2 – Educating by existing – life with focal seizures

Published: June 01 2020
Last updated: October 05 2022

Rachel Batchelor, 22, has had epilepsy since she was 15. She chats about managing epilepsy as a student, taking six years to get diagnosed and working on The Epilepsy Space – Epilepsy Action’s new interactive resource for young people. As someone who has less commonly understood seizures, Rachel talks about feeling like a “walking education” to those around her.

Show notes:

Let us know what you think about Epilepsycast by emailing podcast@epilepsy.org.uk

TikTok #seizurechallenge – we are thrilled that TikTok has agreed to take down the #seizurechallenge videos.

Find Epilepsy Action on TikTok by searching @epilepsyaction

Virtual Groups – Epilepsy Action’s virtual groups are a great way of connecting with others who have experiences of epilepsy, in a safe and relaxed environment. They are open to anyone living with epilepsy in the UK who is over 18 years old. You might be living with epilepsy yourself, or you might be a parent or carer of someone living with epilepsy. Find out more.

The Epilepsy Space – an online space for people aged 16-25 to learn about epilepsy, share with others and grow in knowledge and confidence.

Rachel Batchelor, 22, was part of the group of young people who helped create The Epilepsy Space alongside Epilepsy Action. She is a student, studying for her master’s in clinical psychology at Royal Holloway University. She has focal seizures that cause her to experience an intense sense of déjà vu and nausea. Seizures leave her feeling really tired. You can find out more about focal seizures here.

She started having seizures when she was nine, but it took until she was 15 to be diagnosed. She’s had positive experiences from her school and her university, both offering her lots of support to help her manage studying and epilepsy. Everyone who Rachel has told about her epilepsy has also been really positive and supportive. That’s given her confidence to speak out more.

Rachel sometimes faces surprise from others that she has epilepsy because she doesn’t ‘look’ like she has the condition, or because she doesn’t have convulsive seizures. She feels positive that, just by existing, she is able to challenge people’s preconceived ideas about epilepsy, and help people learn more.