And that was when I decided that I wanted to get a part-time job as well. I just have a Saturday job in a library. And like again it was like a massive step for me because I was so nervous about sending a CV to anybody because my CV has nothing on it. You know I don’t have any work experience and I have a big gap where I started uni and then stopped uni. And I just thought any employer’s going to look at that and, and not want to know. And I felt very nervous about having to go to an interview and explain why there was those gaps as well. But in the end it was worth it because, you know, in the interview the people didn’t really seem to mind that much. They were more interested in what sort of skills I had in time management and what sort of skills I had with people. And of course those were things that I’d had to learn anyway [laugh]. So it in a way, you know, again that was like a positive thing because I was able to sort of say, ‘Well ok I don’t have office experience but this is the experiences that I do have. And so, you know, that became a positive thing then. And it made me stand out in the interview because it was different from some of the people that, you know, were going in there with the same certificates. And, you know, they’d all got the same things.

So yeah now I have a part-time job. That’s a Saturday job so that’s kind of really nice as well because I can earn my own money for the first time. And you know, that money is just mine and I’m not always borrowing from my mum because you know, that was what. Another restrictive thing is that you feel like at 23 or 24 years old you’re having to ask your mum for money. And I felt so bad about that because you know, I just thought no parent expects to have to be paying for their child when they’re that age. And it’s bad enough that I’m living at home with her still at that age but, you know, now at least I can have my own money and you know, do some of the things that I pay for myself.

I understand I mean I have only been looking for work recently, but I understand that you can get help at work as well through the scheme called Access to Work. And if you can’t drive you can get the money paid to get you to work and you can have a support worker at work and any modifications that are needed to the workplace can be done as well. Like if the table is too high you can get the money to get a new table or the company gets it, wherever you work for. I am not sure how it works but the money is there and you can get the help. So that obviously is great.

So I have applied for jobs but I didn’t have the experience needed, so obviously I didn’t meet the standard for the job. So that is fair enough. You know, I can’t moan about that. If I am not good enough for the job then you know, but there are rules now if you are good enough to do the job then you have to be given an interview. That is what I understand anyway. You know it is the law apparently now, and you know it is kind of the way it has gone up, I mean I am informed anyway that there are boxes that you can tick to say that you want, that you are disabled and that you can have a guaranteed interview, you know, provided you meet the standard for the job. Obviously if you are not good enough for the job then you can’t . Yes there are – these rules are only recent but ‘

And what about if you want to gain work experience and work as a volunteer? Would the same rules apply?

I don’t think so. I think work experience is different. I mean it is a lot easier to get work experience. You know obviously you have to – if you are in a wheel chair or you know, to find somewhere that is accessible is quite hard. I went to the BBC which is great, like accessible everywhere but you know there are places out that people do find it difficult to access because of the disability or whatever, but again you can get help. You can have a support worker at the work experience to help you. But to volunteer, I mean I have done voluntary work at the hospital and that but that is only because I have known them. You know but I think it is easier to get voluntary work then work experience as to a paid job as such.

And you want that, you want a paid job?

Yes. I want a paid job. As soon as possible. Yes. I would say you have got to be patient but I am quite hopeful that because I have got my qualifications I will get something.

Yeah, I think that is a thing when you do, even like new jobs and stuff, I’ve never held back about saying I’ve got CF. I know for some it is an issue because they are not as well, and they do feel discriminated against, but for me its never been an issue, I just say look, I do have CF, I might not be well, it hasn’t happened in this job, I’ve never been off for my CF, but as I said, if I am unwell there is a reason for it, I’ll get a Doctors note, anything that you need, but I’m making you aware, and also because their health and safety officer has to know. So.

Which job are you doing at the moment?

I work at the [name] Insurance inbound calls basically, peoples policies.

So you are doing a full time at university and you are working part time?

Yes.

How many days do you work?

I do 15 hours a week. I work all day on a Saturday, nine till five, and then I do three nights a week, and it is really hard, really hard, for the amount of studying I have to do, I don’t get much of a social life, but I used to work in a bar, as a bar manageress and at the time, I was having I.V.s at the time, the smoky atmosphere was horrendous, but I think I probably had a lining of smoke filled mucous on us which protected us in the end, but now if I go out, one night out and that smoke hits us, and its shocking.

Okay.

Not long before the ban [Laughs].

I had a job between the ages when I was 17 up to about 20. And it was very difficult in that workplace, because when I used to call in sick it was, ‘Oh, Elizabeth’s off sick again. My colleagues, they used to be sometimes not that understanding, and I didn’t have specialist seating there. And in the end it came to a situation where my doctor signed me off of work, and he said I wasn’t to return to work until I had specialist seating put in place. Because they wasn’t very long-term condition friendly. And there was one incident where I did go into work and I had to drop my sick certificates off. And my colleagues, they was like, ‘Well, if you’re off sick, how come you can walk and drop these certificates into work?’ But what they didn’t realise, they didn’t bother to ask, that I had a physiotherapy appointment which was one minute away from my workplace. So they never bothered to ask a few more questions. And it was quite difficult there though, it was really difficult.

And if I had, because it was working with the public and I used to have to sit down for very long periods, like up to an hour at a time. And I was dealing with customers and I couldn’t just stand up and, I know I couldn’t just stand up and walk away. But I don’t see what the harm is me standing up and saying to my customer, ‘Would you like me to get you a cup of tea?’ So it looks like I’m being helpful to them and yet I’m also getting a standing-up break. But they wasn’t very, they didn’t really take that idea very well. Because they thought, ‘No, if you’re with the customer, your total time’s devoted to them’ considering, not taking into consideration how much pain I was in. And probably my work was affected, because I just wanted to get the customers out as quickly as possible. Because I was in pain and I wanted to stand up and go and have a stretch.

I worked in part-time employment after that and it was a lot better, a lot lot better, with standing-up breaks. They was fine with that. And if I wanted to go out and have a walk, it wasn’t, it wasn’t an issue. I think because it was like, it was like local government, so the culture there was a lot better for helping people with long-term conditions.

Local government?

Yes.

What did they provide? In, in which way did they help you?

It was really my working arrangements. Because I did, I was, I originally did two, two days a week. And I had a bit of a flare-up, I had a really quite serious flare-up. I was off of work for two weeks. And when I came back to work they let me mess about with my hours. So sometimes I’d do, the two days a week, I’d spread it over four mornings a week, or I’d come in at 9 and go home at 2. I used to do however many hours I could manage that day, as long as it added up to my two days at the end of the week. And they was very very flexible. And if I, say I was booked to come in on a Tuesday, if I rang up and I couldn’t manage it, it was okay to come in on a Wednesday if I really needed to.

It’s really finding an employer that’s friendly to people with long-term conditions. Over the past I’ve found that local government are quite, are very very good. They’ve got lots of policies in place. The NHS as well are a fabulous employer to work for. Because they deal in health, so they understand about the problems of having a health condition. And also perhaps like do a bit, before you apply a job, do a bit of research into the company. Look on their website. Not necessarily their website as well. Look at what other websites have said about them too. Because I know when I applied for my job, I did a lot of research on the com-, because it’s the Expert Patients Programme, it’s part of the NHS, so I did a lot of research on the Expert Patients Programme website. And I looked at some other information on the Internet too. And I also in my job interview as well I explained about my condition. I was totally honest on my application form as well. Because I think that’s so important. Because how can your employer help you if they don’t know about your condition? And also perhaps someone who offers flexible working as well. It’s just so that you haven’t got a really bad sick record. Because that’s what I always worry about, having a really bad sick record. And it’s quite daunting when you’re going from education to work. Because if you take a day off sick at school or at college, it doesn’t really matter, it just goes down on your attendance record. But on when you’re actually being paid to do something, it’s a lot different if you take a day off, day off sick.

Sometimes I work from home. If my walking’s bad, I’ll ring up my boss. And she said, ‘That’s fine, to work from home. There’s no, no problem with that at all because our email, it’s a bit like Hotmail, so you can access some of it on the Internet. And I’ve got a memory stick and what I do is I always back up work on it before I go home that evening. So just in case I have an unexpected flare-up in the morning, I’ve always got work on the stick to do. They also, if my walking’s bad, they will pay for cabs as well if I’m going to a place that involves a lot of walking. And they’re very good like that as well.

Ok. What about your employer or your employers? What has your experience been?

I think when I first started work, I don’t think I mentioned I had sickle cell. Only because I don’t really get all that often because I look after myself. You know it was very rare that I’d have to go to hospital every couple of months or something. But if there was occasion that I wasn’t feeling well I wouldn’t have to call in sick that often. But I think there was a period where I was working somewhere and I was, it was just a period where I was getting quite ill and, and then I just left the job because I kept calling in sick all the time. But there weren’t, I don’t think they were ever unkind to me or anything. But it is hard because that just was a period where I was, just kept being ill. And you see, you know, I didn’t want to go into work and just make myself even worse and have to go to hospital. So that was quite hard.

Ok. When you fill in a form, application form do you put that you have sickle cell or not?

I think sometimes I do, sometimes I don’t [laugh].

Ok. And when they interview you do they ask you about it or?

I think I only put it on one. I think on the second job I had and because it. They had this like long. They had like a big form that you fill out and I think that I mentioned I had sickle cell. And then I was given a whole lecture about it and. Not in a bad way but she was like, ‘if you ever collapse at work. And I was like, ‘I’ve never collapsed before in my life’ [laugh]. So but I think on other application forms I don’t mention it because I’m not the kind of person to just collapse at work or just. You know I, I know like if I’m not feeling well then I’ll know that I’m maybe going to be ill. It doesn’t just come on like that. So I don’t really think there’s a reason for me to write it down.

So, yeah, I lost, from leaving my job, ‘cos I was there for two well I suppose, I worked for two years, I was there for three years and I progressed in my job. I started off as a county administrator, basically an office administrator, and I progressed and I was, I did organise all the competitions and tournaments for all the tennis players in the county, all the under eighteen tennis players, I oversee all competitive environments for all tennis in the county, all age groups. I attended, you know, I was, basically I, my salary reflected in two years, I sort of doubled my salary almost in the time that I was there. So it wasn’t like a little job that I just happened to fall into, it was something that I worked really hard at and even harder because it was me, not because it was me, but even because of what I went through in order to keep the job and going to work every day. But that’s, that’s, just a personal thing. But so, leaving it was hard. And of course it financially it had a huge effect, huge, I mean losing over twenty grand a year, when you lived in, you know, one of the most expensive places to live in the country. Just starting off after uni with huge, well not huge, but average debts that you accumulate while at uni, through student loans, especially when you wasn’t able to work through uni ‘cos you were too ill. So, you know, so it was huge implications with not being able to work. So I had no, I didn’t want to, I hate it, deplore it, but I have to, I have incapacity benefit now because it’s a necessity, I need ‘174 every two weeks, some of that I, you know, I rely on heavily. I don’t qualify disabled, because for some reason or another, something or another, because it’s non pelvic pain, or chronic pelvic pain, or lower back pain or the terminology, or something along it, means that I can’t be termed disabled for some reason or whatever. So I’m limited to what benefits I can claim. I can’t have, I can’t claim some of the other benefits because my partner earns more than what the minimum wage is needed for that. So I claim incapacity benefit, I think on long-term incapacity benefit at the moment, which you know, it’s a simple enough system to go through, it’s not simple, it’s quite difficult, but it’s simple in terms of it’s not intimidating or frightening or the forms are easy enough to fill in, the medicals are not intimidating, the people are quite nice and approachable and, you know, quite helpful really, you sort of think that they’re trying to prove that you’re not ill [laughs], sort of intimidated by the system, but you know. I think, it’s quite, you know, it’s been, not been too bad, not too bad. It’s just the fact that you have to do it that’s hard I think, being termed as incapacitated. So I don’t no. But yeah, ‘174 every two weeks is helpful.