The Sunflower Conversations

Making the invisible, visible - living with epilepsy

February 14, 2021 Hidden Disabilities Sunflower
The Sunflower Conversations
Making the invisible, visible - living with epilepsy
Chapters
The Sunflower Conversations
Making the invisible, visible - living with epilepsy
Feb 14, 2021
Hidden Disabilities Sunflower

Epilepsy can affect people in different ways.  Hannah Wilson shares her personal experiences of growing up with the condition - how it has had an impact on her education as well as on employment and her independence. Hannah describes her seizure triggers, SUDEP and how important it is to be open with employers and break down barriers to employment. 

Hosted by Chantal Boyle and Paul Shriever from Hidden Disabilities Sunflower.

Show Notes Transcript

Epilepsy can affect people in different ways.  Hannah Wilson shares her personal experiences of growing up with the condition - how it has had an impact on her education as well as on employment and her independence. Hannah describes her seizure triggers, SUDEP and how important it is to be open with employers and break down barriers to employment. 

Hosted by Chantal Boyle and Paul Shriever from Hidden Disabilities Sunflower.

Welcome to The Sunflower Conversations, where we explore the Hidden Disabilities Sunflower, and its role in supporting people with hidden disabilities.

Paul Shriever:

Hi guys, I'm Paul.

Chantal Boyle:

And I'm Chantal. Joining us today is Hannah Wilson, who has epilepsy.

Hannah Wilson:

Hello.

Chantal Boyle:

Hi, thanks for spending some time with us today.

Hannah Wilson:

You're very welcome.

Paul Shriever:

Can I start by asking you about your health condition, epilepsy, can you just tell me a little bit about it, about what type you have?

Hannah Wilson:

Yeah, so I've got complex partial seizures, which affect one side of the brain, that's why it's called partial. And for me, it's left frontal focus, so where my seizure begins is at the front on the left-hand side.

Paul Shriever:

Can I ask you when you were diagnosed with that?

Hannah Wilson:

I was diagnosed at four and a half, I had my first seizure when I was four.

Paul Shriever:

Goodness me, and I'm sure that would have been something quite profoundly affecting, to everybody involved, including your family, your siblings. How did it happen?

Hannah Wilson:

My mum said that she just got a phone call one day that one of her daughters had had a seizure, as I've got a twin sister. And, it was me, I'd had a seizure just out of the blue.

Paul Shriever:

How does a seizure come about and manifest, is it something that is immediate?

Hannah Wilson:

It could happen at any time, I have them about twice a month at the moment. And it can just come on at any time, which is what is really scary, because I just don't know when it's going to happen.

Paul Shriever:

Do you get any sort of signs, or anything that kind of comes on, that's sort of giving you, perhaps, a warning that something's about to happen?

Hannah Wilson:

With some of the seizures I get what you call an aura. And I get a sudden sense of fear before I'm going to have a seizure and I just know that something's not right, but my brain, it will not let me tell someone, whoever's here. But if my mum's with me, I can't tell her that I'm going to have a seizure even though I know I'm going to have a seizure, it's very strange how the brain works. And I do have triggers, strobe lights, which is photo sensitive epilepsy, also dehydration and lack of sleep, they're the three main triggers. But, they can happen at any time, I don't know when it's going to happen.

Chantal Boyle:

And when you're having a seizure, do you fall to the ground?

Hannah Wilson:

I do, and then I lose control of movement and I stiffen up a lot.

Paul Shriever:

Has this been going on, Hannah, literally since you were four? And you're saying that you have these three or four times a week, did you say?

Hannah Wilson:

When I was younger, it was three to four times a week, now it's once, twice a month.

Chantal Boyle:

How do you feel after you've had a seizure, what are the effects physically and emotionally?

Hannah Wilson:

First of all, I can't get up, I can't talk, I'm just completely unaware of my surroundings. Often I have a lot of injuries, so I'm in pain. If I have a seizure on my back, then I have a really bad backache afterwards. But the bruising that I get from it, sometimes I've had black eyes and cuts, and I'm just in so much pain after a seizure.

Chantal Boyle:

Yeah, and I guess that must have an ongoing impact because bruises are so obvious, aren't they, so I'm assuming that you then have to deal with people looking, thinking why are you covered in bruises?

Hannah Wilson:

Yeah, I've got a lot of scars, and when I was on holiday a couple of years ago, I actually split my elbow open and I split my elbow open two more times after that. So I've got a scar, and it's horrible because it's just a reminder of that seizure.

Chantal Boyle:

It's with you all the time, you can see it. Can I ask, do you take medication?

Hannah Wilson:

Yeah, I do, twice a day. I take, it's called, Lamotrigine, 300 milligrams. And I also take Keppra, and I take 1,000 milligrams and then two 500 milligram tablets.

Chantal Boyle:

That's a lot of medication, isn't it?

Hannah Wilson:

Yeah, it's recently changed, they've upped it and upped it so many times and hoping eventually my seizures will be under control, but at the moment they're not.

Paul Shriever:

Hannah, have you always had the same medication?

Hannah Wilson:

No, I haven't, when I was younger I had Tegretol, and that seemed to work better and I was seizure free for five years. So, before, I was on the Tegretol, and then I came off that completely. And then when I had another seizure, I was then put on the Lamotrigine, which was in 2012. And then they added Keppra because my seizures were still not under control.

Paul Shriever:

Well, I find that really fascinating, is how you can go for these windows of time with nothing. I don't know whether you live in fear all the time of something happening, like a seizure occurring, but if you've had five years of nothing you'd be starting to think am I okay?

Hannah Wilson:

Yeah, I thought that maybe I'd grown out of it. The doctors always said that they thought there was a chance that I could grow out of it because the younger you are when you get epilepsy, there is a higher chance that you'll grow out of it. So, we hoped that I would grow out of it, but turns out that I hadn't, just saying that nothing had triggered it within that five years.

Paul Shriever:

How do you personally deal with it, does it affect you mentally? Does it affect you in a kind of way that affects your mood or does it give you anxiety?

Hannah Wilson:

It does, yeah, anxiety. When I go out, I get really anxious that something's going to happen. I try to go out a little bit more each day, I have to walk to work anyway. And so I'm trying to get out more on days off, but I do get anxious that when I'm out on my own, my gosh, is something going to happen, if it does happen nobody's around.

Paul Shriever:

I mean clearly, your family, the fact that they've been supporting you now since you've had it from the age of four, I would imagine there are practices in place, or there are methods that they must have when you do have a seizure. How have they adapted and changed to looking after you?

Hannah Wilson:

Well, my mum, when I was younger, she had to quit her job and get a job with a closer employer that was more understanding as well, as I was having three, four seizures a day at school so she was having to come and collect me. And then there were certain shops that we couldn't go in either because of the lighting, and it seems that springtime would trigger my seizures more.

Paul Shriever:

You just said spring, as a time of year almost.

Hannah Wilson:

Yeah.

Chantal Boyle:

Is that smell related?

Hannah Wilson:

And also summertime as well I struggle with because of the heat, if I get too hot then that can bring on a seizure as well.

Paul Shriever:

Right, so with time you've become more mindful of what to do, what to avoid, that kind of thing.

Hannah Wilson:

I have.

Paul Shriever:

What about education? At that point in your life, when you were younger, did it have a big impact on your education in terms of preventing you from getting one?

Hannah Wilson:

Massively, it had a huge impact on my education. The school board, when I was in primary school, actually said that I would never get anywhere in life. That really hurt, and my mum as well. I was below average in every single subject, and I had no completed work because I was having to go home all the time due to my seizures occurring so often. And I've got Dyscalculia as well, so math particularly I've really struggled with.

Chantal Boyle:

And the Dyscalculia is an effect of your epilepsy isn't it?

Hannah Wilson:

It is, yeah.

Paul Shriever:

Hannah, clearly you've had some challenges, can you tell me what SUDEP is about please?

Hannah Wilson:

Yeah, so it's Sudden Unexpected Death in Epilepsy, so it's when there's no cause to when someone has died from a seizure. Also, I had a friend that passed away due to SUDEP in 2016. And even though I knew that SUDEP does exist, it really hit me hard because it happened to someone so close to me. And it made me realize just how serious seizures are, that they can be fatal, and I've got to make the most of my life.

Paul Shriever:

Is it a common thing, do you know?

Hannah Wilson:

21 people die a week from SUDEP.

Chantal Boyle:

That is so high, is it irrespective of age?

Hannah Wilson:

No, well anyone with epilepsy it could happen to, but it's more likely to happen to those who have nocturnal seizures. I still get scared because my seizures are not controlled. And my friend that passed away, she'd been seizure free for three years.

Chantal Boyle:

I'm so sorry to hear that, that is really, really sad.

Hannah Wilson:

Yeah, it was really hard because it was the only person that I had to talk to who really understood what I was going through. And then to find out that she'd passed away, and she was a lovely person as well, it's just awful.

Paul Shriever:

It's cruel isn't it, it's cruel. Do you find, being mindful of where you put yourself, what you do all the time, is clearly something that is very, very important. Are you conscious all the time of where you are, who you're with? That thing must be something that is clearly very important.

Hannah Wilson:

Yeah, I can't have a bath. When I go to sleep I sleep on my back, but of course in the middle of the night I will turn over. But, again, in relation to SUDEP, sleeping on my front, if I was to have a seizure, then there's a higher chance if I'm sleeping on my front and I was struggling to breathe as well. And so I'm sleeping on my back, which isn't comfortable, but I'm trying to keep myself safe. But even with having a shower, I've fallen out of the shower so many times.

Chantal Boyle:

What you're telling us, it affects every aspect of your life, doesn't it? You've mentioned about your dear friend who has died due to this. So how does it affect relationships that you have been able to make in the past and now, is that difficult for you or is it easy?

Hannah Wilson:

I haven't really come across anyone that is, oh my gosh, I don't want to be friends with her because she's got epilepsy. Apart from when I was younger, a lot of people back then they didn't understand and they were scared. But now, whenever I tell anyone, they're actually fine about it. One of my friends, she's been around a lot when I've had seizures, and she's been amazing. In fact, that's probably why I haven't died sometimes because she's been around to help me, and she told me that one time she found me on my back choking.

Paul Shriever:

Hannah, can I just jump in, are you aware of anything when you're having a seizure? Can you get somebody's attention or is it literally you are gone?

Hannah Wilson:

Completely gone, although sometimes I can hear. If I've got someone with me I can hear them talking to me, which actually I really don't like, because I can't respond. And that's really quite scary that I can hear someone talking to me whilst I'm having a seizure, but most of the time I'm completely unaware.

Chantal Boyle:

Do you have a job, are you working?

Hannah Wilson:

Yeah, I work the usual five times a week. I work later on in the day and into the evening because of getting up too early, that could trigger a seizure. And they're really good about it, I told them straight away in the interview. Because I know that some people are scared to tell a potential employer, because they think that maybe they will not take them on. But for me, I think it's really important, and I would encourage anybody to tell a potential employer, it's so important. And when I had my interview they were thinking about where they can put me for my safety, and they've been so supportive.

Chantal Boyle:

That's really great to hear that because disability is such a barrier to employment, and I think whilst people are not having open and honest conversations, it will continue to be that way. We all have a responsibility to educate ourselves on how we can make sure everybody is treated equally, so it's really heartening to hear that.

Paul Shriever:

Absolutely.

Chantal Boyle:

Responding to what you need and being flexible with your times so that you can be able to work if you want to work. And for independence, and connection, and so many things that come from work.

Paul Shriever:

Hannah, have you had a seizure at work?

Hannah Wilson:

I have, when I worked at Costa, it was back in 2017. I had a really bad seizure. I'd gone to clean one of the toilets because it was getting towards later on in the day, and I fell forward onto hard flooring and I cut the top of my nose. And even though it was such a small cut, which I didn't realize at that time, my face was covered in blood. And when I came around I managed to pull myself up with the sink, and then when I looked in the mirror and I saw all of this blood, I was trying to wash it off and it just kept coming. And my hands as well, like the sink, was all covered in blood. And I managed to get myself out into the back of the staff room and they called an ambulance straight away, but that was just so scary.

Chantal Boyle:

Yeah.

Paul Shriever:

I bet, does a seizure last long? Can you just tell me how long a seizure lasts for you typically, or is there a typical time?

Hannah Wilson:

Usually about 30 seconds to a minute, but sometimes it has been up to two minutes.

Paul Shriever:

Does it seem like a long time? I'm sure it seems like a lot longer for you.

Hannah Wilson:

Yeah, and just those 30 seconds or minute or two minutes, it can make so much of a difference. So to think that short amount of time, and then as a result I'm not able to walk or talk. And it's not just the seizure, people think oh, that person had a seizure and now they're fine. I know, people are, it does take time, there was the recovery process as well.

Paul Shriever:

So once you've had your seizure, are you exhausted? What is the fallout from that?

Hannah Wilson:

Yeah, it does get me really, really tired after, but often the seizures happen at home rather than at work or outside. So I'm at home anyway and I will go to sleep afterwards, but wherever I am, I still end up injuring myself.

Chantal Boyle:

This is an incredible condition, it really is, isn't it? I mean, the brain is what functions our whole body.

Hannah Wilson:

Yeah.

Paul Shriever:

Absolutely.

Chantal Boyle:

What do you think about The Hidden Disability Sunflower, Hannah? Do you have any thoughts about that?

Hannah Wilson:

I think it's really good, it really stands out. And people that have got a hidden disability, you see it and you think, oh yeah, that person, they have a disability, if you're aware of Hidden Disabilities. For me, I've seen a lot people wearing the sunflower lanyards, and so I know that they've got a disability, and when they come into [Aster 00:17:59] then I'm aware of it. And I think it's really important for people who've got a hidden disability to wear the lanyards, and I think it does really stand out, it's really good.

Chantal Boyle:

Looking at you, there's absolutely no indication that you have a disability, I mean, I just would not know. So, what we've been doing, is we've been working with the Epilepsy Society to raise awareness of epilepsy and safety, Calm Cushion, Call. And what we've wanted to do, and why we've really enjoyed talking to you today, is to raise awareness that there are lots of different types of seizures. It affects people in different ways. I'm sure if we spoke to somebody else tomorrow, their story would be slightly different. This campaign leading up to International Epilepsy Day is really, really important, and us being able to share your story with everybody will hopefully really make a big difference.

Paul Shriever:

Absolutely, how have you found daily life in general, since this pandemic? It's been going on now for quite a while, has it affected you and how has it affected you?

Hannah Wilson:

It was a few months before I started working again from my previous job, so I was sitting at home and I'd think about my seizures even more. And I would just have so many days where I'd feel really depressed, and the fact that it's really hard to get work and also with my epilepsy, trying to find a suitable job. So I think yeah, because it's been so difficult to find work.

Paul Shriever:

Very difficult, isn't it, for a lot of people at the moment? It really is a very challenging time, especially in that mental health kind of way.

Hannah Wilson:

It is, and also because I need supervision with my epilepsy. So not just having my mum, but also my friend, the one which has seen me have seizures quite a lot. She will help out sometimes during the week to make sure I'm okay. And what I do worry about, is she going to get stopped by the police wondering why she's out? And I've said to her, if you do get stopped, just make sure you tell whoever that you've got a friend that does have a disability and needs supervision because I really need someone if my mum's at work. She can't be with me all the time.

Paul Shriever:

Absolutely, Hannah, do you carry something with you all the time so that if you do have a seizure you've got something that people can look at and reference?

Hannah Wilson:

I've got a medical band, and it's got details on there.

Paul Shriever:

Okay, that is specific to your condition?

Hannah Wilson:

Yeah, I've got my name on there, what type of epilepsy I have, the medication that I'm taking, and then an emergency number, which is actually my friend, not my mum, because it's quite difficult to get in contact with her.

Paul Shriever:

And I'll bet you've got, I would imagine, a very tight relationship with your immediate friends and family in terms of supporting you in a network of close people that are there to help you-

Hannah Wilson:

Yeah, I'm a volunteer for Central Ambulance as well, so my friends are really, really good. And I've got a friend that lives quite close to my mum actually, in Berry, and she's really great about my epilepsy. And if I ever go around to see her, obviously I can't at the moment, but when I do, she's even told her daughter that I've got epilepsy and don't be scared if Hannah has a seizure. It's really great to have friends at Central Ambulance because they know exactly what to do and they are just so understanding.

Paul Shriever:

Do you think that people's perceptions of epilepsy have changed over your lifetime? People are slightly scared about people when they have a seizure and don't know quite how to react, is that something that you feel has changed in any way?

Hannah Wilson:

Slightly, but a lot of people are still terrified. When I've had seizures in the street before, and I always only have one person help me, and then I see other people just walking away and I think they're scared. But there is definitely a lot of people, they just don't know what to do, they'll go and just continue walking. It is so important that if you see someone having a seizure, just to stay with them. And if you don't know what to do, just to call an ambulance. Because, as I've said, it can be fatal, and if someone's got serious injuries as well.

Paul Shriever:

Hannah, that's so important, what you just said, I think. And just to hit that home, that what you've just said about how to stay calm, to stay with them and call an ambulance. I think that's clearly very, very important. Is social distancing something that's important to you?

Hannah Wilson:

Yeah, the health and safety for everyone of course is very important. I haven't really struggled that much when it comes to social distancing. I think the hardest place to social distance is definitely in a supermarket, so particularly where I work. The one thing that I worry about is if I have a seizure when I'm in a supermarket and there's this social distancing and people think, oh, I don't want to come close to her just in case.

Chantal Boyle:

Stress, as you mentioned, can potentially be a trigger. So if you have epilepsy and people getting too close to you is making you feel anxious and stressed, it's a potential trigger for a seizure. Unless that person needs your help, in which case you follow the steps: calm, cushion, call. If you're wearing a face mask, which is what the government advised us to do anyway, if you can, then you shouldn't be putting yourself in any danger by helping that person. Call in an ambulance, if necessary. So that's another message that we wanted to help share with our audience. Please don't be scared, please help. But can we just touch on face masks briefly? Do you wear a face mask, because I know that for some people it can be a trigger?

Hannah Wilson:

Yeah, when this first all started I wasn't sure about whether to wear a face mask or not, but I do wear one and I've actually felt okay wearing one. It's not nice having to wear a face mask, and I don't think anyone likes to, but I have managed okay so far. But I know that if I do struggle at all then I can be exempt from it, but at the moment I'm okay with wearing a face mask.

Chantal Boyle:

What would you really hope that comes out of this, sharing your story with everybody?

Hannah Wilson:

I really hope that people will understand epilepsy more in the future and will become less scared. I know it's not nice to see. I've seen someone have a seizure myself, and I know it's scary, but just to please help that person. It's so important, don't leave that person on their own.

Chantal Boyle:

Is there anything that you really want to do that you literally can't because of epilepsy?

Hannah Wilson:

Driving is a big thing, and I think that's for most people. That's the independence, being able to go out whenever. For work for me, when I've finished late at night, I have to get a taxi home. And also with jobs, there's a lot of jobs that require driving licenses. My dream job is a paramedic, and I haven't been able to become a paramedic because I don't have a driving license. Oh, and one other thing, a lot of people sometimes think that it's funny when someone's having a seizure and they try to re-enact it on social media. There was something going on TikTok a few months ago, and people thought that it was funny and there was a seizure thing that people were doing. And I think that's another really important message to people, is that it's not funny, seizures do happen to people, they are fatal.

Paul Shriever:

Hannah, I just completely-

Chantal Boyle:

Couldn't agree more with you there Hannah.

Paul Shriever:

Couldn't agree more with you in that respect. It's been lovely, lovely to meet you, it really has, it's been a pleasure. And just look after yourself, and I hope that as life goes on you're okay, and that you get on top of your-

Chantal Boyle:

Medication.

Paul Shriever:

Yeah, and your medication, and that you can carry on living a quality of life.

Hannah Wilson:

Thank you.

Chantal Boyle:

Thanks Hannah, take care.

Paul Shriever:

You've been brilliant.

Hannah Wilson:

Thank you very much.

Sam Bertwill:

If you'd like to share your Sunflower story or conversation, please email conversations@hiddendisabilitiesstore.com. Find out more about us or listen to this recording again, by checking out our Insights page at hiddendisabilitiesstore.com. You can also find us on Facebook, Instagram, Twitter, YouTube, and LinkedIn. Please help, have patience and show kindness to others and join us again soon. Making the invisible visible with a Hidden Disability Sunflower.