I know that it can’t be used as grounds of disability or anything, and discrimination. Generally I’ve not had a problem sort of when I’ve worked over the summers and things. No, my employers have taken it on board as well if I’ve explained what, if it might affect my work. I’ve never tried to be a you know, kind of a heavy goods vehicle driver or anything, which I don’t think legally I’m allowed to do, and I’m not allowed to join the army, and things like that, so it’s more sort of being aware of the professions that I can’t go into. Which I don’t think I was gonna be a heavy goods vehicle driver anyway, but it’s things, limits on what I can do and in the jobs that I can do, that I can’t be discriminated against. But I mean I’ve never encountered one, but if I did, then, sort of it would, they would be in the wrong rather than I would be in the wrong.

Does employability concern you at all?

Generally its okay, I think it’s because its quite a subtle thing that I never feel it’s gonna be kind of something that would be very noticeable, because it’s not very noticeable. As long as I can to say to an employer, these are the kind of seizures that I have, I cope in this way, all I need you to do is to be aware of it, then I’ve never had a problem, so kind of think that I’ll have more problems in the future with it.

Unless you suddenly decide to be a heavy goods vehicle driver [laughs].

Yes [laughs], but there’s a list of my neurologist ran through one day, I was like, ‘It’s okay, that’s alright.

I think having it, just having the form there, and then putting the application process through can be depressing that can be stressful itself. Just having to go through that process and knowing that you have to go through that process of being screened and kinda knowing how the Civil Service works as well, ’cause the Civil Service works in terms of how you, you can get a job within the Civil Service and they have to give you an interview if there’s a Civil Service job up because that’s what’s politically correct now. But it’s not like you’re going to get the job but you have to apply for a job so I resorted applying for things like there’s a special branch Police Clerical Assistant job up, I applied for that, it’s like a thirteen page application form and I know that I’m not gonna get any response for that, I’ve filled in forms and three, four in a week and just heard nothing. Just done that for months at a time, doing that.

It’s the initial looking for work, do I tell them? Do I not? If I tell them then I haven’t got anything to hide but if I tell them then I might not even get the job to start with. If I don’t tell them yeah I might get the job but now I have to try and dodge everything around what’s going on in my life, like if I’ve got an appointment, I may have a wedding to go to. Now is that appropriate for work to lie, and specially where it’s not a comfort zone job, like at the moment I’m a student so I don’t really mind what I’m doing, you need to get more career focus you don’t want to be living a lifestyle of having to lie and stuff like that. ‘Cos I’ve been out of school so I have tried finding a career and it was just impossible.

Especially living in this area, it’s not exactly an opportunistic place for young people so, yet again there’s that barrier of where you live and their acceptance, the younger people and stuff like that. Also the barriers being narrowed, ‘What can I do?’ Obviously if you’ve wanted to be a truck driver all your life well all of a sudden that goes flying out the window. I personally, my sights weren’t very high as a child, I wanted to be a teacher, so it wasn’t like a rocket science or anything like that, I just wanted to be a teacher. Now it was, ‘Am I ever going to get through the education?’, I didn’t know whether it was appropriate to work with kids, would I be allowed to work with children, then it was well it was the fact of when I was actually working, it was constantly getting fired, due to me not telling them. All of a sudden I would have like an absence or something like that and it was, it was back to the drawing board constantly. I think one thing that does highly frustrate me because I’m looking for a job now just sort of a weekend job and it’s just the fact that yet again no one understands, like people’s different reactions to you applying for a job and obviously now with our culture of suing, and health and safety that’s made it a lot more difficult for well anyone with a medical problem to get a job. It’s yet again, is it okay for us to employ you, and it’s an incredibly frustrating with stuff like that.

Well the RAF and Army. I was looking at joining them, but if you are epileptic you can’t join them. I was looking at joining the ambulance service. But you’ve got to be able to drive, but then again though later on in life I’m able to, I may be able to do that. There’s no point worrying about it about the moment. But instead of doing like ambulance service, you’ve gotta be able to drive, I looked to doing nursing straight away. It was something that you know caught me eye as well. Driving is not needed. But I don’t think, in some jobs, I don’t understand that being epileptic can affect your actual jobs. But then in some jobs I don’t think they can say, oh you’re epileptic then you can’t have the job. So far the ones that I’ve applied for I’ve wrote down on the application that I’ve got epilepsy and they have been okay in the last two jobs. But obviously in the Army and the Navy, the Army and the RAF I was taken off the list straight away.

How do you feel about that?

It did upset me a little bit. Because I thought I want to work in the Army, follow me uncle’s steps but like I say I got over it. I looked into it more and I thought I could do this job instead. Instead of going into Army to be a nurse or to be a paramedic I can do it in the local hospital. So that has been okay. But sometimes when I do look back I think oh I could be doing this job if I didn’t have epilepsy, so but otherwise now I’ve got over it. I’ve got more targets to do.

And maybe something kind of in a similar area you can do.

Yeah, same job. You might see more people working in hospital than working in Army. You might be meeting different people each day.

Work, after they [in work] realised [after a severe seizure] how serious it was they were very, very funny with me. Whether it was to do with insurance, whether it was to do with health and safety, I don’t know, but they watched me something rotten so they could, I think, find a reason sort of get rid of me. And they did for a really, really petty thing and told me that I could either leave of my own accord or it would go through a serious case as to something. So I left of my own accord and finding work after that was very difficult. There’s a few times even though companies can’t discriminate, there’ve been a few times when they’ve discreetly discriminated, by going in there explaining the whole of how I can work for them, what I could do for them. A few times they’ve said, ‘Yeah that sounds great, ideal pretty much of what we want. Then at the end I’ve explained about the epilepsy, and it would, their face would change and it would be, ‘Okay we’ll get back to you. A few times I’ve just thought to myself ‘I don’t really wanna go through all that hassle and then say it at the end if it’s not gonna be’, you know if they don’t want me then fine.

I’ll probably be doing, after I’ve done my, when I do my work prep, I’ll probably be doing more of it than now, at the [shop name]. I’ll be doing more now ‘cos I’m going onto a bigger one now, so there’ll be more stuff to do. And they might put me onto a till, I’m not saying they will, ‘cos he’s saying I’m very good at working. And I’ve been working very good he said. And he’s impressed with me.

What do you do in the shop?

Stack the shelves, I also get the, we also, you know rather than doing the trolleys we have baskets and I have to do all the baskets put them back there again. Always back to the place where they’re supposed to be to the door, gotta do that.

The time when I was actually going into hospital, having the embolizations, having cranial surgery, I was like working, officially. I was on the books, I was only getting paid while I was in the hospital. But I mean, they were really understanding, they said, ‘As long as you’re fine, as long as you’re healthy, come and work for us. Whenever you’re not fine, whenever you’re not feeling good on a day, whenever you’ve got to go to hospital, go home, go to hospital, do whatever you need to do. We’re fine with it, we understand, you know. I think that I was really lucky to find them.

I’ve had about three fits in that office, and they always always deal with it. The whole office just get folders and gets up and oh don’t start getting in a panic, okay. The woman who runs the health and safety is very understanding about the whole thing, and she appreciates my condition and knows about it, so she knows, [excuse me], I sit down and get them little arms you know how they’re adjustable, bumpf, up goes the arms of the chairs so I don’t fall off the chair. And she gets the fan out, she fans us with a book and all that sort of thing and then calm down and she says, ‘Well are you okay?’ Obviously after it I go home, but I mean you say you know, you’re your parents, should I call, what do I do about it? So I mean they’ve always been understanding, and about breaks, and like having to take the day off, and then like having to take the day off after the fit in order to recover properly and then work again. I’ve in fact operated on reduced hours for quite a while; I worked a 28 hour week instead of thirty seven and a half, which is quite, which is very good actually, so it just happened, I mean I had to deal a whole lot less really.

I was working with two of my friends and I was a bit naughty and I was doing a night shift which I shouldn’t have been doing but I was very skint at the time. I was doing a night shift, and I obviously can’t always tell when I’m gonna be ill, you know, and I’d gone to speak to somebody and I came back and I was trying to tell my friends, my two friends the story, it was two of my closest friends I was working with. They were looking at me, they were looking at each other, and they were looking back at me, and I was like, ‘What?’ And they were like, ‘Becky you’re not making any sense’, they were like, ‘You’re talking absolute nonsense. And I was like, ‘No I’m not, I’m making perfect sense. And they were like, ‘No, no, you’re talking nonsense. They were like, ‘We think you need to go home. And my night shift was like from half past ten at night till about six in the morning or something, and it was going fine you know for weeks I’d been doing absolutely fine and I was getting a bit cocky and I was like, ‘Oh yeah, it’s fine. I can do a night shift. But they said to, and they said to me, ‘No,’ you know, they said, ‘You need to go home, your eyes are going funny, and you’re not talking in proper sentences,’ and they both sort of went and spoke to my boss and they said look you know, she needs to go home and they sort of sent me home and put me in a taxi. And one of my other housemates put me to bed, they’re pretty good, most of the time. Whenever I’ve got a job I always make sure that I tell my bosses and things like that because I always think that it’s just not worth lying about it, because if something does happen and nobody knows then you’re screwed really, it’s always best to make sure. But everybody I’ve worked with has always been really good, and I’ve never ever had a seizure at work when I’ve been employed. Like I said my friends have always been really good and they always watch out for me, so, other than when I was at uni. But everyone else has always been really good.

Yeah, I’m hoping to be going back to work next year. I’m looking into going back to work next year.

You said you’ve had quite bad experiences with employers.

Yeah, I mean it’s gonna be difficult because I’m gonna have to tell people why I haven’t been employed for such a long time. I have thought about that. But I can only sort of just be upfront and say well look this is why I haven’t worked for 12 years because I suffered with a long term condition, but since I’ve been better and I’ve done this that and the other. I’ve done several courses, I’m you know doing my voluntary work. I’ve got no qualifications as such, but I’ve got hands-on experience and this is why I’ve got to keep up with my voluntary work, until I know that I’m well. At the minute I know I’m not well enough to go back to work part time, but I’ve gotta be doing something. So it looks good for me, when I do decide to go back to work, probably next year now. Part time maybe to start off with, and then just build it up from there. Again I’m lucky that I’m still young enough to start again. I’m not over the hill yet [laughs].

No absolutely.

Not yet. I’m doing a course, at the end of this month on mental health. So I’m just sort of getting all the free education in where I can, ‘cos there’s plenty of adult education centres and things now. And the work that I want to do anyway, a lot of the times you do get training with it. Because care work is not something that everybody wants. You’ve gotta be a special person to do it I think. You’ve gotta be dedicated to do it, and I am. I’ve got, I think one of my gifts is I’m good with people. You know, again through the years of having epilepsy when I have done work it’s been with disabled children, it’s been in care homes, it’s voluntary work I did for about a year with adults with learning difficulties. So I’m looking to go into the care sort of work, that’s what I definitely want to do.

It’s just a constant fight, and hen you’ve also got the benefit side to it. If you’re not at work it’s a game of two halves whether you get accepted for certain benefits and it’s just so frustrating about which one do I go for you sort of go along to the job centre and say, ‘Hey I’m unemployed’, or you could go on job-seekers, or have you got any medical problem, you could go on incapacity benefit, then they turn round and go, ‘Well, you look normal, you can walk around so you’re fine. And it’s like, ‘Well the problem isn’t in my physical appearance, or my physical capability, it’s in my brain. And with that, blooming disability living allowance, now that’s a completely different story, that’s just you’re picked at random for that I swear, it’s absolutely ridiculous. It is very hard to be employment and benefits, it’s constantly a battle. I mean looking to try and maintain the job to getting people yet again to understand what sort of thing. I mean if you’re sitting in an interview and you turn round to someone and say, ‘I have seizures, I also have absences where I hallucinate, will you please employ me?’ They’re gonna, they run a mile, which is understandable, ‘cos anyone who doesn’t understand what it is, that’s quite terrifying to someone. Especially if they’re classed as being responsible for you, they don’t want to know due to this suing culture that we’ve got.

Can you tell me more about the benefits-side, you said that’s difficult issue as well?

Yes, I mean not so much the job seekers’, I mean ‘cos everyone’s entitled to once out of work, but it’s more the disabled one. You always get that question on whatever form you may be filling in, whether it’s for I don’t know for some sort of ticket for a concert or something, ‘Are you disabled?’ I never know what to put down because it’s sort of, ‘Am I?’, it seems to be that you’re disabled when convenient really, when it comes sort of like in certain jobs you’re classed as disabled like you’re not able to drive, therefore you’re disabled. But when it comes to disability allowance well you’re able to walk and go around in a normal way, so you’re not disabled, so it’s sort of when convenient for them really. And I’ve personally applied for a disability living allowance twice. I’m currently applying for it now, and I applied for it when I was a lot younger as well, when I was about 16 or something. When I had actually found out about it to begin with, you have to ask about it cos there is no given information about it. I got turned down due to not being, not being diagnosed so.

I mean it’s just ridiculous that benefit, there is no proper, how can I put it, there seems to be no set goals that you have meet to get it. And if you do meet them but certainly not, I mean, the problem with being epileptic, you’re not so black and white as, ‘Do you have problems in the bath when you’re having a wash?’, ‘Yes I would have problems if I was having a seizure. But maybe tomorrow I might not, but maybe the next day I might. I mean it’s not so easy to answer the questions and to tell people that sort of information cos you just don’t know. And there’s no area for us to slot into, we can’t fit into anything.