Purple Day bonuscast: What do you want to tell the world about epilepsy?

1:53PM Mar 18, 2021

Speakers:

Hattie

Rich

Intro - Hattie

Derrick

Charlotte

Bob

Deborah

Murray

Phil

Lauren

Keywords:

epilepsy

seizures

people

tonic clonic

tonic

medication

years

misconceptions

clonic seizures

life

maisie

partial seizure

biggest misconceptions

condition

triggered

understand

absence seizures

nice

podcast

explain

Welcome to epilepsycast, the podcast about all things epilepsy, from Epilepsy Action.

Hello, everyone. Welcome to this special Purple Day 2021 bonuscast where we're getting you, the listeners, to share stories and take us through this episode, giving us your thoughts on misconceptions and myths about epilepsy. We know there's still so many that are prevalent, even today. You know, for example, how epilepsy is only triggered by flashing lights or epilepsy is kind of just the seizure and there's nothing else to it. And we know, as an organisation, how much that just isn't the case.

Yeah, absolutely. And one of the great things about Purple Day is that we see people with epilepsy coming together all over the world to raise their voices and speak about epilepsy. And it's kind of our chance to shout to the world to, to let them know what epilepsy is really all about. So, we're really excited to have your voices featured here today. I really can't wait to listen.

Hello what's happening? My name is Derrick Kay, I've had epilepsy since I was seven years old. And I have tonic clonic seizures, to be precise. As it stands, I haven't had a seizure for about 13 months. But prior to that, growing up, I used to have them regularly. And as I got older, they started to reduce, got them down to about twice a year. But when I did have them, they were really, really bad. If I could say one thing about epilepsy, I'd say a few but if I had to narrow it down, I'd say don't assume anything and ask somebody with epilepsy about their epilepsy. I've come across a lot of misconceptions. I think the worst one was I was working at this workplace, had a seizure, post-seizure I woke up and I was very emotional,clingy. All my colleagues were telling me about it. They were just basically taking digs at me and just saying I was a crybaby and stuff like that which wasn't nice and just wasn't cool. Before I never used to speak up about epilepsy and misconceptions until some life-threatening incidences, and that changed my mind really. But ultimately, the best way we can clear up misconceptions is just being open to listening and asking people with epilepsy about their epilepsy individually and their triggers because it's different for everyone. Anyways, thank you for listening. Sweet!

Hi, my name is Deborah McCrudden and I'm 34 and I have epilepsy. My epilepsy started when I was 27 and I started having seizures completely out of the blue. It was very, very scary. One minute I was eating dinner, the next I was in an ambulance. I didn't know what to think. I was hoping that something had just triggered it and it would go away. But unfortunately it never did. I suppose one about epilepsy is everybody thinks that it's the same thing for everybody, that once you're medicated, it would maybe go away. But I've tried a lot of different medications. And for me, I'm still uncontrolled, like many years later. And that's a really huge misconception, you know, that people once they're on medication it can be controlled, you know, their seizures can be controlled, and they'll live a really happy, normal life. I'm not saying that I can't live a happy normal life, but for me, what is normal? I used to be able to work. I used to be able to live really independently and now I have two children. So my mum is my carer, she looks after us. I'm terrified of being left alone with my kids in case I was to take a seizure and one of them would get hurt as their very small. I hope in the future that my seizures will get controlled and I can have that kind of life again. I do know people that are controlled with medication, who do live the kind of life that I want to lead. And lot of people... I suppose advice that I would give to listeners on how they can address these misconceptions is never assume you know, never just think that people aren't working because they're lazy. You know? I think that scares me the most that people look at me and think she's just not working because she's a mum. She doesn't want to go to work, so she's just blaming her epilepsy. She's just blaming her seizures. I have a degree. I love working. I work with young people and it is my passion. One day, I would love to get back that, you know, so I guess the one thing I would say to people is, just don't assume, never assume what somebody is going through. Because epilepsy is different for every single person. And I have yet to meet one person who has the same experience that I do. Epilepsy is a very strange thing, a very strange illness, whatever you want to call it. And unfortunately, I have a nice relationship with it, a relationship I didn't really want to have, you know. I think everybody should just kind of try to keep positive, keep positive with it. Use the resources that are there and hope for the best. I mean, Epilepsy Action is a wonderful place, you know, it's a great place where you can meet people, talk to other people who are going through similar things and get a sense of what other people are actually going through too.

Hi, it's Murray here. I've had epilepsy for 25 years. It started when I was 16 and I have absence seizures. I generally have these five to six times a month, but once had 90 in one weekend. If I could tell you one thing about epilepsy it's that the person living with it can take on roles with responsibility, like managing other people. People living with epilepsy aren't stupid because they have the condition. People with epilepsy are found in all walks of life and at all levels in business, government, the arts and professions. We aren't always aware of them because many people, even today, don't talk about having epilepsy for fear of what other people might think. I've personally had comments in the past from people telling me I shouldn't have been in the roles I've held over the years, including managing teams of up to 80 people just because I've epilepsy. When asked them why they thought this, they said that THEY felt the job was too stressful for me and was the cause of my seizures. Some even said that people with conditions like mine shouldn't be allowed to work or be in charge of other people at all. I just took their comments in explained the reasons my epilepsy and prove them wrong. I started in an entry-level role in the company I worked for 25 years ago, progressed through management and I'm now subject matter specialist in HR, supporting managers on how to deal with employees with health conditions, including epilepsy. The job is sometimes stressful, but I rarely have seizures as a direct result. In fact, I sometimes have fewer seizures when I'm more engaged with my work. If someone ever tells you how you should feel or what you should do with your condition, don't get mad, help them to understand it more. Once they get over this barrier, they'll be far more useful going forward. If you ever need any other advice, contact the team at Epilepsy Action, they've helped me so much over the years. Keep strong and stay safe.

Hello, my name is Bob Sutcliffe. And I've had epilepsy since I was 36. I have tonic clonic seizures, which are actually managed now by a combination of medication and I've been successful with that medication for some time now. However, I think one of the most frustrating things is that when people talk about epilepsy, they think about the seizure, but they don't think about the fact that epilepsy is there with you all the time, even though you're not having seizures. And that often comes with anxiety, depression and mood swings. And sometimes those are the hardest things to try and explain or really give an excuse for, really, or explain that it's all because of your epilepsy. People find that really hard to understand. One of the most shocking stories I've got related to that is that I was once disciplined at work related to mood swings. And I had to explain that that was part of my condition and a side-effect of the medication I was on and had to get a doctor's note to explain that. And I just found that really, really embarrassing. But I think one of the messages is don't ever feel afraid to share and to explain yourself, because the more you can explain yourself, the more people will understand and the more people understand, then the easier it will be to have epilepsy.

Hi, it's Phil Betts. I try to keep the impacts of epilepsy down to a minimum but I always have to plan around it. Last weekend, for example, my children had gone to stay with their grandparents while my wife went to work. It was simply for the fact I tend to have the seizures first thing in the morning. Since the age of eight I've been having absence seizures and this is basically where I'd go into a bit of a daydream, bit of a trance if you like, where I can't talk, don't really know what's going on around me and in a bit of semi-consciousness. And when I come out of it, I'm a bit belligerent apparently, which is nothing like me. There are so many misconceptions out there in the 30-odd years I have had it and I can understand the thoughts of people who don't have epilepsy, just think it's about fits and reactions to flickering lights. But my actual trigger is lack of sleep and stress. My advice would be when you actually see someone in the street acting strangely, don't just assume they're drunk or having sort of drug issues. That's the issue my wife and children have. They're worried people walk on by if I was out and about and I had an attack. Also, the drugs I take are heavy medication and that also impacts my behaviour and how how I act as well. In the workplace, I've been described as lethargic, laid-back and almost not interested. That's where I feel there's more ignorance than anywhere in the workplace. Dealing with a job, and also taking a lot of drugs to control the epilepsy is enough. But also then having to try and be "dynamic" as it's classed, is also tough in itself. Previously, I've hid the fact. Now I simply tell people, and if there is a problem is really that there is to scan, look up and read up about. If I've got any advice for people it's never give in and you will have a fun and fulfilled life.

Hi, my name is Lauren and I've suffered from epilepsy since my 14th birthday. I have tonic clonic seizures and partial seizures for which I'm actually awake during them both. Since having epilepsy, I've noticed not many people actually really understand the topic and brush it to the side. There are many different types of seizures and [they] affect people very differently. It's also not just the seizures that affect our day to day lives. For example, I'm slow at catching on to topics and get called a retard or stupid. I've been mistaken for being drunk when having a partial seizure on the streets. I finally push past any comments I get to understand I am who I am. It doesn't matter if I [have] epilepsy - just keep being yourself.

Hi, this is Charlotte. I've had epilepsy since I was diagnosed at 11. I'm now 30. So I have lived longer with epilepsy than without it. I have three kinds of seizures: tonic clonic absence and myoclonic jerks. My absence seizures occur daily so epilepsy is never really far from my consciousness. The myoclonics tend to be at night-time when I'm tired and my tonic clonics are...well, they're hard to pin down. But I've been quite lucky because I recently had one year without a tonic clonic which is utterly amazing for me. And I really think that's down to having my VNS device fitted in 2018 - that seems to have really made a big difference to me because I didn't ever think that I'd go a year without one. One point I didn't think I'd go a month without one, though. It's quite incredible. One of the biggest misconceptions about epilepsy for me is that it doesn't affect your life. Whereas I've not had any area of my life not be affected by my epilepsy. I think that people don't understand quite how much it does affect. It's not just 'Oh, you know, they fall to the floor and have a tonic clonic fit'. You know, there are knock-on effects. I'm recording this with a very bitten and swollen tongue, having just had one yesterday. I can't really eat properly, and people don't really think of that stuff. I don't think. There's so much that is affected by a seizure. I mean, there's the confidence shake. I mean, I know that after a tonic clonic I start to think 'Oh, what can I do? Am I independent again? Will I ever be able to do this when I do that?', when actually I just know that it's that anxiety of epilepsy but I think a lot of the general public...unless you know someone with it, they don't know that those thoughts happen. I think one of the most sort of shocking things that's happened to me when I've had a seizure is someone stole my engagement ring once. I've had people tell me that I shouldn't have children because of my epilepsy, and that I would be danger to them. People can be really mean, and not understand that there is a person behind the condition. I tend to do a lot of reframing. I mean, as I've mentioned, you know, I've recently had a tonic clonic after a year of not having them, even though it's sad, and, you know, I am sad and a bit angry that I've had one. At the end of the day, I didn't think I'd ever go a year without having one. So I just reframe that in my head, like, 'Wow, I've gone a year, that's amazing.' That means I can do this, that we can do that again. And it's about picking yourself up and going, 'Right. Okay, I have epilepsy but epilepsy doesn't have me'. So yes, it may affect areas of my life. But that doesn't mean that I can't do everything that I want to do, I might just have to do things a little bit differently to other people. You know, I can go to music concerts. The last one I went to, was actually The Prodigy with my dad and we both wore eye-patches to keep the strobe light effect on my photosensitivity away. So you know, it's not about saying 'I can't ever do things', it's about saying, 'Okay, if I want to do that, how can I do that in a way that's safe for me and I will still feel like I'm enjoying and achieving something?'. So yeah, that's probably a tip of encouragement, and a good way that's got me through a lot of horrible times with my epilepsy. Thank you.

That was so nice to hear some really honest and open opinions straight from people living with epilepsy and kind of how they've adapted to some of the challenges they faced, whilst kind of really reinforcing that there's still so many myths and misconceptions out there that really need to be busted for the general public.

Yeah, absolutely. There's still so much work to do isn't there? But I agree, it's so nice to hear kind of how different people are facing life with their epilepsy in lots of different ways.

Yeah. And for Purple Day 2021, we're gonna be sharing sort of some results of a poll that we did, asking, again, people with epilepsy, what their kind of biggest misconceptions or myths they kind of find in their day to day lives. And that's gonna be all over our social media channels, which you can find at Epilepsy Action on pretty much everything. So go check out all the work and all the stories that we're sharing for Purple Day, which is today, hopefully, this podcast is coming out on Purple Day. So happy Purple Day everyone.

And we've also recorded an interview with comedian Maisie Adam about her epilepsy, and how it's kind of part of her growing up story and how she's handled it and how she uses it as part of her comedy routines, which I personally think is well worth a listen and you can find that in your podcast feeds as well.

Absolutely well worth listen. And this one is also going to be in video form on YouTube, which you can find at youtube.com/epilepsyaction. So that'll about do it for this special bonuscast. But as we mentioned in the Maisie podcast as well, there is a series two coming, perhaps Hattie-less unfortunately! So you've got to keep an eye on your podcast feeds for that hopefully, in the next few months.

Yeah, I'm gonna swap from being presenter to a listener as I go onto maternity leave, but I can't wait to hear all of the exciting things that are gonna happen in season two. So keep an eye out.

Absolutely. And I'm sure hopefully you'll pop up at least for one, right? Come on, we got to get the co-hosts back together.

You never know! You'll see what happens.

Alright, well, I'll catch you then. Catch you in the next one.