James: Hello and welcome to the I’ve Got This Owning My Epilepsy podcast series. My name is James, I’m 22 years of age, living in Sydney, been living with epilepsy since I was 18. I’m here with Kaitlyn and today’s episode is Bring Home the Bacon, where we focus on living with epilepsy within the workplace.

Kaitlyn: I’m Kaitlyn Parratt. I’m a neurologist, an epileptologist working in Sydney, and I have a special interest in looking after young people and women with epilepsy as they navigate different periods in their lives.

James: I work in the construction industry, so I am on a job site, and job sites are very dangerous. When I did start my job, I probably was a little bit hesitant to tell people that I had epilepsy because I would think people would think I was going to have a seizure so often or they don’t necessarily know what epilepsy is.

You know, when I’m at work, and I’ve told someone I have epilepsy, you know, it’s fine for them not to necessarily understand what epilepsy is straight away. So they may think, Oh, so you have seizures all the time, but it’s it’s not the case. And when you, you know, explain that to them. Now, I understand. And, you know, there are protocols that are in place on a job site, and there’s nothing to be hesitant about.

My employers, my peers were like, curious as to what it is and how it affects me when I’m at work because I do long hours. You know, they wanted to understand what can affect it. So I did outline, you know, the contributing factors that can lead to me, you know, saying you have an event or a seizure.

And then, you know, developing people’s understanding of what it actually is. And it’s not necessarily for some people. So frequent and it’s balanced with the medication and the work environment and just understanding and, you know, developing a better understanding of what actually epilepsy is.

And it doesn’t affect your daily lifestyle to an extent at work.

Kaitlyn: And they’re all really good points. And I think when it comes down to disclosure and some people with epilepsy might be reluctant to disclose to an employer, particularly if they’re being interviewed for a job or what have you and that really comes down to fear of discrimination, which like it or lump it, it exists. There is stigma about epilepsy, but most of that is due to, as you point out, not understanding what epilepsy is.

You know, seizures occur in an episodic way. They start, and they stop. The vast majority of the time you’re going about your business and that will be the vast majority of the time you’re at work. So I think disclosure is ideal, but that’s got to be balanced with, you know, ensuring lack of discrimination and lack of opportunity and then disclosing and providing good information, like you said, I have epilepsy.

This is what my epilepsy is like, likening it to something that maybe people understand better, like asthma or diabetes. You know, people with asthma trot about doing their normal thing. They might have an asthma attack, it stops, they go back to normal. You know, in the case of people living with epilepsy, looking for jobs, that’s much the same thing.

It’s just that it may be a condition that’s less familiar. It might be a bit more scary because the person loses consciousness or what have you. So, I guess providing education and even support. So, you know, as a neurologist, looking after lots of young people looking for jobs, I’ll say, look, I’ll write you a letter of support explaining that this is what the type of epilepsy that you’ve got and that you’re very capable of doing a job.

So you’ve got that ready in your pocket, give you the tools to explain what’s going on, give you contacts. So there’s not for profit places that will come into workplaces and help educate them if you’re worried about people being afraid of seizures or epilepsy, or how you have to manage it. So there’s lots of things we can do. Unfortunately, the stigma side of things, we’ve still got a lot of work to do, but as you say, disclosure is ideal because then you can explain everyone feels safe, you’re supported, and you’re all in it together.

Then, rather than it being this mystical thing or something that anybody’s afraid of.

James: Yeah, I think disclosure is important depending on your situation in your environment, basically, I’ll lead back to me in my job, you know, on a construction site. It is dangerous. And I wanted to disclose because in the event that something does happen, people need to understand what to do. Why, and, you know, just being open,

But once you, you know, develop their understanding, you see a very positive change. And it also make you feel better, more confident in the workplace. You don’t have to worry about certain things. People understand much more and that, you know, it just creates a, you know, positive environment.

Kaitlyn: And you’re right. And some of it depends upon the type of role, as you say, in construction. It’s really important because you got to have safety stuff in place for you and your workmates. In other jobs, it may not be as much about the risk of, you know, harm if a seizure occurred, but again, about people understanding it.

And really I think the people living with epilepsy to point out to people who lack knowledge about it, this is a really common condition. You know, 1 to 2% of people around the world have epilepsy, and yet it’s still something that, as you would have experienced, a lot of people just haven’t really heard much about. People don’t talk about it.

And that is based because of the sort of historical stigma that was associated with it. And I think the great thing about now is that people are willing to talk about it and understand that it’s a chronic disorder, but it’s something that’s infinitely manageable. And most of the time you’re trotting about going about your business if not all the time.

James: That’s exactly, when I was diagnosed. And to be honest, I probably had the, you know, the same stigma as well. And I didn’t know, you know, how common it is within society. And it’s not necessarily a condition that you have that is, you know, drastically impacts your life. It’s not going to hinder your life to the extent that you think you are. Having that support.

And realising that you’re like you’re not the only one. And it is quite common and that there is millions of people, you know, dealing with epilepsy daily. Once you just have that insight and that stigma is gone, you’ve got to accept the fact that people don’t understand because the average person doesn’t. I didn’t. I had no idea. And then once you or my case experience that, it’s very different.

But even my family, my friends and my peers and work colleagues, once they understand it really changes.

Kaitlyn: It is a light bulb moment. I think understanding and understanding the different types of seizures people might have. It’s not just a big convulsion. You know, I always say it’s not just the Grey’sAnatomy convulsion. There’s lots of different types of seizures. And talking to patients and families and even, you know, friends or family of mine and explaining this, it is a light bulb moment.

It’s like, wow, okay, I get it. And even for us as neurologists, you know, we see people having seizures all the time and sometimes we’re like, wow, that’s a seizure. You know, these things can be really variable. And understanding that and putting that into the context of understanding what a potential employee has, you know, can be really empowering, I think, for both the employer and the employee.

James: Yeah, I was at work and I was a little bit hesitant because when I was applying for jobs, many jobs may ask you for a medical before you apply. And I was hesitant, basically because of the fact that, you know, it’s a job site and I’m leading a lot back to construction, but it is a job site and there’s factors that lead to it.

You can’t necessarily hide it. And I was scared that, you know, maybe when I am employed, there’ll be limitations for me in my job. Maybe they would like, you know, try to minimise my time on site just for safety reasons. But that’s really not the case. You know, you’re probably not even the only one in that job that has epilepsy.

You never know. So this is not necessarily something to worry about when you’re applying for a job. There’s in every industry and every job, there is people suffering, not suffering, you know, dealing with different conditions. Just because you have epilepsy, you’re not different doesn’t change the way you work. It’s not going to affect your work drive. You being well at your job, you doing your job.

Kaitlyn: There are a lot of silent disorders, as we call them, where you look perfectly well on the outside, but you do have something that you have to manage, whether it’s with medication, lifestyle changes and the thing that you said about you have no idea what everybody else around you is dealing with or managing is a really important one.

And we often say, you know, even if you think about someone getting upset, you know, excessively upset about something, I always try to think what’s going on for them. And what you said is right is if you’re staying in the workplace going, okay, I’m living with epilepsy, oh it’s making me feel like this or that, Hang on a minute.

I wonder what all these other people are living with or managing. Maybe they feel just like me. If you put it into that context, it’s a really nice way to level yourself out and go, yep, no I can do this, I can get on with this and be a part of it and progress and perform and do all those things that I want to do.

Kaitlyn: It shouldn’t stop you fulfiling those, you know, dreams that motivate you in your day-to-day work.

James: It shouldn’t hinder your motivation. You know, everyone deals with something every day. The average person, no one, no one says no one goes through nothing. Everyone’s going to go through say a bad time or trauma or have those negative thoughts in any condition or even just in a simple mindset, there is always bad thoughts, and there’s always good thoughts and just developing, you know, methods to, you know, enhance those good thoughts and then put those bad thoughts behind um. 

Epilepsy – It doesn’t it shouldn’t hinder anything, anything related to your work motivation. And you’re not the only one. Just like I said, there is many people that are dealing with many different things. You’re going to have a good day and you’re going to have a bad day no matter who you are, what you’re you’re living within. You know, if you’re suffering from anything, no one has a perfect day every day.
James: It’s impossible. That’s life.

Kaitlyn: And I think it’s also important to point out that the vast majority of roles and professions can be done by people living with epilepsy. And there may be very specific niche professions where it may preclude you from following that. And that can be really challenging for someone who might have thought they wanted to be a fighter pilot all of their lives.

The things you’ve said like this isn’t what you expected to happen, you process it, your pivot can actually be a really positive thing in life because that can be a really hard part of being diagnosed as a young person with your hopes and dreams and aspirations. And if it did impact any of that, a way of approaching it to think, okay, not what I planned.

James: Yeah.

Kaitlyn: But life’s not always like what I planned, and I can gather support, pivot, and this could actually be something that enables me to pursue something that I never imagined or thought of that makes me just as, if not happier. And that’s a really hard thing to do when you’re dealing with a new diagnosis and processing through having to take medication and change stuff.

But that’s a really, really important point you’ve made is pause, you know, process, pivot to this new situation that you’re in and always keeping a positive mindset as you can. Do you think seeing a psychologist is helpful in getting your head around those sorts of things? Do you think that would be helpful for people?

James: I guess, yeah. If seeing a psychologist would help and does help on, you know, like I said, you know, opening up and disclosing and seeing a psychologist will help you, not just in that sense, in every sense. Epilepsy can lead you, just like Kaitlyn, said into many different avenues. You may find something that you didn’t know you could do well and you could, you know, you could become really passionate about that.

With the psychologists, they can they go in the right direction. They can, you know, understand what you’re feeling and then outline ways that, you know, you can benefit from. And it’s not necessarily just going there to speak and, you know, try to work something out. They really do help. And I guess, you know, seeing a psychologist leads you in the right direction and then just helps you mentally in always being in a positive mindset is hard.

No one’s going to be positive once all the time. The psychologist will help you have a positive mindset more often or will provide you advice on how to, you know, contribute to be more positive and things that you can do to make you feel happier, more positive, motivated. And there’s probably a stigma around seeing a psychologist, but these people provide, you know, a lot of support networks and then things that can lead to you progressing further in life.

And it’s nothing you should be afraid of.

Thanks for listening! Don’t forget to share and subscribe, so you can catch our next episode, “Drive to Drive,” Where James and Kaitlyn discuss driving and epilepsy.

This podcast has been produced by Lateral Connections with support from Eisai Australia. The information in this podcast is general in nature and not intended to replace the advice of health care professionals. Please see your healthcare professional for any specific advice.