As a person growing up with epilepsy, we are faced with challenges that others aren’t and It’s important to prioritise our mental wellbeing.
Sharing is caring. Rosie and Prof Ingrid share some advice around managing your mental health, based on their experience.
Rosie: Hi and welcome to the “I’ve Got This: Owning my Epilepsy” podcast series. My name’s Rosie and I’m here with Professor Ingrid Scheffer. Today’s episode is “Healthy Mind Happy Life”, where we explore the impact epilepsy can have on mental health. My name is Rosie. I’m 22 and I’m from Melbourne. I was diagnosed with epilepsy ten years ago and have absence seizures.
Ingrid: My name’s Professor Ingrid Scheffer. I’m an epilepsy specialist. I’m a pediatric and adult epileptologist, which means I’m a specialist neurologist who works almost entirely in epilepsy.
Rosie: Epilepsy has definitely, uh, impacted my mental health ever since the time I was diagnosed. For me it’s been a little bit unpredictable, so it was controlled fairly well for a couple of years and then during my final years of high school it… I had an incident – and it really impacted my mental health. And so that was a tough time.
And I definitely, I sought out help. So I went to my school psychologist, and they really helped me sort of recognise the impact that it was having on my mental health, because I think it can be easy to be maybe in denial that it’s not impacting you. But once I accepted that, um it, it can help you work through it and realise that it’s okay that your epilepsy is having an impact on your life.
But there are ways that you can, you know, kind of work through it and not let it control you entirely, um which I found really important and really helpful that I accessed that support.
Ingrid: Did you feel down or were you anxious or was it both?
Rosie: It was sort of both. So I was almost ready to go for my driver’s license, which I was really excited for. I think I was coming up to 18, and then I had a seizure, which meant my license got taken away for six months or something like that. And it was also the time of year 12 exams.
So I was already stressed about that, and I just felt, that it felt like I couldn’t control it. And I was so close. And this one hiccup, you know, it only lasted a couple of seconds and now all of a sudden I, I have to wait months and all my friends were getting their license. And, you know, I was kind of told, oh, maybe this won’t happen for me or it’s going to take years.
And that was really hard to accept because I didn’t want to wait years to get my license. And I felt like I was so close and sort of this one thing had happened and it felt really unfair that it, I couldn’t get my licence or it was going to take really long. Um, so that’s definitely something that I’ve struggled, that I struggled with.
And driving continues to be something that, you know, you can get so close and then you have a seizure and it just feels like, you know, it’s ten steps back because the system, whilst you know why it’s in place, it just feels, you know, bit like a kick in the guts that you can’t do it when you feel like you’ve done so well.
So yeah, and then plus, you know, year 12 can be a very stressful time. So it doesn’t help during that.
Ingrid: Absolutely. And I think the issue is that it’s a bit of a rollercoaster ride, like you said, with the driving issue, you know, is suddenly going fine and then something goes wrong. You have a seizure and it’s all gone wrong again. And I’m really trying hard to protect my young adults from this rollercoaster. And so sometimes when they’re 15 or 16 and they’ve got really severe epilepsy, I’ll say to them, look, you might never drive and that might be okay.
There are plenty of people out there who can never drive. Now, I hope you can. We’re going to work towards it, but it’s better to know that this might never be for you, because that way you can sort of reframe your world. And maybe you don’t want to be an airline pilot anyway, but that’s something you can’t be.
And you can start to frame your expectations so that you don’t have this constant up and down and get knocked down. But let’s go back to feeling about feeling down and anxious. How how have you managed that over time?
Rosie: I sort of just accept when my epilepsy is not controlled or I have a seizure and I feel down, I lean on those around me. So my family in particular because they see the impact that it has, I mean, it’s difficult, but sort of just accept that it’s happened because for me I realised there’s no point being upset over something that you can’t control, and you can’t control a lot of things with your epilepsy, but just focus on the things you can and yeah, it might work out in the end, it might not, but you just don’t know and so, but definitely my family.
And then also, you know, professional help. There’s a lot of resources, particularly at school or probably even university.
Ingrid: Like what?
Rosie: Ah like school guidance counsellors or psychologists and they can really help. And also I would recommend for people that are in year 11 and 12, there is help going into university. So for exams they can be stressful. But I actually was able to receive exam consideration. So, you know, I’m getting some extra time in my exams and I didn’t know I was eligible for that.
But if you ask your doctor or you ask teachers at school, there can be things put in place that can help you and sort of alleviate stress, because particularly if your epilepsy isn’t great at that time, it just sort of takes away one less thing to worry about.
Ingrid: I think that’s really important to always think about people’s mental health and I’ve, in the last 5 to 10 years, adopted the practice of asking in every consultation, are you happy? Are you sleeping well? Because those two issues are tied together. If you’re not sleeping well, well, none of us are very happy, and maybe nobody’s asked you if you’re happy.
So I now routinely ask that every, every single consultation. And usually it’s interesting. It doesn’t take a moment once you ask that question, if the person is significantly depressed, they usually start crying, or the room will just feel it. You can actually feel their mood disorder. And then I start to address that with the patient and whoever’s with them, their partner or their family, or if they’re on their own.
And then we talk about strategies. What can we do about that? Because I’m not a I’m a psychologist, but I then say, well, I think you should go back to your GP and get a referral under the mental health initiative to a psychologist, and then you should see one. But it’s important to know that not all psychologists are equal, just like not all doctors are equal.
And you might try one psychologist and that might just not be a good fit and you might need to try another one. And then you can ask your GP, or you might have friends who are seeing one and they’ll say mine’s fantastic. And then you’ll try and get into them. Now one of the problems with that is they’ve all got waiting periods and you go, oh, I don’t want to wait two months or three months, but believe me, waiting for the right person is worth the trouble because that will change your life.
And a really good psychologist, you might just see them six times under the mental health initiative. Or then you might need to go back to your GP and get another six consults. Or I’ve got quite a lot of my young adults that will see the same psychologist once a month long term, and they just keep that boat on an even keel.
It’s fantastic. So I think recognition of your mental health, understanding of it, whether it be depression or anxiety, is incredibly important.
Rosie: How have you seen epilepsy impact your patients’ mental health? Is it often the anxiety of maybe not knowing when they’re going to have a seizure or when they do have a seizure, just feeling maybe, you know, kind of deflated because they thought everything was going really well or, you know, how would you….?
Ingrid: I think you’ve encapsulated that perfectly. I mean, one of the hardest things about epilepsy is its unpredictability. I’m sitting here perfectly fine, and I have a seizure. Where, what do I look like? What do other people see? Now you have absence epilepsy, Rosie, and that’s mild. And half the time people won’t even notice. Hopefully I would. But I think many people wouldn’t.
But if you have, you know, major tonic-clonic seizures, used to be called grand mal is the old term, but we now call them generalised tonic-clonic seizures. That’s pretty scary for everyone around you. I mean, if you have it, you don’t know how scary it is, but the person falls to the ground. They’re frothing at the mouth. They might turn blue, they might wet themselves.
And that is very confronting. And it does change the whole, um, relationship, once you’ve seen someone have that because you sort of… it’s scary. So I think it is important that the person with epilepsy appreciates that it’s good for those around them, that they see a lot or that they’re close to, to know they have epilepsy, because otherwise if they see their first seizure, their first tonic clonic seizure in their life, they can think the person’s dying.
And it’s really, really frightening. So I think it’s important to have those around you are informed of it, your disorder. But back to your question, ah what is hard for the person with epilepsy is the unpredictability. But I also think it does take a toll on their mental health in other ways. And people often get depressed. I think, you know, a third of us have depression at some time in our lives. And I would say it was even higher for people with epilepsy.
Rosie: Yeah, moving from pediatric to adult did bring some feelings of anxiety. How would you recommend your patients deal if they’re also feeling anxious or recognize maybe feelings of anxiousness?
Ingrid: Yeah look that’s a great question. I think people don’t always know they’re anxious and they’ll say, oh no, I’m not worried. And then they’ll sit there and you can feel how anxious they are. So the first thing is realising you’re anxious and thinking about how can I do that? And one of the good things around that is strategies to ensure you’re adherent, which we’ve talked about, um but also strategies to manage your anxiety.
And that might mean seeing a psychologist to talk about that. And you know, they’re really useful life skills. If you can learn how to manage when you’re anxious, we all get anxious. That’s part of being a human being. If you can learn how to manage your anxiety, then you’ll cope better with whatever life throws at you whether that may mean you can’t drive for a year or two, or you get the sack from a job, or you don’t like your course and you drop out.
Whatever happens in life, we get anxious. What am I going to do next? How am I going to manage this? And so developing strategies for that is really important, and that may just be putting some routine in your day, or letting someone know that you’re going out when you’re a bit worried about it and where you’re going. Um, it may be ways of falling asleep at night, so that you sleep better.
There’s a whole lot of ways you can manage anxiety and there are lots of resources on the web you can look at for that as well. Lots of people are worried about the stigma that goes with epilepsy. Has that been an issue in your life Rosie?
Rosie: I…., because of my absence seizures, which were very unnoticeable, they were probably up to 5 seconds, it just looked like I was rolling my eyes. People didn’t notice or they just thought that I wasn’t listening to what they were saying. So when I told them that I had epilepsy, people were very shocked because when they think of epilepsy, they think of a tonic-clonic seizure.
And often I did feel like I had to sort of justify that I, that’s not the type of seizure that I had, and that no, I’m controlled, I’m not going to have a tonic-clonic seizure. It’s kind of disappointing sometimes I don’t like the fact that I had to feel like I had to justify. Yeah, that’s something that I guess I found, in terms of stigma, people think about tonic clonic seizures and that can freak people out because they think that you’re going to drop in front of them and they don’t know what to do. So I guess that’s what I’ve experienced in that people don’t know what absence seizures are.
Ingrid: Yeah. So I think that epilepsy, sadly for the last, you know, 5,000 years has had a stigma associated with it. I hope that’s improving with time, with education, but it really comes, I agree, from the person that’s having the tonic-clonic seizure, and what we’re doing today is going to help that help people learn about epilepsy and learn that there are many, many forms of epilepsy, and many patients never have tonic-clonic seizures. But if they do, we need to know what it is and how to manage it.
Thanks for listening! Don’t forget to share and subscribe, so you can catch our next episode, “Risky Business”! Where James and Kaitlyn discuss balancing epilepsy with a social life.
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 health care professional for any specific advice.
If you are having a difficult time and need someone to talk to, consider contacting a local support service, such as “Lifeline” in Australia, on 13 11 14.