James: Hello and welcome to the I’ve Got This Owning My Epilepsy podcast series. My name is James, I’m 22 years of age, living in Sydney, been living with epilepsy since I was 18. I’m here with Kaitlin and today’s episode is Risky Business, where we focus on balancing social life with 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.

The diagnosis of epilepsy as a young person can be really tricky because some of the common triggers that can lower your threshold against having a seizure, like sleep deprivation, excess alcohol, are really a part of everyday life as a young person.

What we don’t want is for you to feel like you can’t have a great social life and fit in and be included in all of these activities. So James, how did you find the diagnosis impacted things? You were 18 at the time of diagnosis. Everyone’s going out drinking lots of alcohol. It’s pretty tricky.

James: Yeah um, look, obviously caught me by surprise, but there’s always ways around things. And just like you said, there are factors that affect your social life to an extent, but there are always ways around it. For example, you know, just knowing your limits and knowing what you have to do to, you know, achieve everything that you want, don’t let epilepsy, you know, get in your way.

For example, sleep. You may see all your friends going out pretty late at night and you’d possibly want to go out as well. But, you know, you need to think to yourself, yeah, I need to get my sleep. It is for the better. And you may try to limit yourself when you’re first diagnosed. Think that I have to sleep much more than I actually have to do or, you know, take it to the extreme.

But that’s not necessarily the extent that you have to take it. You just know your limits and then work out what’s best for you and don’t let it disturb what you’re doing or your motive towards anything socially related.

Kaitlyn: I think the alcohol thing is tricky sometimes as well. And what I often say is you don’t have to drink no alcohol. Everyone wants to fit in and be part of it. You just have to kind of curb it a bit. So instead of going out when everyone’s having seven or eight drinks, you try and stick to three or four and have water in between.

There’s a there’s an old saying that says, you know, nothing good happens after midnight. And I think the same probably goes after having, you know, two or three drinks with your mates. So just modifying things so that, as you say, you feel like you’re a part of it, but recognize that there are just some limitations and I guess trying not to resent them, but think of them as a positive thing, You know, I’m going to wake up in the morning and be able to go for a run and enjoy my day. I’m going to save 50 bucks, You know, my health is going to be better. I’m probably going to be less stressed. So, you know, there’s ways around it, but it’s kind of flipping your mindset sometimes.

James: Yeah, that’s exactly right. Especially with the alcohol. You know, I did realise when you got my age, you know, everyone is drinking, you know, two or three drinks, you feel included and or not even drinking at all. I’m you’re still there. You’re still having a good time. You’re in that social environment. Drinking necessarily or basically isn’t anything really to have a good time.

You can just, you know, be with your friends and enjoy the environment, not necessarily the things that induce the environment into a, you know, different state.

Kaitlyn: Yeah, And I think it’s that acceptance and lack of resentment about it and, you know, really wisely and you’re right, you don’t need to drink to have a good time. It’s just this concept that that’s what everybody does at that age and stage and acceptance in that social circle can be important. I often even say to people, you know, have a soda with lime, and who knows whether that’s got vodka in it or not, but do the right thing by you to keep yourself safe and have a good time.

James: Yeah. I also think if you open up about it, if someone would come to the situation, someone will say, oh, can I please have a… do you want a drink. If you’re open about it and you tell people say, “yeah I do have epilepsy”, they will understand. sometimes it may be often that you know someone’s offering a drink and you’re hesitant to say, Oh no, but it is okay to say no, I have epilepsy and people, you know, they’ll realize that.

And so it’s not necessarily a fact that you have to hide it or anything like that. You can sort of, um, embrace it to an extent that helps you outline a lot of things throughout, especially socially. Ah you see, things change and then your perspective on going out may also change for the better. You see the little things of going out that make you happy that you don’t necessarily need with alcohol or anything like that.

Kaitlyn: And I think having the confidence to say that is brilliant in the setting of it’s often peer pressure that’s driving that and that would affect people probably younger than you, more so than your age, where you’re sort of more confident. But having the confidence to say this is the reason and people go, oh, okay, fair dos, back off. Because there is even in people with without epilepsy, there’s the social pressure to drink or to, you know, use drugs or what have you.

So that’s super wise. And we always say it’s really important also to recognize that, you know, it’s the perfect or I call it the imperfect storm that creates the problems, you know, out too late, drinking too much and forgetting the medications. Because often, the social side of things and the alcohol side of things goes with accidentally not taking tablets.

And then you kind of creating this environment where, you know, things are fairly likely to go pear shaped, which is what we want to avoid.

James: Yeah, in my opinion, it’s in moderation and just working out what is best for you. Me personally, I don’t necessarily drink at all, but I did, and it doesn’t change anything, especially just going out like just the confidence and building that sense of confidence. Telling people that you have epilepsy, it also, you know, it shows to you that people do understand, people do care.

And those people that you open up to in your confidence will very well help you down the line as well with future endeavours, or you know, I also took epilepsy as an opportunity to, you know, embrace that I have something that gives me something to talk about in the sense of motivation so that I can put that motivation into, say, my work life as well.

Kaitlyn: Yeah. And I think the way you’re sharing it with people around you is also educating people about it and seeing someone like you going about your business, going out, with your mates, doing stuff, you know, living with epilepsy, which is what I want you to do, really highlights, I think, to people that most of the time you’re not having a seizure.

This is a disorder of episodic events, seizures, and you know you’re seizure free. Some people have more frequent seizures, but even then they’re often self-limited. They’re not the whole person. They’re not the picture of what this person’s like all day, every day. So, you know, having that confidence to say, here I am, look at me, I’ve got epilepsy is just is such a wonderful, wonderful thing.

James: Yeah. Yeah. Exactly right.

Kaitlyn: James, you were diagnosed at 18, which is a really tricky age where when you know, your social life is really starting to take off. And I know that was mid-COVID, which probably changed things a bit for you. But can you imagine how you would have navigated that at that point in life where all of your mates were turning 18, lots of parties going out every weekend?

James: Look at first, you know, I may have been a little bit hesitant, or, not necessarily hesitant to attend, maybe hesitant to participate. But what I really would have done is, you know, gone out with my friends, still had a good time and, you know, just gone about it with the fact that not necessarily a worry. So when I’m going to go out, I’m not going to worry about having a seizure or anything like that.

Just try to put it at the back of my head, especially with my social life. Talking to your friends and then your friends knowing your limitations. That’s a really big thing. But the way I would have navigated it is basically, you know, just outlining the positives of me going out and the negatives. There’s always more positives and negatives when you’re going out, especially with epilepsy.

It doesn’t –  it’s not a negative thing to go out going out, or it helps your mental health as well helps you get away from those thoughts that you don’t necessarily want to have, you know, building a support network with your friends socially, doing activities that don’t involve drinking or necessarily, you know, wanting to go and party. I’m try find activities like playing soccer or going to the park.

When I was in COVID, well, we were in COVID, I basically rode my bike every day around with my friends instead of, you know, going out, which we really couldn’t. But if it was this day and age now where COVID isn’t as critical as it was before, I still would, you know, go out and just lay out my options and where I’m going and what I’m doing and, you know, just live with it.

It’s it doesn’t really hinder my social life, or it didn’t really hinder my social life basically because I spoke about it with my friends and, you know, really being open with the fact that you have epilepsy, it’s not an issue. You can still go out, you can still do basically everything. So just understanding that before I go out or when my friend asked me, “Oh, do you want to go out to a party and maybe It’ll finish at 3 a.m.” – so you don’t have to go oh no because everyone’s going to be leaving at 3:00.

I can go there and say leave at 11 because I know my sleep needs to be prioritised. Then you may also think, Oh, he’s leaving at 11. Like, why is he being, you know, like a Debbie Downer or anything like that -but you’re really not. And if you’re open about it, everyone will understand. People will appreciate it, too.

People appreciate like, look, he’s prioritising his health over staying out with the boys and partying and doing whatever that they’re doing.

Kaitlyn: I think it’s a great point you made, James, that your social life isn’t just going out and drinking and partying as well. And I think it’s surprising sometimes. And you probably would have found the same thing that when you actually say to your group of friends, you know, do you want to go hiking or mountain biking or do some sort of other activity that’s not based around alcohol and nightclubs and what have you

Probably a lot of people will happily do that. You have a barbecue and a couple of beers and then head home, you know, So that’s another really important thing is we focus on this one part of the social life. But actually, it’s a gift almost because it allows you to sort of expand your thoughts about what you could actually be doing to socialize and enjoy your life, which is, you know, probably more enjoyable, you know, in the long run, too.

So I think that’s really insightful.

James: Yeah, it’s that that raises a good point. It helps you find different avenues in life – it may inspire you to find something else, something different. For example, like riding my bike and never used to really ride my bike or, you know, partaking in activities with my friends that we usually didn’t do, they were always, you know, mostly sport sports based.

It also brings you like a sense of motivation to, you know, strive in that area. It also develops new interests, I guess as well, because, for example, maybe I was really into the social life before and I really wanted to go partying, and that’s all I necessarily not care about, but prioritised, and I thought that was the only thing that you could do, but you can’t.

And then when you find a new space or a new avenue, you can dive really deep into that and progress really, really well.

Kaitlyn: And it’s so good from the mental health perspective, which is a big focus for all of us at the moment, really highlighted by the challenges of everyone with COVID, that combining physical activity and socialising at the same time is incredibly powerful from the point of view of keeping all of our heads on, you know, as we’d like them to feel.

So you’re right. It’s it’s turning a crisis into something ultimately very positive in many ways, not just managing epilepsy in life, but, you know, looking after yourself.

James: Yeah, it with me really strengthened my mental health. It you know, obviously we can’t deny epilepsy faces you with challenges. And once you overcome those challenges and you know, you work out your methods, it really builds you as a person and makes you stronger because you’ve conquered many things. And then you use that energy and strengthen that mindset that, yeah, I can get through things, and just your mental state really hardens up, and you’re not necessarily so worried or you’re focusing on the better things people always say, you know, be positive.

And that really is true. You know, a positive mindset, especially when you’re going out. If you’re not going out with a positive mindset that, oh, I can’t, you know, drink, or you know party really hard and sad or not, but if you don’t go in there with the positive mindset, you’re not going to enjoy yourself. So you go in there in a positive state, and you’re going to leave in a positive state.

If you go there with a positive mindset, you leave in a positive mindset.

Kaitlyn: Can I ask you two questions… at the beginning, did you have a sense of anxiety about is another seizure going to happen to me? And if you did, how did you navigate moving that from the forefront of your mind to your back pocket?

James: Yeah, distracting myself to an extent, but also realizing that that thought is there. If you keep putting it behind and not necessarily addressing that thought as a whole. Once you’re confident, especially if you say your lifestyle is correct, if you’re doing everything right as you’re supposed to, you know, eating well, taking your medication, getting enough sleep, which is the, you know, the contributing factors towards me having epilepsy, I needed to sleep, eat, anxiety and stress.

But I’m putting those methods in place and realizing that you know, they do work. And if you’re following those steps, you know, your chances of having a seizure are reduced massively. So once you realize that I’m doing all the steps, there is nothing else I can do. It’s, you know, it’s basically fate. At the end of the day, if you’re taking every single step and precaution, then you can move past it.

I did have, I guess, a little bit of anxiety at the beginning and you’re thinking, well, if I have a seizure, but, you know, over time or, you know, within two or three weeks, depending on your mindset, it can really change. Once you realise , oh, yeah, I’ve had that feeling or, you know, I’m anxious about having a seizure.

Once you’ve overcome that and you realise, oh, I wasn’t going to have a seizure, it just gets better over time. And say those thoughts come back, but then you’ve shut it down again and you realize that you’re not. It just gets really strong. And then to the point where you don’t necessarily have that thought.

Thanks for listening! Don’t forget to share and subscribe, so you can catch our next episode, “Bring Home the Bacon”, where James and Kaitlyn explore the complexities of living with epilepsy in the workplace.

This podcast has been produced by Lateral Connections with support from Eisai Australia. The information in this podcast is general in nature and not intended to replace the advice of health care professionals. Please see your healthcare professional for any specific advice.