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The impact of people’s health on their working lives varied considerably, depending on the type and severity of the condition, the effects of the treatment (if any), the type of employment they had and the attitude of their employers.
 
Some people were no longer able to work and, instead, claimed disability living allowance (DLA) or incapacity benefit (DLA has now been replaced by the Personal Independence Payment - PIP). Access to these benefits could be problematic and one woman described how degraded she felt filling in repetitive questions on the claim form. Others talked about how their self-esteem was affected by giving up work and the subsequent financial implications it had for their family life.
 

Gary describes how he “feels a burden” to his wife because he has had to give up work.

Gary describes how he “feels a burden” to his wife because he has had to give up work.

Age at interview: 53
Sex: Male
Age at diagnosis: 35
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But, you know, I can’t say that it isn’t difficult, because it is difficult. I hate being a burden and I feel that I am a burden because [name] has to do so much for me, and does it so selflessly that you know, I just, I hate it, I do, and I wish that I could do more to, you know, to be more of a partnership. I wish that I could, you know, I wish that I could work some more. But I, I’ve got a part time job, but it hasn’t really worked out. I’m about to go out to tribunal for… but then again it’s for disability discrimination. But I’m not sure that I can work. I’ve tried working just part time, although it was 30 hours a week, so it was quite a lot. But I want to do more. I want… maybe it was the wrong job. I don’t know. But I’m not going to give up. I want to, I want to do something.
 

Major surgery led Gareth to lose two jobs in his early twenties.

Major surgery led Gareth to lose two jobs in his early twenties.

Sex: Male
Age at diagnosis: 13
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And then over the years, more surgery, a sort of massive impact I suppose on my life, you know, lots of periods of, you know, I had two full time jobs at 17 and 18, I lost both of them within six months. One was for a solicitor even, and I lost both of them within six months because I wouldn’t sacrifice my personal life for work. So I worked hard, but then I played hard, and then I burnt the candle too brightly kind of thing at both ends. And so I lost those jobs.
 
I then didn’t work for a while. And then I did a bit of work here and there and yes, just kind of in and out of hospital, surgeries, more bits from my bowel removed. They did gastric feeding at points to rest my intestine. Problems with the back end, which can be a part of Crohn’s, and that had a massive impact, sort of, how I felt, my state of mind.
 
 

Marilyn decided to go back to work after Stewart’s illness and that has been quite hard for both...

Marilyn decided to go back to work after Stewart’s illness and that has been quite hard for both...

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Yes. He’s still not working because what it has done to his body... each time we see a doctor for whatever, I don’t think they understand that he was so ill that his body, as a layman, his body has never recovered. He… if we want to go out in the evening, he will have to go to bed in the afternoon. If we go out in the evening and he’s not had of hours sleep in the afternoon, we will have to come home 9 o’clock. And he has tried to go back to work. He’s driven for a couple of hours, and… his home, or, he, he just cannot do it. You can, it is a catch 22. If …
 
I don’t want to live through that again. I’ve changed my mind about euthanasia, I feel that if you’re that ill, it would have been wrong in Stewart’s case but its left so many things open that, it’s very hard to explain how you feel. You feel that you’ve been in a boxing ring with someone and they’ve beaten the hell out of you. You, you go on overdrive. If you work like I do, I have the support of my company, which was amazing. I didn’t have to worry, eight, nine weeks I sat by his bedside. So if people support you, that’s great. 
 
But the support came from places I didn’t expect it to come from. And people for the first couple of weeks are there to support you. After that they drift off. You know, you’ve got to get on with it. And then you have to make a decision.
 
And my decision was to be quite hard on you, wasn’t I? I went back to work. He had to get on with things at home. We’d lost an income. We’ve still got a mortgage. The insurance on that kicked us in the teeth. They didn’t pay out properly. We thought the mortgage would be paid for. But it isn’t. Because we had some savings we couldn’t get the benefit for people that are out of wait debt for Stewart. So, what’s happened now is the pressure has now come on me. I’ve taken the role as the provider but there are women out there and men that wouldn’t be able to do that. 
 
 
For some people, employment was largely unaffected by their condition. Employers allowed sufficient sick leave or they were determined to keep working despite some discomfort or illness at times. One man became a stand-up comedian after years of ill health and major surgery. He incorporated his experiences into his act for a while in his early career.
 

JP says his condition didn’t stop him being employed or the lifestyle he was leading.

JP says his condition didn’t stop him being employed or the lifestyle he was leading.

Age at interview: 45
Sex: Male
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You get on with it to be honest. It doesn’t make any difference. I don’t think... it didn’t stop me being employed, and the lifestyle I was leading at the time, I was partying hard, so you know, I was in no way invalided by going to the toilet ten times a day. And at the time I think it just shows how you are in life, you get on with what you get on with it, you don’t actually acknowledge that you have a great, you know, that you have a great difficulty. I mean yes, there’d be some days... there’d be some days when I’m sure, my functioning, the utility, the only way I could work was hampered by… I’d frequently go to the toilet six or eight times a day. I’d frequently have about twenty minutes feeling weak after I’ve been to the toilet. But it doesn’t actually stop you doing it.
 
Do you still consider yourself to have Crohn’s?
 
Well you do. You have to be careful with this language. Funnily enough I said I used to say, “I don’t have Crohn’s anymore” and when for instance, if it came to changing medical insurers, I wouldn’t do it. Because a new medical insurance would exclude me for Crohn’s, and that would be a risk that I couldn’t take, and every few years... I have a very stressful thing happened in November last year I got really upset about something and for about ten days, I thought I had it back. Well literally, nearly every time I went to the toilet, had the undigested food. So I don’t think you think you can ever fully say you don’t have Crohn’s, albeit there have been times when I’ve liked to think that. But I’m probably kidding myself. 
 

Sylvia was surprised that the stress at work didn’t affect her.

Sylvia was surprised that the stress at work didn’t affect her.

Age at interview: 74
Sex: Female
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Has it had much of an impact on your working life?
 
Only on two occasions, but apart from that no. No I mean, which is quite interesting because, you know, doing social work, mental health work, you can be in incredible, incredibly stressful situations, but probably because I wasn’t emotionally involved I was able to, I was able to deal with it. I mean, you know, some nights you had to be on call, which I must admit, I thoroughly enjoyed because the adrenaline gets going and you’re all out there. But you’re not emotionally involved. You’re able to stand back so no; I mean it didn’t have any major impact on my working life.
 
 
Some people continued to work but changed their working patterns because they felt unable to keep up with the combined demands of full time employment and managing their health. Others described how they had chosen an occupation to fit in with their condition or how their opportunities for advancement had been limited. This was often related to tiredness or having to take time off work for treatments or recuperation. For some people, the stress involved in their particular work could cause them ill health.
 

Harvey feels he didn’t make it on “a big scale” because he never had as much energy as other...

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Harvey feels he didn’t make it on “a big scale” because he never had as much energy as other...

Age at interview: 63
Sex: Male
Age at diagnosis: 56
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Anyway, so I’ll carry on. I went into teaching and I managed pretty well. I think one of the drawbacks with Crohn's Disease is you do get very tired and teaching is a high energy job, and I think one of the reasons why I didn’t really make it on a big scale, although I did quite well, was because I tired quite easily and never had quite as much energy as other teachers. 
 
And I think it was in my early thirties that I’d had some problems, which eventually the doctors found out was due to gall bladder stones and I had a gall bladder removed. And that was the first of a series of operations. After that I had intestinal problems with the Crohn's Disease. I had blockages, which again dogged my teaching career. And I had to have, I think, in the end at least three resections on my intestines. Little pieces cut out to alleviate these blockages, to stop them happening. 
 
Have you ever worked out whether there’s a particular affect that make the flare-ups happen or not?
 
Well stress can affect it, and probably [laughs] teaching is not the best job in the world to be in. I know there is one class I had which was just a very, very tough class, very hard work indeed, and towards the end of the year, the stress was getting quite strong and quite heavy, and my stomach was suffering, and indeed, I think before the end of term I did end up in the hospital. And I think that was one of the times when I had some treatment. 
 
Although, the first operation I ever had, was when I was teaching in [town name] so whether that was a stressful period or not I don’t know, but I remember, there were several occasions when I’ve been teaching when I’d been in pain and I’d have to go and sit in the men’s restroom and I would be unable to return to the classroom. And it would be covered by somebody else.
 
And I do remember in the last few years when I was teaching, there wasn’t a day when I wasn’t in some sort of pain. In fact, it got so much that I was actually used to going to school and teaching with the pain. I’d got myself into a state where I could deal with it and kind of ignore it in a way. But I was always kind of aware that the pain was there, but I was determined to carry on with the job. And I would still have been doing that if it hadn’t been for the fact that the cancer came along and put a stop to that. 
 
 

Hinda works part time because the mornings are spent dealing with her medication.

Hinda works part time because the mornings are spent dealing with her medication.

Age at interview: 54
Sex: Female
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And I find in the mornings, is the worst. I mean people say to me, “Why don’t you go and get a full time job?” I just work a couple of hours in the week. I couldn’t get a full time job, because, even if I wanted to I couldn’t. Because in the mornings, I mean I could be here till 11, 11.30 in the morning. When I get up I take the Questran and it takes me about two hours to get myself going, because I need the loo about three or four times, and then it settles down for the day. And that’s it. And then I take Questran in the evening again. Is there anything else you want to know?
 
Okay. Anything else we haven’t talked about? So just to summarise, you’re managing to work around it, because you work part time?
 
Yes. Yes. I only work like maybe one day, one and a half days a week.
 
Because of the condition?
 

Yes. Yes. I work. I try not to work till kind of early afternoon, like maybe from 12, 1 o’clock in the day, and I would only work definitely on a Thursday if there’s work there. And the odd time I would have to work possibly on a Wednesday for a few hours, but that’s it. I don’t do any more. I get very tired. I have, I have noticed that I do get very tired. I don’t know. Maybe it’s just getting… that I’m getting older [laughs]. 

 

Karen describes how tired she gets working as a barber in the city.

Karen describes how tired she gets working as a barber in the city.

Age at interview: 48
Sex: Female
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I just think I’m 49 this month. I’m a barber in the city. Do I want to be a barber at 59? And please God I live that long. You know, now I’m getting better and better, I do have to think that far ahead, and the answer is no. And to be honest I don’t think the guys will want me doing their hair, even though thankfully, I have a great clientele, very loyal, and there’s a lot to be said for experience. And I don’t go to work looking like an old lady. So, you know, but another ten years I don’t want to be doing it. I’m going to have to work, I’m a single mum; I can’t not work. So I’m sort of trying to think, what can I do that I can earn enough money to live, that isn’t going to be exhausting as standing cutting hair all day and getting the train to and from the city and I’m, I’m sort of in the throes of doing that now. It might not be for the next few years, you know, because I love my job, and I love the people I work with and I love my clients. You know, I, we laugh on and off all day. But I’m realistic and I think being realistic I won’t be doing it in ten years time, so I need to have something in place that I’m not going to have a big drop in my money, because I earn little now. I earn peanuts. You know, you only work a few days a week, it’s not en… and I can’t work any more. I just won’t be able to get up. I’m just so tired. 
 

Linda realises that she probably chose to be self-employed because it was “safer” in terms of...

Linda realises that she probably chose to be self-employed because it was “safer” in terms of...

Age at interview: 50
Sex: Female
Age at diagnosis: 15
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I think that subconsciously the choice of work that I’ve done, low key, administrative business stuff, and then when the opportunity to work for myself at home came up 23, 24 years ago, it, that I’m sure that was part of my decision to do it, that it’s safer somehow. Working for myself, the thought of being ill and having to take regular time off from an employer, you know, the diffi… yes, I have worked outside the home and I’ve had full time employment, you know, but I think that running my own business where I have control over when I work was definitely part of having Crohn's Disease.

 
While some employers were very good about people having sick leave, other people had less positive experiences.
 

Riva compares the UK to Israel where Crohn’s is recognised as a disability.

Riva compares the UK to Israel where Crohn’s is recognised as a disability.

Age at interview: 34
Sex: Female
Age at diagnosis: 16
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I tell you what, something that also, you know, they try and work here, the NACC, about recognising Crohn’s as a disability. Where I come from, Israel, when I was diagnosed with Crohn’s, there’s so much recognition of it there that immediately I was given 75% Disability Allowance, which is very high, because they know, you know, what it is to live with it and cope with it, and you know, try and work and keep a job and study and all that. It’s really hard, especially when you have flare-ups and you have to be in bed, you know, for days and days, and weeks sometimes. Here, there’s no recognition of Crohn’s you know, as, you know, as being a disability. And it makes a lot of people’s lives, very difficult. I mean I tried to get Disability Living Allowance, also with my back I am thinking, well my back just started, didn’t really know what it was yet, but I also had the Crohn’s, and things were really, really difficult. And I had a doctor came to my house and said, “Can you cut a carrot?” I said, “Yes, I can cut a carrot.” You know, “there’s days that I’m in bed and I can’t, but most days, yes, I’ll be able to cut a carrot.” “Then you don’t deserve anything.” I don’t think that’s a criteria to disability, whether or not you can cut a carrot. It was in these words. I mean I’m not changing anything he said. And I know there are lots of people whose Crohn’s are a lot worse than mine and they can’t keep a steady job, and they can’t go to university and study. And they need the support more than, you know, more than others. Even more than people in wheelchairs that can get out and about, and, and can keep jobs better than somebody that, you know, gets into bed for months at a time. And it’s not recognised here. And I don’t understand why.
 
The NACC are trying to change that?
 
Yes, I believe so. They try, they help, they try and help people, you know, fill the forms in a way, but I find these forms very upsetting, you know, at the best of times. After I didn’t manage to do it that first time, I sort of gave up. I said, “I’m not going through that again.” It was really, really hard.

Is it the length of the form?
 
Is not the length. It’s the questions they ask you, you know, and the repetition of the most, you know, degrading details. I don’t want to do it again.
 
 
Some people talked about other financial constraints such as health and holiday insurance. One man, for example, talked about how he couldn’t risk changing medical insurers because a new insurer could possibly exclude him because of his condition.
 

David is not able to book holidays in advance as he “is only as good as his next blood test”.

David is not able to book holidays in advance as he “is only as good as his next blood test”.

Age at interview: 66
Sex: Male
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And the problem is that we can’t really book anything in advance, this is the... we can’t travel, I can’t, as a result of, I can’t, we can’t get travel insurance. Not without paying a ridiculous amount of money. So we don’t book anything because I’m always only subject to, I’m only as good as my next blood test. So we’ve never been able to book any holiday at any length of notice. But we book short term, and we go away. We’ve been away, I think we’ve been to about seven or eight countries in the last three years but always at short notice. But it’s not a problem. For example, we went to South Africa in January, but I booked on December 31st and went on the 5th January, because I knew that my next appointment was late January, so I squeezed in three weeks holiday in South Africa, before the next appointment.


Last reviewed September 2015.
Last updated September 2015.

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