Epilepsy is hard. Learning how to deal with it in the long term is important. While it’s not always going to be smooth sailing, focusing on the positives can really help.
To guide you through the chaos, join James, Rosie, Prof Ingrid and Dr Kaitlyn as they share their final thoughts and experiences on how to live well with epilepsy.
Remember – YOU’VE GOT THIS!
Rosie: Hi, and welcome to the final episode of I’ve Got This: Owning my epilepsy podcast series. My name is Rosie. I’m 22 and I’m from Melbourne. I was diagnosed with epilepsy ten years ago and have absence seizures.
James: My name is James, 22 years of age, living in Sydney, been living with epilepsy since I was 18.
Ingrid: My name is Professor Ingrid Scheffer. I’m an epilepsy specialist. I’m a paediatric and adult epileptologist, which means I’m a specialist neurologist who works almost entirely in epilepsy.
Kaitlyn: I’m Kaitlyn Parratt. I’m a neurologist and epileptologist working in Sydney, and I have a special interest in looking after young people and women with epilepsy as they navigate different periods in their lives.
Ingrid: Rosie, you’ve told us so much about growing up with epilepsy and beginning to own your epilepsy. What are the positives you’ve got along the journey?
Rosie: It’s shown me that I can manage things myself. Epilepsy – it can be lifelong, but it’s also part of who you are. And it’s, you know, I was able to work through it, and it’s hard. There are parts of epilepsy that are definitely hard, but, you know, the longer you sort of have it, the more you realize it. You can take control of it yourself and it’s not all negative.
You know, there are positives and people will support people around you will support you.
Kaitlyn: James, If we had to go back to that moment when we had the light bulb indicate to us that this was, in fact, focal epilepsy after a bit of investigation. What would you say to yourself? Would it be different to how you reacted at that point?
James: Oh, yes, it would definitely be different. The first, you know, cliche thought that comes into my head is, “oh, you’ll be okay”, which it really will. If I was in that position back then, it’s going to be okay. I have epilepsy. That’s fine. I’m still living. I’m still enjoying my life.
Ingrid: I think you’re beautifully showing us how confident you are and how your confidence has grown, partly by taking control of your epilepsy, managing it yourself, showing the world that you can do it and yourself. And in some ways, I guess you’re probably been more mature about all this than your friends would be in their lives. Would that be true?
Rosie: Yeah, I think so. And particularly when you’re diagnosed, when you’re maybe a teenager, people other people don’t have to deal with that with a health condition. But, so it’s something it’s different, but you realize that you can do it.
Ingrid: How do you think it will help you as an adult in life, having had to incorporate epilepsy into your life?
Rosie: It’s given me confidence that I can overcome challenges and things that may come up, you know, later in life, whether they’re work challenges or even other health conditions. You know, I’ve had this epilepsy for ten years, and I’ve been able to manage it. And so it shows that you can get through things. And if you have a support system around you, you can you can overcome some challenges.
Ingrid: Yeah, but I think in some ways you can show that you can conquer the world with this because you have confidence. You know what you’re doing. How’s it helped you in your with your friends? Is it helped you help them more?
Rosie: Yeah. Yes, it has. And it’s particularly something like driving. One of my friends also doesn’t drive, and I can empathize with those obstacles as well. And particularly my other friends who have epilepsy. You know, we talk about how we can’t drive or, you know, yeah, I had an EEG, and it was really annoying. I got glue stuck in my hair for 24 hours and whatnot.
Rosie: And so it helps sort of you connect with other people, particularly those with epilepsy. And there are a lot more people than you realize, at least that I didn’t realize had epilepsy. So it’s nice to know that you’re not alone.
Kaitlyn: How would you look over the past few years comparing the things you’d consider to be the bad things about living with epilepsy versus potential good things that might have come out of it for you.
James: Basically. Now that I’m looking back at it, maybe my lifestyle wasn’t as healthy as it is now. I’m I now I’m thinking about it really isn’t. I used to drink a lot of soft drink. I wasn’t necessarily drinking a lot of water. Maybe my sleep patterns weren’t as good as they are now. And you know, this epilepsy has really pushed me to actually be a healthier person exercising more, drinking more water and making me stronger as a person.
The fact that I can, you know, move into those situations and habits, you know, made me mature as a person because I did realize that, you know, it has to be done. You know, when you’re at a young age and you’re 18, 19, even going into your twenties, you can be a little bit immature. It really does mature and makes you stronger as a person.
Like, I’ve done this, I can do anything really.
Ingrid: You know, I think one of the really cool things about wonderful young adults like you is that you’re an inspiration and you educate the world about epilepsy. So people think of people with very severe disabilities with epilepsy, but they don’t realize that regular people like you and me can have epilepsy. And you’re like sort of an ambassador because you show people just how wonderful and functional you can be and confident and live a life.
And that’s got to be congratulated.
Rosie: Yeah, Thank you. And epilepsy doesn’t have to control you. You know there are… it obviously can have impacts sometimes, but it doesn’t have to rule your life and it can if it’s a part of your life forever, that is okay and it can – you can own it – It doesn’t control you. So yeah.
Kaitlyn: And before this, do you think you’d been through any really big significant life challenges, be them medical, psychological?
James: Yeah. So this was my biggest, you know, life challenge. I also took it about this may have happened for a reason to make me stronger as a person. This is just one of many battles that you’re going to have in life. It is not the only issue I’m going to run into, and it’s almost… I feel as if it set me up to deal with things that are coming in the future, not medical-related or health-related, you know, just challenges and becoming stronger as a person and then building a process, you know, methods to, you know, push through things.
And it really – I almost take epilepsy as a good thing, you know, as it helped me. I look at the positive side of it a lot. I’m like, it made me much stronger. I own my epilepsy. I do, actually. I really do and I believe it’s made me a stronger person. And it has really, really you know, has its benefits.
It actually does.
Ingrid: Do you have a final thought or a top tip for somebody with epilepsy who’s just approaching adult life?
Rosie: I would say there are lots of services available and see if you can meet others with epilepsy. It can be hard because not a lot of people talk about it or, you know, it doesn’t come up often in conversation. But if you can, you know, there are support groups and meeting other people with epilepsy, it really makes you feel like you’re not alone, which, you know, you can struggle with when you’re a, you know, a teenager because you do feel different to your friends.
But that would be a top tip and something that it’s really nice having other people to talk about who understand what you’re going through as well as your friends and family.
Ingrid: That’s a great idea. A lot of the lay epilepsy bodies have adolescent and adult support groups where they go and do stuff together and I mean, whilst not everyone will be your kindred spirit, you might meet one or two, and that could be a really good support moving forward.
Rosie: Yeah, definitely.
Kaitlyn: I think you are living proof of my saying, which is, “from every crisis comes positive change”. And when you’re in the crisis, sometimes it’s really hard to see that. But talking to you and listening to all the things you’ve said is it really can create a positive change. And I think it helps us realize that we’re all flawed in might be in a medical way, might be in a personality way, might be in a psychological way.
We’ve all got little things about us that maybe we wouldn’t have put in our construct of normal, but there is no real normal. And coming through something like this and accepting the new parts about you is a really important thing. And I think also you are in a good position. You’re 22. You’ve navigated a massive challenge in coming to terms with a diagnosis, having to take control, as you said, be mature, take your tablets, change your lifestyle, actually look at the bigger picture.
And so the innumerable challenges you face in life now, you’ve got tools. You’ve got tools that a lot of people won’t have. And I think for a lot of young people living with epilepsy, recognizing that they have tools that other people don’t have is a really powerful thing.
James: Yeah, I feel as if epilepsy gives you a sense of discipline and discipline leads you a long way. And I think it’s fair to say within every industry and every job and anything that you do, discipline is a major advantage. You know, many people, if you’re a disciplined person, you’ll see that you may succeed much faster, you know, creates good habits, really strengthened my sense of discipline with everything that I do.
And I look at that as a major, major positive. And that’s really, really helped me. And it guides me through every challenge. Really, I’ve got discipline, and this is where it stems from.
Kaitlyn: And you really do own your epilepsy. And I think as human beings you said earlier, everybody’s got something, and this advice can be broader than that is we all need to own what we’ve got and really harness it, look after ourselves health-wise, the best way we can.
James: So the first thing is me owning my epilepsy. I am not afraid to tell people. I’m not afraid to educate people on epilepsy, just tell people, tell whoever you need, whoever you want to tell, and just understand that people are willing to learn, willing to understand and willing to help.
Kaitlyn: James, I have to say, you’ve done a remarkably good job of owning your epilepsy and all of the tips and pointers you’ve given about really tricky things like socializing and driving and relationships are just amazing and so useful for other young people living with epilepsy or learning of a diagnosis of epilepsy because it gives hope from someone who’s been through this experience that you can own it.
Kaitlyn: It doesn’t own you.
James: Yeah, exactly right. And I’ve got it.
Thank you for listening. This podcast has been produced by Lateral Connections with support from Esai Australia. The information in this podcast is general in nature and not intended to replace the advice of healthcare professionals. Please see your healthcare professional for any specific advice.