Unemployment and returning to work with chronic pain
We talked to people who were still in work or had returned to work since their pain started; those who were unable to work because of pain and people who had retired. We also talked to people who were studying or retraining (see also 'Coping with work and study').
Many people found it difficult to work because of pain. Having to stop work was described as a devastating blow, which not only incurred financial loss and loss of independence, but also loss of a career that people had worked hard for and loved. One man said it was not until he reached retirement age that he actually reconciled himself to this loss. Like many others he commented on the loss of a network of friends.
- Age at interview:
- Retired university teacher and author; married; 3 children.
I think the feelings about not working have gone on all the time and it's only since I reached retirement age I've stopped feeling guilty that I wasn't going to work. But certainly what predominated with me was always a sense of loss, tremendous sense of loss.
I was very busy at work. I probably was reaching the top of my career, I was hoping to apply for a Chair at the University, but I'd certainly got to a position in my profession where I was recognised as having made a good contribution and had quite a lot to offer. I was not only helping head of the core, social course, training social workers, professional social workers and probation officers, I was director of a research project working with families, testing out different ways of working with families, including family therapy and various traditional social work methods.
And I was about to write up that research. I'd made some films, they'd been well received. I was lecturing at [university] and [university] on post professional courses. And I think there was hardly a University I wasn't lecturing at some point on the work that I was doing. And all this was suddenly taken away from me. Although I'd been struggling for some time I'd still managed to keep things going.
But I'd worked, in spite of the difficulties, with no thought that the, these things will be taken away from me. It was just like working with some kind of handicap. But then, when they were taken away, it was suddenly, absolutely suddenly, and no prospect of getting back in because the diagnosis was slow, the treatment seemed non-existent and when the treatment did come it was, it didn't seem to me to have been effective.
I know I felt this tremendous anger that I had this taken away from me. I had this tremendous sense of loss. And I had this tremendous feeling of guilt that I wasn't going off to work each day. And not only the loss, lose the work but apart from two or three colleagues, who I'm still in touch with, I lost a whole range of relationships right throughout the country. And this was difficult to cope with.
And until a couple of years ago when I reached retirement age, this was extremely difficult to cope with. But now I'm reconciled to it because I've reached an age when it's legitimate to have retired.
Many people felt guilty about not working and suspected that they were labelled a 'shirker' or a fraud particularly if they claimed unemployment benefits (see also 'Financial effects and benefits'). Others, men in particular, felt guilty that their partner had to go out to work (See also 'Relationships and sex life').
How people finished work varied. Some, who had a sudden onset of pain or an injury, had not been able to return to work, particularly if their jobs were physical. A few had been on long-term sick leave and were eventually told by their employers that they were not fit for work. This could be frustrating because people felt that employers made no effort to accommodate them.
- Age at interview:
- Medically retired maintenance plumber; married; 2 children.
Well I.. well when I finished up work it would be year after the accident, about a year after the accident, I actually got called in to see the works doctor. In fact I had been to see him quite a few times. And again him and I just didn't seem to hit it off I don't know if it was because of me being short tempered and everything but I didn't seem to get on with him at all.
And then in the November, was it the November I can't mind whether it was the November or not, that the work sent me a letter to come in and see them and just see the works doctor they had a report from my own doctor and the doctors report from there work, they both said that I wouldn't be able to do that job again.
So I was paid off, and again that made me bitter because I actually worked hard for that firm, I actually went into the place, and I practically re-piped the factory I worked a lot of hours for them and I thought 'You've not gave me much of a chance to get back on my feet', one year and then I was out the door. And then from then I just didn't know what to do with myself, you're used to having '300, '400 wages and you go down to '72 a week.
I just didn't know how to get over it, I just worried about my mortgage, my house, I've had it all these years, I've only got 5 years to pay the house and things like that. All this added to the burden and it must do it to... I think it must do it to everybody because it destroys you inside, it destroys your independence.
Because you know that your wife has got to go out to work to keep you and I found that really hard to accept, I found that really tough. But still as I said I have a nice daughter and son who actually helped us through bad times, they were there all the time and if I needed anything they gave me it. They bought us a new TV, they bought us different things, my daughter always made sure that I had money in, I had to make a payment on my mortgage which was a great thing that she did for me. But I found that really soul destroying it really pulls you down because you think that you're useless, you're no good for anything, you can't do anything.
A few who felt forced out of work wished they had had the support of a Union and advised others to join.
Some people continued to work but found it a struggle. Some were offered alternative less physically demanding employment but decided it was not for them. A man said he went back too soon and found it hard when everybody tried to help him. Another could not bear the thought of not being the “king pin” and decided to use his redundancy money to open a shop.
A man who found going back to work difficult said that when he was offered a promotion it pushed him over the edge. Several people felt guilty about not performing to the best of their ability and felt that it was not fair on their employers or colleagues who had to “carry them”.
Some opted for redundancy or early retirement. A couple of women said they decided to stop work because their families were suffering and they valued time and health more than the money.
Getting back into work was thought to come with problems. Some found it hard to imagine that they would be able to work or were employable because the pain affected their concentration, made them tired and limited the time that they could do things for.
People in their 50's and 60's sometimes felt that it was late in life to retrain, although a few had learnt computing skills. Others had learnt to practice complementary therapies or considered pursuing work in an area which had previously been a hobby, for example photography.
- Age at interview:
- Retired agricultural worker; married; 4 children.
Well there, I joined a college last year to take my mind off things during the week when there's nobody here, when my wife's away working and things like that, I started at the college and I said to my wife, 'I'm joining the college, I'm meeting a lot of people and its passing the times of the day and I'm learning', and she said 'Right' and I let it go like that and I said, 'I think I'll buy a computer' and she was totally against it.
She says, 'You'll no sit at the computer five minutes, you haven't done anything like that for years, you haven't, you haven't, in the past couple of years, you haven't set your mind to anything in the past couple of years what makes you think you're going to sit at a computer?' I says, 'Well if I do not do something pal I'm going to go up the wall with pain if I don't' so she said, 'Look, we'll have it' and I bought my computer and I'm still going to college, I'm enjoying my college I just passed the first pass of my first two degrees this year, I got them through the Scottish qualifying authority in August.
I started a new program there I'm getting on with that. I'm never away from my computer at nights, I go up my shed and do the jobs that I want to do. I have another hobby, which is building model cars, which I build up, I maybe collect about four or five and then I'll spend every second night building them up bit by bit, and then I'll work on the computer a while, and I'll go back in the shed and we may go out for a drive, anything to keep me from thinking about this pain, because thinking about it, sitting here the way I am now, if I was to do this in the evening, I would be, I would need the doctor before I went to my bed, it's as simple as that.
Some found the employment services difficult to negotiate and unhelpful and were concerned about losing their benefits.
Despite these difficulties, several people had returned to both full and part time work. A woman who had started work as a part-time teaching assistant said it increased her pain but felt it was worth it just to get out of the house.
- Age at interview:
- Age at diagnosis:
- Part time teaching assitant (trained as programmer); married.
So I got, I suppose I got quite down because I wasn't doing anything. Which is why, with a lot of encouragement from my mum and my husband, I started a job as a teaching assistant, because I'd been doing a university degree when I first was diagnosed, or I first started getting the pain and after persevering for the second year, when I was taking my exams using a typewriter, because I couldn't do it handwriting by that point, it was just impossible, to not being able to do it at all, because I just couldn't take notes, it was hard for me to study for any period of time.
The drugs I was taking, the earlier drugs especially, were affecting my memory. So it was impossible to study, so I never finished my degree. So I didn't really know what to do from there 'cos I was sort of in between doing things anyway, so teaching assistant seemed like a good idea, because they think my condition is possibly genetic so, until they know, I don't wanna have children, because I know there are worse versions of my condition, so I don't wanna pass it on.
So, we're kind of thinking that we might adopt and, if we do, working with children is a great idea to, you know, to show that you know how to deal with children I suppose. So that's why I went for a teaching assistant job in an infant school and it has helped because I get very tired and very ratty and I usually sleep after I've worked for the morning. It gives you purpose, a reason to get into bed in the mornings, to carry on living and, although my drugs don't take away my pain at all, they do help me to live with it, because it's not the focus of your mind.
I mean I have five and six year olds pulling on my arms and it hurts, it hurts like hell, but I'm enjoying myself so it doesn't matter and I can, that's the difference with the drugs. Before I was taking these drugs, it would've mattered, everything mattered. You know, I'd walk around holding my arm, because nobody would, bang into it. But with these drugs I can cope with it as long as I'm doing things that I like doing.
Don't let it beat you. You have got to get on with your life otherwise it is not worth being alive. So find a job you can do even if it is only a few hours a week if it is only voluntary work or whatever anything is better than nothing. For all that I had great family and friends when I wasn't working it was depressing because I had nothing to talk about. Daytime telly, great, nobody else had seen it anyway because everyone else was at work, you become bored and boring if you don't do anything.
My job absolutely shatters me out it really does but you know the summer holiday we just had I hated the summer holiday, I was bored stupid I had nothing to do because there are so, I am limited in what I can do and there didn't seem anything to do. Whereas at least if I go to work I enjoy the company of the people at work I have got some good colleagues and I love the kids and it gives you a reason to get up in the morning and something to talk about afterwards so it is worth it.
Another who had been initially reticent about returning to work found out about the '52 week linking' rule which means that benefits are protected for the first year after a person with a disability starts work. A man who had taken early retirement because of pain returned to work as managing director of a company after going on a pain management programme.
- Age at interview:
- Pensions administrator; married; 2 children.
One of the things about going back to work was coming off benefits. I had been entitled to incapacity benefit and that was comforting in a way. Much as I didn't feel good about taking the benefit it was comforting that I had that regular income and, by going back to work, you were really loosing that security, you didn't have that childlike security blanket there, that knowledge that your income would still be coming, coming in. 'What if I take this job and it doesn't work out?'.
Well, I was in a fortunate position in that my benefit, and I don't know what the regulations are behind it, but my benefit was covered by a 52 week rule that, if I had to give up work for medical reasons within 52 weeks of starting the employment, I could get my benefit back at the same level I was on. Now, in a way, I had that security. Now I don't.
I've gone past that year and there could still be a flare up and there could still be problems but I've had to let that go. But it's quite a daunting thought to give that up. You are still sort of walking the plank slightly.
That's interesting, You were saying how you'd found out about the...
When I decided that I was going back to work, one of my husbands friends who worked for the Benefits Agency at that time advised me to write in and advise the agency that I was going back to work and to apply for what they called this 52 week rule, that if you had to give up work for medical reasons prior to the 52 weeks that your benefit could be reinstated to the level it was at before you went back to work.
I don't think it's one of these things that's you know, the knowledge which is, is freely available. I think certain citizen's rights groups would be able to advise people about it and, asking the benefits agency directly, they would probably be given advice about it, but I don't think it's one of these things that's kind of advertised.
- Age at interview:
- Group Managing Director (Returned to work after pain management); married; 3 children.
I mean I really was back to the situation where I couldn't walk very far; I couldn't sit for any length of time; I couldn't stand for any length of time; the only comfortable position was lying on the floor. And then I was invited to take part in a Chronic Pain Management course which I was quite sceptical about at first. It involved a lot of effort on my part going.
It was a twelve week course and starting very early every Monday morning, lasting a day each week and quite frankly the end result was quite miraculous. I suffer very little pain now, it comes and goes.
I took myself of painkillers completely, I still take non steroidal and anti-inflammatory drugs but they have little effect, side effect on me and a few other drugs associated with sort of the medication the... interventions that I had but none of those affect me.
I've now resumed a career, I 'm Group Managing Director of a large group of companies which I certainly could not have been without the Chronic Pain Management. It really was quite remarkable the results from it, it really only teaches you to manage the pain yourself together with some pretty stiff and difficult physiotherapy.
Now I living a reasonably normal life. I still have to get up and move about quite often but that's no embarrassment to anybody and I have to modify my driving skills and length of time that I am in the car I'm almost back to where I was in 90, 1990, quite incredible and I don't think I can say anymore than that about it.
Others had gone into voluntary work which they found extremely rewarding. A woman who helped at a local animal welfare centre said that it made her feel part of normal society.
Several people had been involved in pain-related charity work and found it satisfying to use their experiences to help others. Unlike paid employment, people said that they could always have a break if it got too much.
- Age at interview:
- Retired risk management/human resources, Voluntary work for Action on Pain; married; 2 children.
I tried to go back to work twice, I was determined, very determined that I would go back and I tried and I failed twice. The first time wasn't too bad, the second time was really demoralising and I thought I don't like this, I don't like being defeated, and once yeah, second time not good.
And I thought 'Well where do we go with this' and I decided that I would take the voluntary route with the support of the medics and my family, we decided that was the route to go because it was clear that my pain wouldn't go away and my orthopaedic issues would increase.
So, and it's proved to be a really good route because with voluntary work you can put it down when you're struggling and that's an important side and you feel a useful part of the community, you're doing something. The vast majority of my voluntary work is in chronic pain.
I think out of the frustration that I went through with my journey through and people I've spoken to at various points in my journey, decided to do something about it and formed an organisation called Action On Pain, which is now a national charity for people with chronic pain. And it's run almost entirely by people with chronic pain and health care professionals working in that field and it's been a tremendous journey.
Some viewed voluntary work as a stepping-stone back into paid employment where they could learn new skills.
- Age at interview:
- Senior trainer NHS Expert Patient Programme; single, living with long-term partner; 3 children.
How did you make that transition from being on benefits to getting back to work?
Yeah, I think for a lot of people with ... who are not working with pain, that is a frightening experience, but it doesn't have to be and I didn't know how much help there is out there for people with a physical problem or a pain problem in getting back to work and I was really, I was surprised how much there was.
When I decided to get back to work, I was, I suppose I was... what prepared me to get back to work was being active within the support group and I was, as I say, I was running these self-management programmes. So, yes I was still receiving benefit, but I was doing these self-management programmes on a voluntary basis so it was keeping mind active, I was learning skills, like IT skills, presentation skills and things like that.
We were lucky, the back pain organisation that I belong to, they applied for some funding from the government and they was given some money to develop the Think Back project, or Think Back self-management programme. So I actually went from, I come out of the system and actually went and worked for those for about a year and a bit.
Last reviewed May 2015.
Last updated November 2010.