Long term health conditions (young people)
Going to work
When looking for work people felt concerned about their chances of finding the right kind of work. For some, finding the right job had been a case of trial and error. Being able to cope with a job could be difficult for people with certain long-term conditions, as was knowing where to get help and advice if things didn't work out.
Those who live with a chronic (long-term) illness described how bouts of illness meant that they had missed out on training and work experience. They know employers should give them the same chances as others and they want to be independent, but some found they had to keep trying to achieve what they wanted.
Even though she had gaps on her CV she got a part-time job, felt a huge sense of achievement and...
Even though she had gaps on her CV she got a part-time job, felt a huge sense of achievement and...
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.
He has just left university and knows there are schemes aimed to help people in his position (he...
He has just left university and knows there are schemes aimed to help people in his position (he...
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.
Young people told us about both their good and bad experiences of what it was like to work and manage a long-term condition. Several of them had found good ways to overcome some of the difficulties they had at work whenever they felt ill or had to take time off.
Good experiences at work
Talks about her own experience and gives advice to young people with (CF) about how to go about...
Talks about her own experience and gives advice to young people with (CF) about how to go about...
I went to the Career's Advisor and, when I was about 14 and they were completely rubbish. They didn't even know what CF was. They couldn't advise me on any of the jobs that I needed. I actually rang the Cystic Fibrosis Trust Helpline in tears and, and said, 'Well what jobs can I do because the jobs I can't do there seems to be a big long list? And everybody's so keen to tell me what I can't do. What can I do?' And after that conversation on the helpline I did find it really helpful to sort of gain a bit more perspective and try to be a bit more positive because I think it's very easy for people to be so negative about things particularly if they don't understand them and to try put up barriers.
But I was eventually I, I decided what I wanted to do and you know tried to stick at that and go, go down the best career path that I could. I mean I had originally wanted to go into journalism but even then, even when I made that career choice I still hadn't completely thought it through, the long hours, the, the lack of pay, the fact that you'd be on call all the time. You'd have to travel maybe all over the world. You know would I be able to get insurance. Would my lungs be, you know, would I be healthy enough? And I do think it's really hard to, to try think, 'How will I be in ten years time?' Because nobody knows and to be able to try weigh that up is so hard especially when you're a teenager and you've got so many other things going on. And then you've got to add CF into that equation. You know so I, I just not, not guesswork things you know but I, I tried to do the best I could with the information I had at the time and make informed choices. But I did feel that I could have maybe gone and asked for more support and got more information, got more facts.
I mean the Internet now I think is great because when I was growing up it wasn't really. It was still sort of taking off and it wasn't very widespread. I certainly didn't have access to the Internet at home. And I think now it's great that so many people can have access to the Internet and to find out things. Get advice and go on forums and things.
Ok. What would be your advice to other young people regarding career choices?
Regarding career choices, I'd say at the risk of sounding boring maybe an office, ideally an office job would be best, nine to five. I mean obviously office jobs can be stressful but they tend to be more emotionally stressful than physically stressful and I think that physically we, we already have so much to contend with. We have so much treatment to do that you know, emotionally it would be better for people to do, you know, something that's maybe mentally challenging rather than the physical all the time.
That's not to say that I don't want to encourage anybody to maybe go out and be an athlete but they have to be realistic. You know, and things like teaching and doctors that, you know, there's no reason why people with, with CF can't go into those areas and go into a profession but they need to look at the long hours, if they'll be able to cope. In terms of university and then going into a high-powered job do they have that support network. What's they're health like. And you know what's their drive. Are, are they doing it for the love of the job or are they maybe just doing it for the salary. If they're just doing it for the salary then maybe it's the wrong career option because they need to be able to do something that they really love and that they can get out of bed every day for. Because having CF some days can be so tiring and such a struggle that you really need to enjoy what you do.
And I would advise anybody to go out and to seek as much advic
She studies full-time and works part-time and says that she's always up-front about CF with...
She studies full-time and works part-time and says that she's always up-front about CF with...
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].
Her boss used to have asthma so he understood when she was off sick with bronchitis. Does not...
Her boss used to have asthma so he understood when she was off sick with bronchitis. Does not...
At work when you were applying for jobs did you put in on the application form that you have asthma, moderate asthma?
If they ask, if there's a particular space that says have you got any conditions then I'd put it on but otherwise I wouldn't bother.
Do potential employers raise the issue with you or not?
No I mean my current boss he knows that I've got it and he's, he used to have it quite badly and he's still got it a bit now. So if I've, when I. Well I've only once been off work with bronchitis but he completely understands 'cause he's had the same problems.
I think it is, it tends to be asthmatics that get a lot of bronchitis actually 'cause I know I get it quite a lot and he's had it quite a bit. And a lot of people who are not asthmatic have never had it at all [laugh]. So but no it's not. No, he's quite understanding about it and I don't think it would. I think you need to tell potential employers but I don't think it would ever be an issue.
No.
Not in my line of work anyway. Maybe, maybe something a bit more active [laugh].
Bad experiences at work
She describes how in a previous job her colleagues had been unsupportive and had made unhelpful...
She describes how in a previous job her colleagues had been unsupportive and had made unhelpful...
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.
She fainted once at her work (she has epilepsy) and had to go home and her colleagues accused her...
She fainted once at her work (she has epilepsy) and had to go home and her colleagues accused her...
I was out of school. I had it at work. And that was, I had, when I was working for a clothes shop in town, I won't name the name because they're evil bastards, I fainted at work once and, I felt really jittery. And I was really, I started to panic that I might have a fit. So I said to my boss, I was like, 'I really think I should just go home'. And he was like, 'Well, go and lie out, go and lie in the stockroom and see if you feel better'. And so I did. And I didn't feel any better. And I didn't want to phone my mum and dad because they were both at work, and I knew that my friend was at home. So I said, 'I'm going to phone my friend to come and pick me up, because I need to go home, I need to go to bed. You know, I don't feel, I just don't feel right'. And I remember at work, all my work, well, not all of them, about three of my work colleagues said that I was skiving and that I was using my epilepsy as an excuse. And I went back to work the next day and my manager said if I ever did that again that he would fire me. And I looked at him and I was like, 'What? What, what do you mean?' He was like, 'Oh, I know that you just went off with your friend that day and you just went, you know, you just wanted to get out of being at work'. And I looked at him and I was like, 'You've been aware from the moment I started this job that I had epilepsy. I explained what my condition was to you. And I, you know, you saw me collapse at work. Like how...?' I was like, 'How can you say that?' And I looked at him and I was like, 'Well, if you do fire me, you'll be getting a letter from a lawyer because that's actually discrimination'. And he shut his mouth at that point. And I left that job quite shortly afterwards because I, like a lot of my work, like a few of the people I worked with were just like really, I just felt, I was so angry. I just couldn't believe that they'd, I was like, 'How, what, do you think I'm that much of an arse that I'd use something like that as an excuse to get out of a day out of work? I mean, come on, really. Like that's a bit pathetic'.
Making career choices
Several young people said they worried that they might not get promotion at work or be given more responsibility because of their sickness record. Inevitably some had taken time off work to go to hospital for treatments or check-ups. Others said they had days when they didn't feel well enough to leave home and make the journey to work.
It could take time to find the sort of organisation that was sympathetic to people with long-term conditions, but those who'd done so felt good about it.
She has scoliosis and says that what worked best for her was to look for flexible hours or jobs...
She has scoliosis and says that what worked best for her was to look for flexible hours or jobs...
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.
Some people had found ways of managing both the demands of the job and also having a bad day or days. One young woman with scoliosis, copies her work onto a memory stick if she feels she might be heading for a bad day, so that she has the option of doing some work from home.
Based on their own experiences, young people felt it was important to be realistic about what you can and can't do in the way of work, rather than setting your heart on the kind of job that would be impossible. One woman with cystic fibrosis said she realised that being a journalist or a detective would have been out of the question as she simply couldn't have coped with the long-hours and travel.
Having a long-term condition has prevented some young people that we talked to from taking up a particular career. Several had to make a compromise in their choice of work.
She wanted to train as a nurse but because of her epilepsy she was advised to specialise in...
She wanted to train as a nurse but because of her epilepsy she was advised to specialise in...
But when I was applying for jobs in the NHS, I went in for an interview to one of the wards and they were like, 'Oh, you sound perfect. Like, you know, it'll be great. Like you're obviously really enthusiastic. And you want to do nursing, so it's quite good, you know, it's a good way to do it' and all of this sort of stuff. And, and then you had to fill out an Occupational Health form and obviously you have to tell, you have to disclose any disabilities or whatever that you have. And I put down that I had epilepsy. And that put a massive spanner in the works. And it took them over, I think it was six, six months to give me an answer of whether I could work there or not. And eventually they came back saying I couldn't work there because I was too much of a risk, that I might drop a patient if I had a fit. Although I did explain to them that the epilepsy that I have only like affects me, well, not only, but I've only ever had fits in my waking hours. And my doctor said that that was the sort of epilepsy that I had. And so I, it really confused me. I was like, 'I don't really understand why, why you won't let me work here like'. It was, the six months that it took was, that was really hard, because I really felt at that point that I was going to be held back by this and that I wouldn't be able to go into nursing because of it. And that was quite, that was quite distressing.
And I remember reading somewhere in the Disability Act, because when this was all happening I was like, 'They can't not give me a job because of my epilepsy. That's discrimination. Surely that's like against the law'. But the, I think the Disability Act was brought in 88, was it? I can't remember now. But I remember I looked into it because I was, it was really frustrating because I wasn't working at the time and I wanted to be working. But I wanted to do something that was going to be relevant to what I wanted to do with my life. And they, the occupational therapist said, you know, you know, 'We, we can make reasonable adjustments'. I think that's what they have to do. They have to make reasonable adjustments so you can work in a post. And they said that working on that ward would, would be dangerous. So she said there was an opening in the operating theatres for a healthcare assistant and that that might be better for me, 'Because you wouldn't be handling patients'. So I thought, 'Okay. Well, so how do I go about applying for this?' And she gave me all the information, I filled out the form, went for an interview. And I was at that point I was pretty sure that I wouldn't get it because of my epilepsy again. I thought they'd come up with another reason, saying that I might have a fit and, you know, fall on the operating table, you know, kill the patient or something. But I went to the interview and spoke, you know, had, you know, the two nurses that interviewed me were lovely and they were really nice. And I said, you know, that I'd had this sort of trouble in applying for the other post, on the ward. And they were, they were really nice, they were really nice and they were like, 'Well, that sounds very odd'. And most people that I spoke to thought that it was quite strange that their, you know, their reason for not giving me the job was because of my epilepsy. And anyway I got the job in the operating theatres and worked there for about two, about a year and a half, two years, and really enjoyed that.
And that sort of in my mind was like, 'Right, yes, I definitely want to go into nursing. Like possibly go to sort of being a theatre nurse'. But I thought, 'I'll do the general training'. And then applying for that I was like, 'Oh, are they going to tell me here again that I'm not going to be able to do it because I might drop a patient again?' And a friend of mine who was a nurse, I spoke to her about it. And it was like, you know, '“What, what do you think? Do you think it’s worth me applying for it? Or do you think I should just go into theatre nursing?” Because I sort of, because I got the job in theatres I was pretty sure that they’d let me work in theatres as a, as a scrub nurse. And, she was like, “Oh, I’ve worked with nurses with epilepsy and diabetes and, you know, all sorts of things”. So I was like, “Okay. Right. I’ll give it a go then”. And so I applied to do, to do nursing and went for my interviews and stuff. And, you know, filled out the form, said that I had epilepsy. Didn’t, there didn’t seem to be any problems with it at that point like, other than I had to fill out an extra form for accommodation.
Several young people we talked to had seen a careers advisor, used the internet to find out more about the company and its policies about disability, found out about their rights and benefit entitlements, and had contacted relevant charities for advice.
One young woman with cystic fibrosis said that it was depressing to be told about all the jobs she couldn't do - she wanted was information about those she could do.
What should you say about your medication and condition when you apply for work?
Different views were expressed about the need to tell employers about your medical condition. Many said that employers cannot discriminate on the basis of a health condition; they are bound by law to give equality of opportunity and consider all applications with the right qualifications and experience.
She discloses her epilepsy but adds 'controlled by medication' or 'one or two seizures a year' on...
She discloses her epilepsy but adds 'controlled by medication' or 'one or two seizures a year' on...
In my experience the employers have been very very good. I think certainly that is a worry for young people. 'Am I going to be able to get a job because of my epilepsy?' And there are a few jobs that people with epilepsy can't do. But it's a very few jobs. It's things like being a pilot or being an ambulance driver for example, or being a lorry driver. It's, there are very very few jobs that people can't do. I think people worry that, 'If I put epilepsy down on the form, am I going to be prejudiced against? Is the employer going to look at me differently?' And legally they shouldn't do that. They shouldn't be able to discriminate against people because of their epilepsy. What I would tend to do on an application form is tick the box to say, 'Yes, I do have a condition' or, 'Yes, I do have epilepsy' but then just to write by the side, 'Controlled by medication'. So you're telling the truth but you're also giving them a bit more information. So, 'Controlled by medication' or, 'One or two seizures a year'. So they've got the information there. They know how it's going to affect your job, if indeed it is. You know, maybe that it's not going to affect your working life. For example some people just have seizures in their sleep. So it's not going to affect the time spent at work. So I would put a little bit more information on the application form. But I would certainly admit that I did have it.
Sometimes she doesn't tell employers that she has sickle cell as she's found that they don't...
Sometimes she doesn't tell employers that she has sickle cell as she's found that they don't...
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.
Giving up work because of illness
Several young people said they had to give up work because their condition had got worse. For example one young woman found her drugs no longer controlled her pain. Another young woman with sickle cell went through a period of being frequently ill and was having to take time off work in order to prevent having a crisis and ending up in hospital. Both these young people thought that they were letting their employers down, and they felt very bad about it. Several of those who had given up work because of illness said that they missed the money. Many explained how much they disliked having to depend on benefits and/or their parents.
She describes what it was like having to give up the well paid job she loved and rely on benefits.
She describes what it was like having to give up the well paid job she loved and rely on benefits.
Last reviewed July 2017.
Last updated February 2012.
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