Coping with work and study
We talked to several people who have continued to work or had returned to voluntary or paid work since their pain started. We also talked to people who were studying at university or college.
Work can give people a purpose in life, be a good distraction and give people self-esteem and much needed social contact. Whether or not people can continue in their jobs depends on the type of work they do. People in physically demanding or manual jobs were usually unable to continue, while people in more flexible office environments were often able to keep working.
Several commented that they could be good and efficient workers despite their pain, and that their attendance was often better than people who did not have pain. One woman commented that although people with pain are limited in some areas, they have often developed valuable problem solving skills.
People talked about things that made their work more manageable. Some opted to go part-time or take a less stressful job. Whilst this often meant a drop in income many felt that it was better to keep working in some capacity than to give up altogether.
- Age at interview:
- Age at diagnosis:
- Secretary; married.
I'm quite lucky really because I've got a rela', well I did have another job a few years ago which well I work with the Council so it's the same organisation but it was a higher grade and more money but I was just feeling so lousy I thought well I'll either have to change my job and do something else or give up work altogether. So this other job came up, it's a lower grade less money, but there's not really much in the way of hassle with it.
What keeps you working?
Well I think the main thing is I feel myself I'd probably get a bit, I've worked since I was, left college when I was 17. I've worked full-time all the years, never been out of work it's a way of life. I wouldn't know, I don't know anything else. There's that.
There's the thing I'm finding when at home all weekends or holidays because I've got things to catch up with and things that I do that I don't have the time to do during the week when I'm working, so that kind of fills my time. But I think if I wasn't to work at all. I'd probably get quite lethargic and probably end up lazing about not really doing very much because I'd have no motivation to do anything and of course the financial aspect as well.
As I've said, I've always worked. I've always had a wage or a salary coming in and I think that gives you your independence as well as anything else. But I think the main thing for me is, well I like, I like to have some kind of routine in my life and I think that, I think working, whether it be this job or maybe doing another job, if that sort of takes care of that aspect for myself.
Good communication with supportive employers and colleagues was crucial. Whilst some were cautious about talking about their pain at work, others felt it was important to educate, or as one woman put it “train up”, people so they knew how to help her.
- Age at interview:
- Care home manager; single.
How about your employers of the care home. How did they react to your problems that you've had?
Oh, they were very supportive. I am very fortunate. The organisation I work for is an extremely supportive organisation, I work shifts and obviously in the one house which I particularly like working in I couldn't so, work there anymore because physically I couldn't do nightshifts and that was required because of the high needs of the clients, so they transferred me to another house where, as I say, the clients had high needs in other areas in terms of living their everyday life but it was advice.
I physically didn't have to do anything very much which was just as well because at that stage I couldn't. The last few years I've got a managerial post and I really, I'm not employed as a support worker anymore but there are occasions when I have to when I don't have a staff but I can sustain the odd shift on duty but I can't go back on back to it so again, I think if that was too difficult and I was actually damaging myself I mean they are careful, I have had a bit of flare up at the moment, my line manager has asked if working was making that worse and if I said 'Yes', then they would no doubt look to offer me somewhere else. So I've found them very supportive.
How about your colleagues, the other people that you work with, have you found they have reacted to your pain?
Again, very supportive but I try not to make very much of it anyway. Some people, they know I have various problems, but I try and keep them to myself. Apart from that I manage the house it's not for the workers to have to carry me so they do though on occasions.
So I'm very fortunate again because I can order my own day providing I put in 37 hours per week, I can order that pretty much as I wish. So again that's probably an ideal world to be in and if I want to get up and move around I can.
If I feel too bad in the morning then I just stay at home and go in the afternoon. On occasions I have to, you know if I've got meetings or so on or something urgent to do. But apart from that I'm in a very lucky position.
Several people used pain management techniques in their work life including pacing, prioritising and doing the most important tasks when they were at their best and taking regular breaks to stretch and move around or use relaxation techniques (see also 'Pain management: pacing and goal setting' and 'Pain management: relaxation and distraction').
One woman said she made sure she always went out to get her lunch to get a bit of exercise although it was tempting to let others go for her. Some were able to organise their own day and even work at home if necessary - where it was felt to be much easier to manage their pain and meant they did not have to dress for work or travel.
- Age at interview:
- Fund-raising manager; married.
You talked about being in work and I was wondering how you cope with your pain on a daily basis in work?
Okay, I have an ice pack at the office and I have an ice pack at home, I have a heat pack at the office and a heat pack at home. I have painkillers, herbal painkillers everywhere you know in my handbag, at the office, everywhere. And people are understanding. I have an earpiece for my telephone I don't use the telephone without a headset.
And when I have pain sometimes I have to get on with something and I try and really push through which I shouldn't do. I should pace myself but I do get up a lot. I have a very high desk because I'm tall. I have got an adjustable desk. I have a back pillow which supports me in the chair. I've got a peddle rest to encourage me to sit properly without crossing my legs too much and I can move my legs and then get up and I make sure that every single day I go for a walk at lunch time.
It is very tempting when someone says 'Oh I'm going out to the sandwich shop, would you like something' and you say 'Yes, yes. Here's '2 will you get me something' But I have to make myself no matter what I'm doing. I know that at lunchtime I'm going to go out for a walk and go and get a sandwich and usually I just do a half hour walk and then come back and that helps.
And sometimes I'm just honest with my managers and say 'I can't cope anymore. I need to go home. I need to rest'. And they understand that if I don't go home and rest then the next day is going to be worse and when I come to work I'm going to be in more pain and less productive. So when I try, again it is listening to my body and I try to identify when the pain is getting too bad so I don't leave when it's at a peak, I leave before that.
And I'm very lucky I have a very understanding employers but, I, there is a lot of people out there who don't so.... I have got the right office furniture and I get up and move around. If I have got something to read and it's on the computer, I generally print it off and walk around the office or the store room or whatever and read it so that I'm moving and I'm standing up and I'm not stuck in front of my screen. It's just little things that I have to learn.
Some days I don't cope very well with it and I just ' Some days I let it go too far and I've got quite a long commute on the train and when I get on the train I just think I can't, I should be at home in bed right now I need to be sort of transported like in the sci-fi movie, or Harry Potter's dust, just transported home completely without having to make an effort.
So it's not always easy to cope with but I do cope with it most days. And sometimes I just have to take a day off, last week I did and I just said, I just said to them on the Wednesday 'I can't cope anymore and I think if I work any longer I am just going to do myself in completely' and I took the Thursday off and last minute leave is not always an issue whereas I think some companies it is.
But I just sort of said to them 'I need to take tomorrow off' and the next day I slept a lot and I walked, took the dog for a walk and by, you know by Friday I was feeling much better. So sometimes it's just about really listening to your body, if ever you want to take time out, you need to take time out.
Others had an arrangement where they could take annual leave at the last minute if they were having a bad day although this was not always satisfactory as it could eat into holidays.
A couple of people who had to travel for meetings had explained to their employers that they would be more productive if they travelled the night before. One also said that she e-mails or posts heavy documents so she does not have to carry them.
A woman who acted as the Disability Officer for her workplace pointed out that because of the Disability Discrimination Act employers are now legally obliged to accommodate people with disabilities.
- Age at interview:
- Civil servant; single.
The only thing I want to say about work really is how much of a difference it makes to me and the way that I deal with my own disability. That I am so heavily involved in disability policy and helping other people. That's not everybody's chosen way of dealing with their problem, but it works very well for me.
And although it might appear to some people to be immensely altruistic I'm also conscious of the fact that you don't do these things for other people if you don't derive pleasure from it. I certainly, and the fact that I've done that, that I've done this work for five years, has made me extremely knowledgeable about disability employment issues. And that's got to help, you know, that helps anybody's ability to deal with their own problems. They know what they're entitled to and they don't feel that asking for that is being demanding.
It's not, you know, the Disability Discrimination Act enjoins every employer to make reasonable adjustment for their disabled employees. And it's very important to realise that reasonable adjustment is not special treatment. Reasonable adjustment only brings you up to a level playing field with your colleagues and that a refusal to make reasonable adjustment equates to expecting people to work in a dark room with the lights off.
Having said that, with chronic pain conditions, and some other disabilities, I think very much, particularly in the chronic pain conditions. No adjustment can be made that actually puts me on a level playing field with my colleagues because I'm still in pain and because of still being in pain I have very limited stamina so that I am never going to be able to treat work in the same way that my colleagues do.
So as much reasonable adjustment as can be made, has been made, but I think that some people in senior management, well across the department, and across all employees think once you've made the reasonable adjustment that's it. And it is all they can do. There is nothing more that they can do but my life is never going to be the same as other people's.
Many people had adaptations made to their working environment including special seating and desks, foot rests, hand rests, sloped writing boards and telephone headsets.
Occupational health and safety advisers can also be called upon to help ensure that the workplace is safe. Employers sometimes took responsibility for this although others had an assessment set up through a Disability Employment Adviser (see also 'Unemployment and return to work').
- Age at interview:
- Pensions administrator; married; 2 children.
The office that I work in are actually very good at thinking about employee sort of health and safety issues etc... and you can request, which I did, a desk assessment to see whether your chair is adjusted properly, or you need a foot rest or anything, any other pieces of equipment. A couple of things were supplied, not particularly in relation to my back.
The chairs are adequate, in fact they're very good and I'm again very fortunate in that the job that I have I am not sitting for sort of the full 5 hours that I work each day. I'm sort of constantly at my desk, up to get something, back at my desk, up to see so and so, back at my desk.
So, the fact that I have that kind of just natural freedom to get up and move about, it's not something that I have to sort of excuse myself from my desk when I stretch my legs. Just, it's a natural break in the work that I have that allows me to keep jumping up and down like that. So it's not something that I need to explain to my colleagues 'I need to get up every now and again otherwise I become really stiff'. It's part of my job, so it goes unnoticed the fact that I'm doing this.
- Age at interview:
- Senior trainer NHS Expert Patient Programme; single, living with long-term partner; 3 children.
Now what help do I get? I got quite a bit. I contacted my local Disability Employment Advisor, which they, they're all connected to each Job Centre, I think it's now called the Department of Works and Pensions now actually, and I said to them 'Look, I'm going back to work, is there any help that you can give me?'
And I think if you do that within the first six weeks, there is tons of help and the help I got with, was with equipment and what they did was they sent someone along to assess me, what, what actual needs I want, I had to have. One was getting around travel wise, the other one was with the equipment, like office equipment.
So they bought me a chair, I had a specially designed desk, my height, all bits and bobs I needed to for me to work at a computer, it was brilliant and, what they said to me was that if within the first year this job don't suit you, or your condition worsens, you can come back into the benefits systems and you don't have to start off at the bottom of the ladder, you go back at where you finished.
And I thought, that's really good, that put my mind at ease 'cos I thought, you know what it's like, you're thinking 'Right, okay I'm well now' but the fear is 'But what happens if this job don't suit me' 'cos in most jobs you're expected to work, you know, thirty odd, thirty five hours, forty hours a week and you're thinking 'Well hang on a minute, I'm doing nothing and now I've got to go to thirty five hours' that can be too much and it's frightening, you know.
I always say to people, try and do a bit of voluntary work first so that it gives you, you know be a responsibility getting in and out the house and increase that say two or three days a week then, perhaps, do a part-time job, so you build up your confidence as you go along.
Not all people worked in a supportive environment. In particular people said that they had been overlooked for promotions; were asked to do things that they could not manage; were disbelieved and unsupported by both employers and colleagues or were viewed by an employer as a good way of upping statistics for employing people with disabilities without providing appropriate support.
Several people that we talked to had been studying when their pain first started. Some had managed to continue with their studies although often they had taken a break or changed courses. Universities and colleges were on the whole very accommodating and had provided special accommodation, computers and lap-tops, audio-recorders to tape lectures and photocopying services if people found text books too heavy to carry or hold.
There was often money available to support people through university including help with transport costs, although one woman said it had taken her a long time to find out about it. Prospective students with disabilities are recommended to contact their local education authority for advice.
- Age at interview:
- Research student; single.
It's all kind of a bit of struggle. They are not really geared up for it. I mean it's been the same with all of the help that I've needed with my disability, has been a matter of finding things out for myself, like I get Disabled Students Allowance which I didn't know existed until, I can't remember how I found out in the end but I was already like a third of the way through my Masters course before I knew it even existed.
And then I went and got assessed for it and it was like oh I can have all these things and they gave me a laptop so I could work from home and they gave me taxis in and out the University and stuff like that which made such a difference which was the main reason why I didn't quit my Masters course because I got all this extra help.
A woman who had realised that the transition from university to work would be difficult had secured special graduate training for people with disabilities. Whilst she would have liked to have worked freelance in a small company she was aware that larger companies were obliged to do more to accommodate her.
- Age at interview:
- Age at diagnosis:
- Press officer; single.
The process of securing work was a very long one for me, because I realised when I went into my final year, which I did over two years so I could study part-time, I realised at that point I would need to start planning to get the experience that I needed because I knew I was going to be at a disadvantage when I went to interviews, because I wouldn't necessarily have experienced all I needed to experience when I was at university because I was concentrating on managing my disability.
So I started to get more involved in things like the student newspaper, mentoring programmes and also to be very pro-active about being on the board of disability groups when I was at university. So my actual job hunting process began two years before I applied for my first job, 'cos I realised, having seen a lot of friends graduate, how important experience is going to be and how little I had.
So that was my initial planning and I then, once I got into the second half of my final year, started attending the careers workshops and media fairs particularly, because I'd decided that I wanted to go into the media, partly because I saw that it would be an opportunity to be freelance, which would fit in very well with the kind of life that I envisaged working for me.
So I attended all of these, becoming rapidly more delusioned, disillusioned, because I was told by many, many people that they couldn't physically employ a disabled person and, in this day and age, it's absolutely shocking to hear those words but I've heard them an awful lot.
Because when I was going to media fairs in particular, they were big events, I needed to be in my wheelchair in order to access them and a lot of media houses are very small, they're small companies, therefore the Disability Discrimination Act will apply to them in a slightly more flexible form and they basically said they couldn't afford to employ me.
That was a very hard thing to hear but, trying to be positive, I then decided the best thing that I could do is to get work experience with the BBC as a really large employer and also one that I knew to be proactive about disability.
So, through a mentoring programme that I was involved with at university, I applied to them, I did work experience for them whilst I was in my final year and I think it's probably a combination of that experience and the determination that I had that secured my final job.
A few people who were out of work had gone back to study part time. People who are registered disabled can often access free courses and training. A few were studying Open University courses which they could do at home sometimes through the Internet.
Last reviewed May 2015.