I Am Not Epilepsy - I am Rebecca
Hi, I'm Rebecca McGhee1, and nine years ago I was diagnosed with Idiopathic Generalised Epilepsy2. I'm the IBE Golden Light 2019 Winner3 (for Europe), Writer of Epilepsy Warrior1, a Volunteer for Epilepsy Connections4, and I live in Falkirk5, Scotland6.
Favourite food: Pasta
Random fact: I’m a qualified horse-riding instructor
At first, I found my diagnosis a lot to take in, but recently I have found my way of coping. For me, doing something positive always makes me feel better so I try to use my own experiences of living with epilepsy to help others.
I’m not going to lie, I’m not happy about having epilepsy. I can’t drive or stay up too late and I have to get up at 7am to take my medication and have breakfast (even on the weekend) plus it also makes finding a job a lot harder.
But as rubbish as those things are, there are also many things that if I didn’t have epilepsy I would have missed out on. I wouldn’t have worked with epilepsy charities, like Epilepsy Connections, to promote epilepsy awareness and to take part in fundraising events. Epilepsy has given me a number of opportunities to help and support other people who are living with the condition and to help spread epilepsy awareness.
I have various different types of seizures. These range from absence11, to focal11, to myoclonic11, through to tonic-clonic11. Living with epilepsy has made some things challenging for me, but I know that my friends and family are always there if I need them. I have had a number of injuries due to my seizures, including broken bones, cuts and bruises, broken teeth and even a ruptured spleen12! And I’m a regular at our local emergency department and have visited many more when having had a seizure away from home, but I don’t let it stop me from being me. Because I am not Epilepsy, I am Rebecca:
I believe it is important to spread awareness and teach people about epilepsy as there are so many people who make assumptions through lack of knowledge. I’d like more people to understand that epilepsy is actually quite common, to know what it involves and to realise that it although is a very complex condition those that have it are just ordinary people. I think that people should be taught from a young age what to do if they see someone having a seizure, not to panic and not to be scared. Seizure safety and epilepsy awareness should be included in first aid courses.
I had my first seizure, a tonic-clonic seizure, ten years ago when I was thirteen years old. I wasn’t diagnosed with epilepsy until a year later, and at that time there were no local support groups for young people and epilepsy wasn’t very well known by any of the people I came across on a daily basis. At school, we could have done with a lot more epilepsy awareness because people didn’t understand what epilepsy was and why I didn’t fall to the floor when there were flickering lights (my epilepsy isn’t photosensitive and despite me telling people this, they always wanted to keep me away from flashing lights…). People would avoid me because they were scared that I’d have a seizure and that they would have to ‘deal with it’.
My diagnosis would have been made much easier to cope with if there had been a support group for young people in my area; I would have been able to make friends with other people around the same age as me and talk about what it was like living with epilepsy - sharing our stories and experiences.
My experience of a diagnosis without any peer support from people my age, going through the same things, experiencing the same problems and difficulties; it was hard. It would have been a lot easier if I had these things. So; I decided to work with Epilepsy Connections to help to start a ‘Young Adults Support Group’. Since the first Support Group meeting, a number of people have joined the group and we are all very supportive of each other. One of the best things that I feel has come from setting up this support network, is the friendships that we have all gained, friends who understand what it is like to be a young person living with epilepsy. I no longer feel like the odd one out within my friends.
We also have an online support group where we keep in touch most days, sharing what we’re going through, the highs and lows and cheering each other up when one of us has a bad day. We meet monthly for pizza, chat, and support from our Epilepsy Connections Fieldworker, Ewan. We have access to other activities through Epilepsy Connections too including opportunities to volunteer at events across the country. For example, I regularly volunteer with Epilepsy Connections Education and Outreach Projects15, visiting schools and other events to teach young people about epilepsy, how to help in the event of a seizure, and overall just making the next generation more epilepsy aware.
As a group we are determined not to let epilepsy stop us and have taken part in the Tartan Warrior OCR16 (Obstacle Course Running) event four times now and are looking forward to taking part again in March. We marshal the obstacles throughout and are then able to run the OCR course at the end of the day, spreading epilepsy awareness, telling people about Epilepsy Connections and fundraising for the charity all at the same time.
Working with Epilepsy Connections has been a huge turning point in my life, not just regarding my Epilepsy but also my mental health as well. I have become much more open about my Epilepsy and have had such a confident boost since I started working with Epilepsy Connections.
I found my diagnosis quite hard to come to terms with at the time and feel that had there been any support groups, similar to the one that Epilepsy Connections helped me to set up, it would have been so much easier to take in the change in lifestyle and learning how to live with epilepsy on a daily basis.
As well as working with Epilepsy Connections, I have recently been working with the International Bureau for Epilepsy17 (IBE) as I received the Golden Light Award3 this past summer. Since receiving this award, I have met so many wonderful people living with epilepsy, family and friends of those living with epilepsy, and also many people who are working in the field of epilepsy research. These people have been an inspiration to me to keep spreading Epilepsy Awareness, to do as much as possible to teach people about epilepsy and to be there to help and support other young people living with epilepsy.
1. Epilepsy Warrior: www.epilepsywarriorsite.wordpress.com
3. IBE: https://www.ibe-epilepsy.org/rebecca-mcghee-scotland-ibe-golden-light-award-winner-2019/#targetText=Rebecca%20McGhee%2C%20Scotland%20%E2%80%93%20IBE%20Golden,International%20Bureau%20for%20Epilepsy
4. Epilepsy Connections: https://www.epilepsyconnections.org.uk/
5. Visit Falkirk: http://www.visitfalkirk.com/
6. Scotland: https://www.scotland.org/
10. Instagram: https://www.instagram.com/mrshinchhome/?hl=en
11. Calderdale & Huddersfield NHS Foundation Trust: https://www.cht.nhs.uk/services/clinical-services/neurophysiology/24-hour-ambulatory-eeg/#targetText=An%20ambulatory%20EEG%20is%20a,doctor%20in%20diagnosing%20your%20condition.
12. Epilepsy Sparks: https://www.epilepsysparks.com/epilepsy-learning/different-types-of-seizure
15. Epilepsy Connections: https://www.epilepsyconnections.org.uk/services/epilepsy-awareness-in-schools/
16. Tartan Warrior: http://www.tartanwarrior.com/
17. IBE: https://www.ibe-epilepsy.org/