Into Work are excited to bring you the first installments of our Wellbeing+ Podcast! This week we are releasing Living with Epilepsy Parts 1 & 2 where we hear from an Into Work client about their experience of living with a long-term health condition.
You can listen to Part 1 below. You can listen to Part 2 here. We hope you enjoy!
Transcript for Living with Epilepsy Part 1
Host – Hello and welcome to Into Work’s wellbeing plus Podcast. Hi, my name is Felix Slavin wellbeing plus coach for Into Work and today we are speaking with Marta, an Into Work client who shares her own lived experience of a long-term health condition, and how she has approached employment, and day to day wellbeing management. We had a very in-depth conversation. And so rather than publish the interview in filled, we have decided to make this conversation into two episodes. So here you are, the first part of our conversation. I hope you enjoy.
Interview with guest speaker
Host – So Hi, Marta it is really nice to have you on to the podcast, we really welcome you as it is a special session, because this is the first podcast episode that we are putting together with a client involved.
Guest – Thanks for having me.
Host – It’s great to have you on. You’re going to be talking to us about your work and the journey that you’ve been on. So, I thought we’d just start by asking, can you tell us about your experience as someone with a health condition?
Guest – Yeah. So well, first of all, my health condition is Epilepsy. And so, it exists on a really big scale and can mean lots of different things to different people. So, I can only really speak from my own experience of it. But for me, it’s an invisible illness. So, you might not know that I am dealing with it. Unless I were to tell you that or you worked closely with me. Or if I was actually having a seizure. So, in some ways, that’s made my experience of living with it easier.
But it’s also come with some things that I’ve had to navigate. I was diagnosed when I was 12. But before there was a long period of my health not being very good physically and mentally, and no one really knowing what was happening, including doctors. So, before I actually got the diagnosis, I had gone through quite a long time not feeling well. But actually, by that point, even though they didn’t have a name for this thing, it had already affected my life quite a lot. I was having absences, they call them and convulsions or uncontrolled movements, normally in the morning, which the doctors thought might be related to just tiredness or even because I was very young. They thought maybe it was rooted more in a mental health issue, or maybe I was unhappy at school, and these were all these kinds of things they were speculating about.
And it was only when I had my first big seizure -which are called tonic seizures. That was when I was 12. And that was when they could properly start to identify and diagnose it. So, I had gone through quite a long period of anxiety and not really understanding why I felt the way that I did – what was happening to me. And obviously, when you’re that age, when you’re 11 and 12, you’re looking to the adults in your life, to explain to you what’s going on. And obviously that’s not always possible. So it was a bit of a relief to me when I did finally got diagnosed. I know we don’t normally think of diagnosis as a positive thing. But I think it’s just the nature of Epilepsy – it is something that you can develop in childhood. Sometimes it’s quite nice to just actually have a name to something so that you can process it.
Then I started taking medication and that was effective for quite some time. But I think when it comes to the social side of living with Epilepsy that was maybe where things got a wee bit more complicated. It was actually a bit more complicated than controlling what was happening to my body. The hardest part was working out how to deal with it on a daily basis. So the approach at that time – I’m looking back on this as an adult so it’s possible that seeing through a child’s eyes everything is very different, maybe some things are exaggerated -but my memory of it is that I was growing up in a society where people don’t really talk about these things. It was normal to not tell people that I had the health condition or that I had Epilepsy.
As a child, you just you take other people’s lead, don’t you? So, that was a way of coping with it. But that was what I learned. So, for example, at school I don’t really remember teachers ever having a conversation with me about it. And I understand that people make these decisions because they think it’s the best one, but it has had an effect on me. Growing up and trying to deal with life with Epilepsy, it would have been nice, maybe to have it to be clear and honest about this thing that I was coping with. And I suppose to some extent, to be told that you have this illness, that doesn’t make you any different; it doesn’t make you less capable. Life won’t be harder, though to some extent, that can be true for some people, and obviously, is a positive approach, or at least that was the intention. But the catch is that, you keep quiet about it. And it’s turned out not to be that helpful in quite a few situations, and especially when it comes to employment and trying to develop professionally.
And you’ve got this fairly big part of your life and who you are, that you can’t really be open about. So, it certainly affected how I feel about myself as an adult and professionally. And just one more thing about the social aspect of it. So, for me, one of the things that I experience as a result of Epilepsy is sometimes if I’m very tired, or I’m stressed, I have blanks in conversations, or in meetings, or whatever. And so, these are absences. They’re just like moments of blanking out. And it can happen if you’ve got Epilepsy. And obviously, if you blank out in the middle of a conversation, and other people notice, this seems quite antisocial. And other people will think she’s not paying attention or she’s very distractible. And if people don’t know that, that you’re actually dealing with a health condition, and that’s just one of the effects that it has on you. When you’re not able to have that conversation with other people and say: “oh sorry, that’s not because I’m not interested it is actually because I’ve got this health condition”. Those lines start to blur for you as well.
So, I’m really struggling just now. And I think I had a realisation, maybe a year ago, that I was really not sure what aspects of me are just my personality: am I really distractible, is that possible; And what’s the Epilepsy? So what is influencing how I am in social situations, and I can be absolutely sure that that’s not specific to Epilepsy. I think it can be very difficult for people with health conditions to know what’s just them and what’s the illness and where those two things overlap, because obviously, living with a health condition does influence who you are in good ways as well as bad ways. And it’s not an exact science.
Host – So, you’ve been talking there about the stages of development, from childhood going into adolescence, like there was a lot of information that you still didn’t really have access to going through a diagnostic procedure. And there’s different aspects of life that change as you get older as well and you need to adapt and, then almost trying have these sorts of reflections on what that means about us and your identity and who we are. And you were touching there on the employment aspects, some of these questions are going through your mind even today. So, what has that been like for you just in terms of employment and living with Epilepsy?
Guest – To be honest it is something that I’ve really focused on, so what I’ve just been talking about, you internalise these habits, not talking about what you’re dealing with when that is how you deal with it for years and years and years. It is really difficult to unlearn these things and even to know what patterns you’re stuck in. And it is really only very recently that I realised that actually it has affected how I feel in employment and my attitude towards employment. So, until recently, I would only ever mention that I had Epilepsy in forms, if it was for documents that yous had to disclose that thing, or I was ill, or when, something became serious, and I had to be open about it. But apart from that, I would definitely not have mentioned it unless I really needed to. And it does feel like you’re hiding something from someone because it does influence who you are and how you feel.
So anyway, apart from that feeling of not being able to be yourself, or being worried about people. What people will think of you if you really are yourself, or if you really do tell people that you slept all weekend, because you needed to, I found that I just can’t commit to a lot of what’s expected of employees nowadays, and especially when working conditions are not great for many people, people like me and many people, we just look at job descriptions and person specifications and go actually, I really can’t say that this is a normal expectation for me.
So, just to be clear, when talking about Epilepsy, my way of managing it is to maintain a fairly strict routine of good sleep, and regular meals, stuff like that. And so, I need to plan my time so that I can recover, just from the normal stresses of life. I need time to recover physically and mentally from that. And regularly not just once every six months, but I need to be doing it regularly so that I don’t reach fatigue, or stress, which are my main triggers for seizures. When when you live in a world where most people are having to deal with the unpredictability of zero-hour contracts or not being able to take adequate screen breaks because they’ve got targets to reach or people who needed to work overtime and things like that, you just don’t have the option to do that. You can’t actually offer that to employers, and it’s become so normal, that people are in situations where they’re under pressure to do that, or you’re fearful that if you don’t do that, you’re going to lose your job. So, when you do live with a health condition, or illness that forces you to be quite strict about looking after your health. You need flexible working, and you need employment and employers to not only expect you to commit to what they need, but that they also commit to supporting you to be able to work to the best of your ability – to understand what you need as an individual and what your body needs. Unfortunately, that’s a bit of a luxury – when people do have that flexible working and employers who want to listen to support an employee with a health condition or a disability. But that’s the luxury now.
Host – What is your own experience of that in terms of that flexibility with employers and looking at ways to take into account your Epilepsy and your preferred way of working?
Guest – Yeah like I say maybe I haven’t in the past been very good at communicating about what I need, just because it hadn’t been the normal thing in my life. And also, I hadn’t ever been asked really. I have had situations in the past. There was one time where I had had a seizure at the weekend. And I came into work on Monday and it takes you quite a long time or at least takes me personally quite a good few weeks to recover fully from how tired a seizure makes me so this was just a few days after I was going back to work. I thought, I feel really tired and I’m feeling really down and I decided to tell my boss at the time what’s happened and what that meant for me. And that was the first time in my entire life. So, I think I was 28 at that point. And I think that that was the first time in my life that I’ve ever actually just gone to someone’s office and said, this has happened to me, this is what it makes me feel like. I went about my working day fairly normally. And I think it was a conversation that probably they hadn’t had before, I don’t think that they don’t think that there are any other teachers at the school there with Epilepsy. And it’s not that comfortable for people, it’s not that comfortable for people to talk about an experience that they don’t know very much about. And that’s not their fault.
Something that I did think about when I when I brought it up with this boss who was really good about it is that the conversation wasn’t that difficult. And I was wondering, why was I so scared of doing this before? And why isn’t it a normal procedure, that we do have chats about that thing, before employment starts an opportunity to just be open about – about what you deal with, and how that might affect you. And what can be done to help you prevent illness at work, or what can be done when you do happen to be ill: you’re still a human; you’re still an adult; you want to keep your job. What can be done to make sure you recover, that everyone recovers from the situation. And so yeah, I think I thought that the conversation would be much more difficult than it actually was. And I think probably for the employer, I’m quite comfortable speaking about my experience, I think that that helped the situation.
Host – Up to that point speaking about your diagnosis was not something to readily do and people will not necessarily understand that. And, and so, approaching that point of actually trying to speak to someone about it, and in real terms it sounds like it can feel like a very difficult scenario.
Guest – You need to be honest, obviously. But at the same time, you’re always thinking, what does that mean? What are they going to think about me when I tell them that I do sometimes have absences in the middle of conversations? What will they think of me as an employee? if you are thinking about a lot of things, you feel inhibited to be honest about it, because there isn’t a lot of understanding about your condition, and therefore, it can be interpreted in the wrong ways, and that can make you feel quite insecure.
Please help us by spreading the word about our new wellbeing plus podcast, Into Work is an Edinburgh based charity supporting people with physical disability, and long-term health conditions to find and sustain meaningful employment. This podcast is dedicated to sharing the stories of people with lived experience of physical disability, and long-term health conditions as well as their experience of supported employment and wellbeing management. You can also help support us by going on our website at www.intowork.org.uk If you have any questions about the podcast, please email us on firstname.lastname@example.org. Thank you for listening in.