makes me feel extremely tired and low for a couple of days after.


What challenges have you faced since being diagnosed with epilepsy?

For me, adjusting to medication can be, and still is, very challenging – I can only speak from my own experiences though as every individual with epilepsy has different treatments that suit them.

I am quite lucky in the sense that I have not had to change to different brands of medications regularly, but my dosage of my current medication has changed a few times.

In my case, I can experience fatigue, loss of energy and motivation as well as problems with concentration.

Anxiety is quite a big struggle as I struggle with not knowing what will happen in the future. Will I have another seizure? Can I do things that I have always wanted to achieve? Why do I have no motivation to do the things that I love?


Has your epilepsy affected your university studies? If so, in what way?

It was not ideal to get diagnosed with epilepsy within the first month of my first year at university.

The thing that affected me the most was probably not being able to come in regularly when I felt unwell – this impacted the quality of work that I produced as well as getting to know my new university friends properly.


What kind of support have you received from your lecturers and the university as a whole?

My lecturers were very accommodating as they let me do things at my own pace and allowed extensions to module deadlines.

I have also registered with my university’s disabilities service in order to get extra help with various aspects of my studies.

I highly recommend anyone struggling with epilepsy to get in touch with the staff at their higher education institution as asking for help is nothing to be feared or to be ashamed about.

These kinds of services are there to help you and your journey through education.


Being diagnosed with epilepsy during your first year of university, how challenging was that and how did you feel?

Being diagnosed during my first year of university made me feel robbed of the “university experience”.

I felt that I had worked so hard for so many years to get to this stage only for it to just crumble in a span of an hour on one random Monday after classes.


What do you feel universities can do to provide support for people living with epilepsy?

I think that one of the most helpful things that can benefit people studying whilst managing their epilepsy is flexibility.

Having many options for taking a class, such as being able to attend lectures and other speakers programmes online, and providing exam and assignment extensions.


What advice do you have for any current or potential students with epilepsy?

My advice would be to take it one day at a time. I know that this seems a bit cliché, I still struggle with this, but it will get better.

If you are currently thinking of studying at a higher education institution – do your homework.

I have not had to worry about managing a disability and applying to my chosen course but try to be as truthful as possible in your application and with yourself.

If you really struggle with the idea of applying, talk to your guidance counsellors or careers advisers at school.

Do what you are most comfortable with but do not let your passions become unimportant because of your condition.

You have the right to have access to the same materials and opportunities as any other student.

Do not be embarrassed to tell your lecturers and friends about your struggles. They can help you in so many ways.

Most importantly, be kind to yourself. I should stick to this myself and I know how difficult this is, but honestly, you are a warrior.

You are managing your studies and your condition, fighting to achieve great things and follow your dreams. You can do this. Keep going.

Everyone is proud of you. If you have reached the end of this article and are reading this sentence, I am proud of you too!