We caught up with one of our young reps who has recently taken on the role as Young Trustee. Annie is 23, lives with her boyfriend of 10 years and works full time in e-mail marketing. It was great to hear about her experiences living with epilepsy, her aspirations and how being involved with Young Epilepsy has made a difference to her life.
Q) I'm going to ask you a couple of questions about your epilepsy. First of all, when were you first diagnosed and what type of epilepsy do you have?
A) I was first diagnosed with epilepsy when I was eight years old but I think I’ve had it since birth because I've always had kind of weird seizures. Back then I had more complex partial seizures. I don’t fall and convulse. But sometimes I lose my memory from it. Nowadays, it's more absences since my surgery in 2019 and better medication.
Q) How is the management of your seizures?
A) It’s got better since I had surgery on my temporal lobe but I still have seizures post-surgery. They've changed my medication recently. I’m now having more seizures than I was, but I think that's because they need to figure out the right dose of the medication.
Q) That must be quite frustrating for you to have surgery and then for things to get worse.
A) Yeah but it was worth a shot. Even though I'm having more than I was after surgery, I'm still having less than I was having before surgery. So it was still worth it.
Q) I'm glad to hear that. How does your epilepsy affect your everyday life?
A) I'm quite lucky as it doesn't have major effects. My partner is really good at dealing with it. Sometimes I'm in the middle of gaming with my brother and my partner and I just have to take a moment. So, it can be annoying to feel like I’ve ruined the vibe. Like, if you're having a good time, and then I’m having a seizure. But they're not fazed by it, so it's fine. It's more a personal thing where I feel like I'm ruining things.
Q) It's good that they're supportive. Do you ever feel that you don't do things you would like to do, because you have worries about seizures happening?
A) It doesn't stop me doing things I want to do but the worry is there. I’ve had it for so long – it’s never going to go so I might as well still do what I want to do.
Q) That's really good to hear. Was that always the case for you or before your surgery, did you have more anxieties or feel differently about going out and doing things?
A) Things changed for me when I found Young Epilepsy. I had the surgery about six months before, in 2019, but Young Epilepsy was the turning point where I was able to meet other people and understand more. And then that feeling of not being alone anymore is what made me more confident.
Q) That's so nice to hear. What would you say Young Epilepsy was able to provide which helped with that turning point?
A) Some family members have epilepsy so I had people growing up who would understand and I could talk to but outside there was one or two people I can think of, but we didn't talk about it. At Young Epilepsy it’s that feeling of community and meeting other reps and even though we don't all have the same seizures, it's hearing other people's experiences. You can relate to so much of it no matter what kind of seizures you have.
I met a lot of people in school and jobs who were scared of epilepsy so it's really cool to see people who are OK with it.
Q) So let’s talk about you and Young Epilepsy. What is your current role at Young Epilepsy?
A) I've been a Young Rep since January 2020 but I've recently become a Young Trustee. I'm honoured to have been selected to be one - it's really cool to see how things work.
Q) What do you do for each of those roles?
A) The Young Reps have regular meetings where we can give our opinions and learn about things that are going on. I've had the chance to lead interviews - I did one at Great Ormond Street Hospital with a neurosurgeon. It was really cool to see the perspective of the surgeon because I've had my surgery. I've written blogs as well, which I like doing and I led a day on the Instagram page during National Epilepsy Week.
It's opportunities you wouldn't get, like during COVID, I got to talk (over zoom) in a Parliament meeting about my epilepsy. I had to talk about my transition journey from paediatric to adult hospitals - what it was like for me and how it affected me.
As a trustee, I get to meet other trustees and understand how the charity works overall. The fact they want our opinions is really cool because when it comes from someone with epilepsy, it's different and valuable to have that side of it.
Q) What made you decide to take on the roles and what do you gain from having them?
A) I originally found the charity through a focus group they did in Birmingham where they were talking about the Channel for the first time. They were setting it up and they wanted people's opinions on how it should work and what should be included. I liked the idea of having more input.
I care so much about children and young people. I've grown up with epilepsy and I know the sort of things I would have wanted to do differently or different support I could have had. I thought it would be really cool to suggest it or have some contribution.
It gives me a purpose to do things. I feel like everyone’s on their own life path and this is giving me something unique for me to do. I want to advocate for epilepsy and it's inspiring to see everyone else and be valued.
Q) Do you think that it would have been useful to have known about Young Epilepsy sooner.
A) Yes because things like stories from other people with epilepsy are really valuable and I didn’t see that before. The things this charity can do and the advice they can give like on the Channel and the case studies and things like that. Having that, even if you don't know the people in real life, you can at least read about it and know you're not alone.
Hearing about different people's experiences is inspiring as well because some people’s seizures are potentially life threatening. I want to support them.
Q) So how has Young Epilepsy helped you and what difference has it made to your life?
A) The main thing is giving me confidence to put forward my own ideas and do the things I want to do. The meetings are really valuable. The most recent one we had was about what we would change about the NHS booklets and you can just say whatever and like have that freedom.
Q) What would you say are your biggest challenges living with epilepsy?
A) I still deal with coming to terms with the fact that this is forever. There can be moments, whether it's just after a seizure or just even moments where you just think too much and it's like I’ve got to deal with this. I try not to let it faze me but little things like sometimes, I’ll see case studies of people’s seizures stopping and it makes me emotional because I don't think that'll ever be me and that's fine but it's hard to think about it sometimes. For 12 weeks after my surgery, I had no seizures and I was like, whoa, is this life now? And then I just had one and then they just came back - few and far between at that time. But still, I was like, oh, well, the streak was good while it lasted.
Q) How did you feel when you had that first seizure after your surgery?
A) It was a huge let down because it's how you feel in between seizures as well. I didn't even notice it was there until after but there's almost this kind of weight sometimes. Like I've been having clusters of seizures last week. And it's like there's this weight on your head, like as if you're waiting for it to happen or something. And I didn't even have that for 12 weeks so having that first one it was pretty rough.
I find it hard to speak about but my boyfriend is really good - he knows there's nothing he can do but he'll listen and that's all I want really. I know no one can do anything about it.
Q) If you could change anything for children and young people living with epilepsy, what would it be?
A) I would try to give more understanding that it could be forever. As a young person, they give you so much faith in medication and then sometimes that doesn't work. I would prepare people for that because it's hard to deal with.
The other one I thought of is for parents or carers of people with epilepsy not quite knowing the best way to deal with things. I think they should be told about the heavier things like SUDEP or how mental health could affect the child. Give the parent or guardian things to look out for - I feel an adult can deal with those kind of things better than a young person especially if they've just been diagnosed and they're still trying to figure out medication. It’s a lot for the kid to deal with.
