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 2 below. You can listen to Part 1 here. We hope you enjoy!
Transcript for Living with Epilepsy Part 2
Host – Hello and welcome to Into Work’s wellbeing plus podcast.
Hi, my name is Felix Slavin wellbeing plus coach at Into Work. In this episode, we are continuing our conversation with Marta, an Into Work client with lived experience of a long-term health condition. And as part of the conversation, we will hear from Marta on the impact that Into Work support has had on her life, what wellbeing strategies she relies on, and what key messages she wishes to share and raise awareness about living with a long-term health condition. Thanks for tuning in. I hope you enjoy.
Interview section with guest speaker
Host – So, Marta, you’ve been involved with Into Work as a client, and I’d be interested to hear about that experience. So what sort of impact has your involvement with Into Work had on your employment journey?
Guest – It’s been so big. The experience has been so… It has just changed everything really for me, professionally, obviously. But also, it’s been a personal thing as well. I feel like the development has been really holistic, it’s affected every part of my life, not only the professional side of it, which I think just goes to show how big the experience is. So to be clear, the help that I’ve had has been, I’ve had an Employment Advisor, and wellbeing coach. So I’ve had both of those experiences through Into Work, in terms of employment, advice and guidance. In such a short period of time, I just look back at how I felt about myself before. Applications that I might have written before or the interview answers I might have given before, are just completely different. My advisor was able to help me identify the skills I’d developed just in my working life without really realising it. I hadn’t really realised that I had skills.
Maybe the obvious ones, but not the less obvious ones. They helped me to identify examples of it, which I was really bad at before. Even more importantly, how to use those things and transfer them to new roles. And that was really the key for me, seeking jobs that were more suitable for me. Having the guidance that Into Work has given me on transferring my skills and recognising what they are – recognising my strengths.
And the mechanisms, the coping mechanisms that I have developed for dealing with it. And I didn’t really know what they were before. So I didn’t know that, I was actually really good at looking after my own health and wellbeing, I didn’t know that I was good at managing my time, in order to manage my condition. I thought that I was just surviving. So they’ve also helped me to see myself in just a much more positive light as an employee or a potential employee, and how living with a health condition can bring you many good characteristics. I mean one that also brings skills and I think that’s something that I would like if I could speak to my younger self, I think I would like to say to myself “You do realise that you’re actually gaining a lot of life skills by having this [Epilepsy] because you can use that, you really can use that”. And I didn’t realise that before I had all this help to reflect on myself as a professional. So, this service is really important for people who have just been living with or growing up with the condition. And especially in society where it is not normal to talk about it because then you don’t the person with the condition doesn’t get the opportunity to process it and to work with it in the best way possible. You just get denied that opportunity. And that’s it.
And my own background is teaching. I’m used to asking people, or being trained to ask people, the right questions without giving them the answer, and stuff like that. So, both my advisor, and mentor at Into Work, asked me the most amazing questions that led to these massive lightbulb moments, where I just really needed someone to ask me those exact questions at this point in my life. And no, I was never told, you should do this, you need to do that. Or, oh, you should feel this, or you don’t have to do this. I was never told anything about what I should do.
Great guidance and mentorship. And it’s allowed me to develop as a person, to gain confidence and self-esteem, which obviously, in turn, means that you feel like you can, set goals for yourself – that was a really key thing – as well as a result of these sessions is just being able to set realistic goals for myself, which in the end, were not easier goals. I mean, I’ve been able to do a lot more than I thought I ever would be able to do. I’ve been offered a job that I firstly, wouldn’t have been able to apply for. And before I found out about Into Work and before then I just never had even considered being in a situation like the one that I’m in now. So I’m really grateful. And even things like – this probably sounds really stupid – but just knowing my rights (specific to the UK). Knowing what I can expect from employers and what I can ask from them, and what services are available to me, and not just relying on support from family and friends, because not everybody has that. It can be a massive pillar in people’s lives.
And a service like Into Work that is dedicated to recognising and understanding barriers that people with health conditions have or might experience is just like a key, it just gives people a key to understanding themselves and what they need, and what they can have and it gives you independence. And it also gives you the confidence to not only be looking for a job. I think we get stuck into… well I certainly find that looking for work, knowing that I have certain barriers, because of Epilepsy. I think I was just always looking for jobs where I would be able to see that I would get the job, or I would work with the employer without facing any of my barriers. Whereas actually, as I’ve understood more, if I’d had more positive experiences of barriers being dealt with, rather than just divided, I might have been able to progress in my career more quickly. If I had also felt that I could apply for jobs, and adapt them to suit me and ask employers by having that open conversation about actually, this is my situation and I need this. Is it possible to be flexible about this aspect of work or to be thinking also, the jobs, and employers also can be working to adapt to people with health conditions. It’s doesn’t have to just be a one-way thing. And that’s been a really big change in my perspective as well, which I, again, wouldn’t have had without the guidance that I’ve had. So, I’m number a one fan.
Host – Yeah, it’s lovely to hear your account of Into Work’s support for you and it has made you feel validated and also supported your employment journey.
Guest – It’s so true. And this is my own experience. I have friends but I actually don’t have any other friends with Epilepsy, but I have friends with other health conditions, who I connect with on many levels. Also on the topic of normalising these kinds of conversations. And it’s so important to so many people.
Host – Yeah, what’s really been quite apparent in this conversation is the importance of clear communication. And when you get that opportunity to explain what’s going on for you, it does help. It’s a really good strategy to build upon. And I just want to lead that into another question. You’ve touched on wellbeing and different coping strategies that you’ve put in place, but what would you say are the key wellbeing strategies that are important for you?
Guest – The point at which my health deteriorates is when I’m dealing with a lot of stress and a lot of tiredness, like fatigue. So, knowing that has made sleep my big interest. My stress is really dependent on having a really good night’s sleep. I mean, it is just really good for you anyway and I think when you’ve got a health condition where fatigue is a bit of a source of anxiety, that’s just been my key to life – as long as I know that I can get a good night’s sleep, I feel like I’m just minimising my risks, my vulnerability. And I think that probably is quite a useful thing for people with lots of different health conditions. That’s been my my big one. And after that, I think what is linked to the sleep thing is just having a home where you feel really comfortable. Whatever happens during the day, whatever happens at work, whatever happens in your relationships, you’ve got your safe space to go home to, you don’t have to let anyone in there and you don’t have to let anyone or anything negative into that if you don’t want to. So that’s been a huge thing for me as well. Makes me think, how life could be improved for so many other people, not only people with health conditions, but maybe people who can’t work, people in low income families or people who just can’t feel good in their home. If you feel safe at home, and you can trust that you’re going to have a positive time there, that sets you up for so many things in life, it makes you feel better about yourself and makes you feel better going out dealing with the day. And I think it’s just a bit of a human right. To be honest, I don’t think anyone should be in a situation where they can’t have that. Knowing what makes you feel like you can rest, which is probably the key words actually being able to rest well.
Host – Well, thanks for sharing that with us, Marta. And just to wrap things up, I’m curious to know what are the key messages that you wish to get across? Primarily in raising awareness about living with Epilepsy while navigating employment, and I guess, just life, In general?
Guest – Yeah. I think probably what I’ve been talking about is that when nobody talks about a health condition, or health conditions in general. For example if there’s a situation where I’m an employee, and I’ve got Epilepsy, and I don’t talk about it, but nor do the employers, or no one feels like they can talk about it. It just feels like a vicious cycle of no one ever understanding each other. People don’t know much about Epilepsy, and that’s okay. I mean, there are many health conditions. And there’s a lot to know. And in some ways, it is difficult to understand everything. And it’s difficult even for a person with Epilepsy and other health conditions, I’m sure to work out why they’re getting ill – what are the causes? Why is one medication working, but the other doesn’t.
When I was 16, I lost my hair to medication which had been working for four years. And it was suddenly my body just started to hate it and you have this new problem. And, it’s not about fully understanding something, it’s just about communicating about it. And it would make life so much easier for everybody involved, not just for the person with the health condition, but for the people around them. If others just knew – if we could just tell people that we have a health condition – and they wouldn’t be in a situation where they needed to freak out or that they had flashbacks to images, like unrealistic images of what seizures actually are like for people with Epilepsy. That wouldn’t happen if we had an open conversation about it, because we would all just be a bit more literate about it, and we would be able to ask questions. It is an uncomfortable conversation, because it’s a conversation that we don’t have. And that’s actually okay. I think we shy away from difficult things, and uncomfortable conversations, which is understandable. But it’s also not that big a deal. It’s not really that difficult. And I think, to put it in perspective, for everybody to be able to have conversations about things that they don’t know and don’t understand, to just be open to having a conversation and to being sensitive, by having the conversation, that is a much easier change to make. That’s a much easier thing to do, than it is to live with a condition itself.
So, the person with the condition we’re already doing the hard part, to talk about it can be normal, that is a normal thing that can happen. I have done it, I have initiated those conversations, they’ve never gone badly. If anything, , everyone learns something, it improves relationships. And I think the key there is that no one loses anything in that situation. Because if it’s in a work situation, then your colleagues understands you better. For me, it takes away a lot of anxiety, I feel like I don’t have to mention that part of myself or not going to be a part of my life. And that no one loses anything from that. So, I think it’s really about just changing everyone’s perspectives of it. And it not being a situation of thinking people don’t need to know about my health condition. When actually, maybe it helps you if people do know about your health condition. And if we change your perspectives and make this something that it’s okay to talk about, and it’s okay to know about having been taught.
Or maybe it wasn’t their intention to teach me this. But I learned that people didn’t need to know about my Epilepsy. And so, it was really, really crucial. If we just stopped thinking that way. And if people stopped thinking, or my employees will only tell me when it’s really necessary, like when they’re actually ill, or they actually can’t come to work or they actually need help with something. If we stop thinking that way, and just have it all out in the open from the start. Less can go wrong. People can feel safer. Employees can say employers can put things in place to ensure that
their employees are able to look after their health really, really well. So, I think with a new perspective, that can be possible. And if we prioritise that, I think that the change can be made very quickly. I’m pretty sure that when I’ve had these conversations at work in the past, that all it took was that conversation to change things especially if another employee comes along, that does have Epilepsy, there’s already that flexibility and understanding there. So, it doesn’t actually take that much to change it in a positive way. Normalisation is the way forward, I think just talking about it, being more literate by it, everyone benefits from that.
Host – Thanks for sharing that. Marta. You highlighted that the key here is being honest and communicating, having those conversations.
Guest – Part of what I feel is really important to say about changing perspectives and normalising health conditions like Epilepsy and normalising the conversation about them. I think something that could help with that is to not only be open about the barriers and the issues, which are extremely real and can be very difficult. But we can deal with those and also talk about how living with a health condition or an illness or disability teaches you stuff and you have to learn a lot and you have to be strong and that those are good things So if I’m speaking from my experience, I’ve had to live healthily. When I was a teenager I just didn’t have the option to go out and do what everyone else was doing, which was stay out late, drink lots of alcohol, and not really be in control. I mean, I did have the option, but it was either I chose either that or having a seizure. So, I was forced into living a healthy lifestyle. And maybe as a teenager, that was quite difficult, because I felt isolated and left out and whatever.
But as an adult, I am very grateful for that. I’m grateful that I haven’t put my body through certain things. I’m grateful that I’ve surrounded myself with authentic friendships, which has been a massive thing in my life. I feel like, as young people and teenagers we all go through, we think that our friends are friends until push comes to shove, and we realise they’re not actually really going to be there for us. But I never really had to spend very long learning that and I would know, I knew who my friends were very early on. And that’s helped me through life. I remember being in hospital, anyone with Epilepsy will know what I’m talking about. But they put this cheese stuff on your head, I think that’s because it looks like cheese, it looks like Philadelphia or something and they put it on your head so they can see what electrical activity is happening in your brain. They put these wee plates on your head, and they have to stick properly on there anyway, they put this cheese stuff on your head, that’s what we used to call it. And a friend of mine from school, came and visited me when I was in for tests. And I was sitting on my bed with this cheese on my head and all these wires coming out of me. She came with these Scooby things. I think they were little plastic threads that we used to make we bracelets. And she came with a big bag of these and sat on my bed and just stayed with me for hours while we were making these. And she didn’t even look at me differently. She didn’t even comment on the cheese and wires in my head, she just came down, knew that I needed some company, sat in my bed and stayed there for hours. And I was well impressed.
I was very young, but just knew that that was a legend of a friendship. Right there. And, that’s a really great thing to learn early on in life is to identify who are the people that are actually going to stick around and stand up for you. And so, it’s a nice thing to learn those things and to be resilient. Those hard times where you do feel like things aren’t going your way, and you’re just getting one challenge after another, you gain a perspective about what happiness is, and where you can find happiness, I really don’t need very much to feel happy. And that’s a really great thing.
And we should, as a person with a health condition, but also as people without health conditions or with different health conditions, we should recognise the beauty in that to have really true friendships and to have to be very honest about who you are, what your challenges are, what you live. And that’s really admirable. And I think that we should be told that more. I also think that when we do have these conversations, why not also share the great things about having a health condition and the things that you learn from that. And the stories also – it’s not all terrible. And it is a human experience. And with all other human experiences, there are good things and bad things about it. It’s just another human story. And I think it’s nice to tell them and to listen to other people’s ones. That’s all I wanted to add.
Host – Well, Marta, I think that’s a really nice place for us to end. And just, again, thank you so much for your time today and sharing your story and we really appreciate you taking that time to speak to us today.
Guest – Thank you so much for having me. It’s been really good. I’m very excited to hear other people’s stories as well.
Host – Absolutely. Yeah, we’re excited about it. Having the podcast grow and develop. Great, well, we’ll leave it there and wish you well and take care. Thank you
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 www.intowork.org.uk If you have any questions about the podcast, please email us on email@example.com. Thank you for listening in.