Purple Day Special 2025 1/2: Nicole Bateman chats with Hattie Brant

Epilepsy Awareness with Hattie Brant from Purple Dayss

In this special episode of Conversations with a SEND Mum, Nicole Bateman is joined by Hattie Brant, founder of Purple Dayss, to raise awareness for Purple Day (March 26th)—a global movement dedicated to increasing understanding and reducing stigma around epilepsy.

Hattie shares her personal journey of living with epilepsy and the misconceptions she’s encountered. Together, Nicole and Hattie bust common myths, discuss essential seizure first aid, and highlight the unseen impacts of epilepsy that many people don’t realize.

Key Takeaways:

1. Busting Epilepsy Myths
   • Debunking common misconceptions, including the idea that epilepsy always involves convulsions and flashing lights.
   • The reality of different seizure types and how epilepsy affects people beyond the physical symptoms.
2. Seizure First Aid – What Everyone Should Know
   • The do’s and don’ts when helping someone experiencing a seizure.
   • Why it’s crucial to stay calm, time the seizure, and ensure safety rather than restraining or putting something in the person’s mouth.
3. The Hidden Impacts of Epilepsy
   • Fatigue, memory issues, mental health challenges, and how epilepsy affects daily life beyond seizures.
   • The importance of inclusion, understanding, and accessibility for those living with epilepsy.

Resources Mentioned:

• Purple Dayss – Hattie’s platform raising epilepsy awareness: @PurpleDayss
• Young Epilepsy: www.youngepilepsy.com
• Seizure First Aid Guidelines: Epilepsy Society

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Transcript

2:08

Hello and welcome to conversations with an SEND mum. With me as your host, Nicole Batman. Today is one of our special Purple Day episodes, and I am joined by Hattie here from Purple Days with two S's who's gonna be sharing a little bit about life, living with epilepsy some myths that she would love to bust and different things there. So welcome, happy. Hi. Thank you for having me. I am really excited. That's right. Thank you for coming. So we met at a young epilepsy event probably about a month ago now, celebrating and sharing voices of women with epilepsy as well as moms of kids with epilepsy too. So can you tell us a little bit about yourself? Yeah, of course. So my name's Hattie and I run a little small business called Purple Days, which is where I try and spread awareness for epilepsy and mental health. And I sell different types of merchandise for the epilepsy community. And anyone else with a chronic illness? Yeah, I got diagnosed when I was 16 with generalized epilepsy. And since then, really? It's affected my life in many ways that I don't think people realize and understand. And that's, I needs to be spoken about. Yeah, absolutely. Thank you. I love it when we people use their experiences to then be able to share what the realities of something, because we might hear about certain things in the news, in the media, et cetera, but until you've lived it or you've lived with someone there and it's part of your life, then you don't necessarily understand the, yeah. So thank you for sharing. So. Before we jump into a little bit about how it impacts you, day to day, what is a myth of epilepsy that you often hear that you're like, oh, that's definitely not true. Oh my gosh, there are loads. I think definitely the two that reach out to me the most are that not. Everyone's epilepsy and seizures are gonna be the same. And it's not always to do with flashing lights. Yeah. Yeah. And then the second one is seizure first aid. It's not always just shove them into a recovery position. Yeah. And phone the ambulance. It's completely. Different for everyone and different seizures. Yeah, absolutely. Thank you. With that seizure first aid one, just because if people are listening now and they're like, okay, so what does it depend on? What are kind of some tip top tips that you would give? So I know that with me, if I'm having a tonic-clonic seizure. Leave me be, make sure my head's protected, but don't train me. Put me in the recovery session. Let me shake. And the most important thing is time. It please. Time it. Yeah. If it goes over five minutes, then you can call the ambulance. But I if it was just like a one minute tonic clinic, I don't feel the need. For someone to call the ambulance and the paramedics for me, unless obviously I'm injured, et cetera, but I actually have focal seizures more often than tonic chronics. So that is obviously completely different with my focal seizures. I think it's mainly just having someone by me timing it as well and just keep talking to me and making sure I'm okay, making sure I'm safe. And that's, yeah, that's it really. Yeah, absolutely. Thank you for that. And I dunno about you, but for example, coming out that postictal post seizure phase, my son who has focal impaired awareness is one of his types. He gets so confused. He doesn't know where he is. He doesn't know who I am. He's, yeah, I dunno whether you get that confusion as well. So having some reassurance, like you've said. Is key, isn't it? Yeah. Yeah. I when I've had a bad one, I do get that sort of confusion. I remember I was at work once and they were trying to tell me, like, they were saying like, who am I? What's my name? And I just didn't have a clue. But if they're only quite small ones, I tend to have What are the main, I don't wanna say side effects or. Something like that, that I've just had one, I will notice my mood and energy completely drop. So if I was a bit unsure about whether it was just an aura or a seizure, I can tell the difference after and I'll be like, okay, I've got a migraine out. I'm need to go to bed. That was probably a seizure. Yeah. Timing, what you said, like is, yeah, is key, isn't it? Because it's, it's that over five minutes ambulance, but underneath that, as long as no injuries, et cetera, then it's, it's okay. And just that reassurance there too. Yeah. What is interesting as well is that. Often what you said about flashing lights that is only about 3% of people with epilepsy have that as a trigger, yet that is, if you asked, if you went on the street and just asked people what they thought of when they thought of epilepsy, you can probably guarantee that many people who don't. Have that in their lives. Yeah. Would say flash and shaking. But that's, that's what I thought. Yeah. I dunno about you, but that's exactly what I thought. And then I remember the doctor saying that it might be'cause of my hormones and I'm getting my period and stuff. And I was like, like what? Yeah. It's because I did just think it was flashing lights. Yeah. And that's why, and that's why I'm like, right when I see depictions say in films and things like that. Often it is that those tonic-clonic are shaking and flashing lights, you know, don't go to the to the club or things like that. Yeah. And they're like, come on, like let's show some wider varieties of seizures and also triggers because life, I dunno about you, but for my son, anxiety, excitement, illness, tiredness, all can trigger. Yeah, absolutely. Tiredness and stress are massive triggers for me. Heat as well. If I get too overheated, that can trigger seizures for me. And I only the past couple of years have noticed that with going on holiday and things like that, I have to be really cautious about what I'm wearing, what I'm doing, and to take it easy. Yeah, absolutely. And that's it. I think that's an interesting point there. A lot of people. Share as well is that it's so changeable like that. You've just noticed that a few years ago. Mm, yeah. Massive. My seizures now from when I had seizures at 16 is completely different triggers and side effects. They're all just changing constantly. Yeah. And so how do you, in your day to day life, tell us a little bit about your day-to-day life, the impacts of epilepsy in general, and then how you kind of make the most of, of different opportunities that you have. Yeah, so I work full-time as a SEN, teaching assistant. I absolutely love my job. I'm very. Pleased that I can work full time, but it does affect me in ways that I think people might not realize. You know,, I'm like an old lady. I go to bed at half seven and then wake up the next day and I still need a coffee and an energy drink to get me through the day. Yeah. And memory, I'm always writing down notes. Because I don't want my work to think that I'm not capable of things like that. So I dunno about anyone else, but I always feel like I have to work 10 times harder just to sort of prove myself, I guess. Right. But yeah, it's, it can be difficult. But I think you just have to. Push through it. It's always worrying as well when you have a seizure in the workplace. And because mine are mostly in the day, obviously if I'm stressed at work, that's a trigger. So it is a bit annoying and embarrassing at times, but I think it's just something that I have to deal with. Yeah. Thank you for sharing that because it's so important for people to share. You know, you, you are at work, you're stressed potentially at some points. Mm-hmm. And then that could trigger a seizure and that's, that's part of your life and your day to day. How does that, mentally wise, that mental load of how does. How do you kind of, any strategies to help you with that? I've gotten loads better. I think. I've been in and outta therapy since I was 16, to be honest. Yeah. And I've gotten way better with how I handle things. I remember I was at an old job I. Once and I had a seizure, a big tonic-clonic, and I went home and the next day I brought in cakes for everyone to say sorry. And it's just like, why? Why am. Yeah, I have gotten loads better yeah. Being like, this is, this is what happens. Yeah. So, so what, you know, I think it's so important that staff members, especially working in a school, I notice if a child had epilepsy, there would be procedures in place for them. Support plans, care plans, et cetera. And I think it's important. In any work environment, a school or not, that a staff member needs to have a support plan as well, and a care plan and their emergency contacts. Yeah. Yeah, definitely. Absolutely key. And that's what you hope in, like you said, any workplace you hope that that would be, that would be the case and there would be support there and people would know what to do and what to look for. Exactly. You know? Exactly. Yeah. Yeah. I mean, I, I make videos for my sons teachers and TAs to just, oh, I love. To be like, right, if there's a new person that comes into the scene,'cause you know, staff changes, et cetera. Yeah. They can just watch this little five minute video where I explain, well, this happens. You might see lip smacking, you might see, you know, the variety of different things. This is one type of seizure, this is another one. And so that then, because if someone reads epilepsy on like a care plan or, or something for a child or, yeah. Or for an adult at the workplace, they, you know, might go to, okay, I'm looking for shaking. I'm not looking for other signs, so therefore I'm like, right here's my video. Here's all. Specific types and these are the after, you know, the, in the postictal stage, what happens and what you need to do. So yeah. Yeah. I've definitely known over the couple years that I've worked with children and in nurseries and schools and stuff, that the first aid training that you go on, that you have to have when you're around children, et cetera Yeah. Is only for tonic-clonic seizures. You know, everyone I remember when I told work and they were all like, oh, we know what to do. You know, we were all first aid trained. Yeah. I was like, actually there were over 40 different types of seizures. Yeah. And you probably wouldn't know what to do if someone had an absence or such and such, so, yeah. Yeah. There's there's still a long way to go with I think some of that. Like you said, the basic first aid training doesn't cover all of the different types of seizures at all. Yeah, so that's why it's important to talk about, individuals talking about their specific, types and, and different things like that of seizures and impacts generally beyond the seizures so that then general society, everyone can kind of get to learn stuff'cause you don't know what you don't know. We didn't know before. And so it's, it's so important. That's why I'm like, yes, that's why we've got these Purple Day, episodes to be like, have a listen, tell someone else about it as well. Like if you've listened to what Hattie has just said, then you know, go and share it with someone else. And obviously you also, you raise awareness through your small business and your brand. Mm-hmm. Why? Why, why is that important to you? I actually came up with this idea when I was 18 and I'd sort of accepted the fact that I have epilepsy now and it's gonna be women for the rest of my life. So how can I sort of make it a bit prettier, I guess? And I remember going on to Amazon and Google and stuff and looking for like epilepsy merchandise, because I used to see all the time cute things that diabetics would have, like the nice, the nice patches and stuff. And I was like, oh, I wonder what, what's out there for me? You know? And then I suddenly very quickly came to realize that there's not a lot. It's a very small community. And I think that's why I wanted to make something that someone, when they're there you go through that would wanna wear, you know, me at thinking back to me at 16, I think I would've loved a little Purple Days company Yeah. That I could go to and stuff. Yeah, yeah. So you're doing it for you younger you as well? Yeah, exactly. Right at the beginning as well. Yeah, definitely. And I think that sense of community and understanding and meeting people who are going through similar things, not the, not exactly the same.'cause everyone is different and everyone presents in different ways, but it's that unifying factor of that community I think is so important. Mm-hmm. Yeah. Yeah. So, so yeah. So you've got the different things. So how are you celebrating purple day? How do you, do you mark. Oh, I've got a little secret going on that I'm very excited about. Yeah, me and my mom are doing something very exciting. I think by the time this goes out, the secret will be out. Okay. Yeah. But yeah, just, I just go cr I dunno about you, but I go crazy at March. Yeah. Everything's purple. Yeah. Yeah. Do it all. Exactly. Do you know what we're doing after recording this? So this is we always do every, every purple day we take the kids. We wear our purple t-shirts, we then go to the supermarket and we get all the purple things like, yeah, I've done that. We just go with like cas Yeah. Purple. Yeah. Like grapes, purple grapes. Yeah, like everything or that's slightly purple. And then we just put it in our, yeah. I've done that actually. I met up with some friends just for a catch up and some drinks and it was actually my friend's idea. She was like, should we all dress purple? And I was like, yeah. And we all dressed in purple and we made purple cocktails and yeah. Oh, amazing. So good. So good. Yeah, I love it. And for my kids, for example,'cause you know, both of them have seizures and it's a day to. Just be like, actually yeah, it's epilepsy day. Yeah. It's a positive day where even though yes, there are struggles and it's hard and especially when my daughter sees my son's seizures and all of that, and she's only little and she's only six and all of those things, but we come together, we celebrate it, we get our purple things, it's a yearly thing and we just love it. Love to raise that awareness and, and get people involved. So. Absolutely. Yeah. I love it. Yeah. Yeah. So I'm looking forward to, so if you're listening to this and you're like, oh, what is this surprise? Go to purple days on Instagram. Yeah. TikTok. And they'll be able to see the surprise. Yeah. Go and check it out. And I'm a bit nervous, I'm not gonna lie. I think my mom's nervous as well, but it's one for the. So is there anything, for those people who are listening and might be like, oh, actually I'm really at the start, like, maybe my child has had a seizure, maybe they have had a seizure start of the journey. What do you wanna say to people at the start of their epilepsy journey? Something that I wish I would've done, but when I, when I was 60. I shrugged it off. I didn't want to have epilepsy. I shut it down, hid it from everyone. But something that I really wish I would've done, which I do now, and it helps me, is support groups. I can't shout it louder enough. You know, when I was 16, I thought, no, that's so embarrassing, but just being there and knowing that there's other people that feel the way you feel is such like, it's, it's really nice and I've met friends from it and I definitely would recommend support groups. Excellent. Specific, is there places, support groups like young Epilepsy, do you go along to. Or other, yeah, younger effects are amazing, especially, especially if you are a young adult or child going through epilepsy, epilepsy diagnosis. They, that's where they target and they do so much. So I really recommend looking into young epilepsy and, but I actually remember I went to my first support group at my hospital where my, where I go. So it might be worth as well checking in with you. Local doctors, local hospitals and stuff. Yeah, that's good. Excellent. Good. So, yeah. And, and what about the people who are listening who are like, actually, I don't know anyone with epilepsy or I don't, I'm just like listening in where's, you know, anywhere that you would. Send them to or any piece of information that you think is really important for them? Yeah, so there are a few different websites. I know Epilepsy Society have loads of information on theirs. Like I said, young epilepsy do absolutely lowers. And I think it's Epilepsy Foundation where I actually did my seizure first aid training on there.'cause it's all free. And it's really easy. But I recommend their training as well. Yeah. Excellent. Thank you. Because it's so important because you never know when someone is gonna have their first seizure and it could, you could be there on the train, you could be there next to them waiting at the traffic lights. And so therefore having that understanding beyond the tonic-clonic as well, like looking at the other types of seizures too. Yeah. Is gonna be so helpful for everyone listening. Yeah, definitely. And I think it makes the person that has the seizures feel more comfortable as well. Yeah, that's good. And that's the key. That's key, isn't it? Absolutely key. Yeah, exactly. Yeah. So thank you so much Hattie, for chatting with me and I, yeah, I hope you enjoy Purple Day. Thank you. And your amazing surprise. Where can you remind people where. They can connect with you, especially if they Yeah, of course. So I post every day on TikTok purple days. And you can follow me on Instagram as well and check out my website, which is just purple days.com. But yeah. Excellent. And it's two S's, is it? Yes. Two S's. Excellent. And go and yeah, check out the merch as well and support and share as well. Share this episode. Share something if you've learned something. We've covered about the seizure first aid. We've covered about different triggers. We've covered about the different impacts and going to support groups as well. So thank you so much, Hattie. Thank you. Remember. On Wednesdays, new episodes come out on Conversations With Send Mom, and you can listen to a lot of the older episodes too. We have even a couple from Purple Day last year if you wanna just continue on the epilepsy Purple Day theme. So thank you so much for listening, and I'll see you next week.