Whilst many of the people we talked to had been retired for many years, some were still working full or part-time. Here people discuss the effect of osteoporosis on work and finances. Some people said that they found it difficult to work full-time because of their osteoporosis and had either retired, were thinking of doing so or had decided to work part-time.
Several people had to give up work after diagnosis and/or because their condition had got worse. Pat and Rose were on sick leave for a long time following their spinal fractures and when Rose returned part-time to her work, she did a different job with less responsibility to the one she had left. Pat was asked by her employer to take early retirement because as a nurse she could no longer do her job. Retiring because of illness at a relatively early age can be hard, particularly for men.
Married, two daughters; early retirement due to osteoporosis. Works as a volunteer for the National Osteoporosis Society. He thinks it is important to raise awareness about osteoporosis in men.
I mean my job in a way was a quite high status job because I was a sales director which was given my background was an achievement to get to that position. You know I sort of had to work twice as hard as everybody else. I didn’t go to university so you know. But I reached the dizzy heights and I’d been doing the job for about two and a half years when this happened. So I was, I was really on the top of my game if you like. I was in, you know, I was in the best job that I could have been in working for a company that adored me and I adored them. My future was tied up really. I was going to be the next MD. I was going to be on the board. Everything was going my way and then bang, this happened.
All of a sudden you go from hero to zero overnight. And the status side of it is that I. Don’t matter what job you do I think I don’t think it’s important I think with a man, I think whatever job a man does he’s proud of. If he’s a mechanic he’s going to be the best mechanic and he’s going to, he’s going to miss it which. I don’t think it was necessarily what I did. I think if it’d been any job I think I’d have missed the camaraderie. There’s a lot goes with the job. It’s not just the salary it’s your friendships. It’s your, it’s your way of going out of the house every day justifiably going out every day having your own space and then doing something completely different and then coming back to your family. That’s the big thing. You miss that sort of. It’s like if you have a hobby it will never be the same as a job. You’ll always find time to put your hobby off. Because if I say to [wife] now, I’m going to make a model aeroplane tomorrow and then [wife] wants to go shopping I bet shopping will win over the model aeroplane whereas if I was saying I’m going to work tomorrow then [wife] wouldn’t have any side of it. You know I’ve got to go to work for this family. And [wife] can’t argue. So your wife can’t. You know. So that’s what your job is, it’s a release to. I think it’s. I think we underestimate what our careers or our jobs are really. I don’t think they’re just a thing about salary. I think people go to work, it’s their release, their escape really. And I think that, you know.
And everybody, whatever job you do people would agree that it’s a social tool as well. And you know, to lose that at a young age it’s…. I mean you hear of people who retire who can’t handle retirement because all of a sudden they find all this time on their hands. Well I was like that but it was twice as frustrating because I was too ill to actually do anything so I was actually too ill to go and have a round of golf which I used to love doing. I was too ill to pursue any of my real hobbies so you’re left with sort of, basically what can you do, you know. You do the crossword in the paper in the morning and that’s your mental stimulation for the week. You know it’s gone. And, and I found that really difficult. And the status of putting a shirt and tie on, putting your suit on to go to work. You know being part of something. Being, working on a project that everybody’s, you know, bringing home in the evening, even if it’s stressful you thrive on the stress. All of a sudden that stress is taken away. Your brain is, becomes, you know, redundant almost. You know you’re…
My world just became small. I think that’s the best way to describe it is that I had nothing to talk about. I had, you know, no outside life because, you hare nothing. I mean I’ve got little hobbies now. I enjoy my garden now. I enjoy my tropical fish. They’re my little diversions but I couldn’t talk to y
Although several people said that osteoporosis was having a detrimental effect on their working life, work also kept them active and gave them a sense of achievement. Laurence does manual work and in the last few months he has started to get more pain than before after doing some heavy work. Although he enjoys his work, he is thinking of working part-time or retiring in a few years time.
Emma has reduced the number of hours she does every day but still continues to work five days a week because she wants to keep active. Originally she planned to keep working until the age of sixty-three but now it will very much depend on her health. Jane took a longer journey to work to avoid using public transport that also ensured her a parking place so she could reduce the need to carry things for long periods of time.
Laurence works in a dairy farm, is married with two adult children. His mother had osteoporosis and his brother has the condition. He was thinking about early retirement or part-time work.
Well that’s it’s I’ve not stopped altogether so my boss says to me, ‘Let me know what you can’t do and what you can do so we know.’ What it is. Like as I said I told her, ‘I can do most things. I can, you know, I can I, you know, do most things basically.’ But not at a rate of knots that I could when I started there partly because of me age I went in to the [work place] when I was fifty five, I wish I’d started on the farm when I was twenty five really. You know, partly because of my age because I’m sixty two now and partly because of me back, back.
I get a pension from the [former workplace] right and I get a wage. Basically, I’m earning what I was when I left when I worked at the [former workplace] like that. The salary I’ve got now and I, you know, I don’t go, we don’t go drinking and what have you blah blah blah but by the end of that month I basically breaking even or just in the red right. So if you want any, you know, if any extra and that all [wife] s money goes into the savings account I just draw out some of that her money to put in, the current account to tide us over blah blah blah which I mean I don’t like doing really because it’s hers but she said, ‘It’s what it’s there for.’ So in a way, you know, if I did go on part time I don’t know I suppose I’d have to manage.
So are you planning to retire in 2010?Or kind of?
I’d like to carry on. I’d like to do part time. Sometimes I wish I could retire, I suppose but then I like working and then you know, enjoy it basically.
A few people had decided to work part time or were thinking about early retirement because they wanted the time to do things they enjoyed while they were still fit and able, in case their osteoporosis deteriorated and affected what they could do in the future.
Having more time in the week had enabled some people to manage their osteoporosis better, by having the time to do exercise.
Divorced; works as a legal secretary. She has always been very sporty but now her exercise routine is aimed at enabling her to maintain mobility and flexibility in old age.
Yes. Yeah. I work full time. But because I retire next year I suppose I'm lucky, we get 90 days pre retirement leave. So from June I will go onto four day week and then I will go onto a three day week. So I can sort of wind down. Start winding down this year. Which is good. Because not a lot of firms have that. So I'll be going more or less sort of part time.
You don’t know what is going to happen. I mean hopefully I won’t deteriorate too quickly, but you just don’t know. So you do what you can, you know, and hopefully I'll have a bit of retirement before I'm in a wheelchair [laughs].
Well it won’t be early retirement because I will be 60 next year. So I was, I was lucky that when they changed the State Pension to 65. Women, 44 and over kept their state pension at 60 and at the time I was 44, so that was the advantage of age there. I was 44 so I kept it at 60. So I keep my State Pension at 60 and I get my company pension. Whereas friends younger than me they have to go 61, 62, 63 and then eventually it will be 65, which I think is, it's quite old really. You know, it's not old in old terms nowadays because we're living to 80, 90. But when you are 80. 90, a lot of women are not mobile, can’t do a lot for themselves. Like my mother's like a classic case. So over the last three years with my mother, it has really brought home to me, that if I'm going to end up like that… because that was one thing I did say to my own GP [laughs]. I went to my own GP for something and I'd sort of got on to about my mother. And I said to her, “If I end up like my mother I will be taking myself off to Switzerland to be put down.” [laughs].
I don’t think I actually, no I don’t actually think I told them that I had osteoporosis. No. I haven’t actually told them I've got osteoporosis. Because I didn’t need to. There's nothing I need them to provide for. So I mean some of the, some of the women at work know I've got it, because I have told them, but it is not generally known. I haven’t told everybody "I've got osteoporosis". It's just as it has come out in conversation.
Okay. So it's not something that you feel you need to …?
No it's not. It's not. I don’t need any special needs. You know, you use the mouse, and you, you can get things to help that. I don’t think you can get things to help osteoporosis, and unless you can get a special chair. But I think it's just making sure you don’t sit down for too long. Just keep getting up.
I get up. Because I'm on the top floor I get up and go up and down the stairs and I can do that. You know, I can sort of leave the computer and go up and down the stairs and keep mobile. But you are sitting for a long time and I don’t think it helps.
Several people worked for their local councils and made the point that the public sector, like local government organisations and the NHS, were good employers. David, who has also had rheumatoid arthritis since he was a child, said that his employer, the city council, had been ‘fantastic’ in providing anything he needed to do his work. He is helped through a special initiative called ‘Access to Work’. Access to Work provides advice and practical support to disabled people and its employers to help with work related problems resulting from a disability.
Jenny who worked for Social Services for twenty years, said there was never any money for new equipment so she did not ask for any special equipment herself. Emma started having headaches that her doctor thought were work-related.
Widow, works full-time as an office administrator. Lives with her two adult children and has an active social life. She has noticed some improvement since started on Strontium ranelate.
And at work what happened, you changed your desk?
What happened is that we had, the management keeps changing the section. So and I have got a special desk for my, for myself, which I have got from my, since I had my broken ribs and everything. I’ve got my special chair and a special desk. So they had to move the desk. But before they moved the desk, I moved my place. And it took nearly two to three weeks for them to move the desk. While I was sitting on somebody else’s desk, my headaches started. I started really heavy headaches. And headaches were so severe, so severe that even the painkiller could not give me any sort of relief. And if you keep on taking the painkiller then next day you cannot even open your eyes. It becomes very drowsy after, the whole day my eyes are heavy and drowsy, I cannot even open my eyes. The lights affects and everything affects them.
So then I, now I have got my desk back and luckily when I moved my desk, the same day on Friday, last Friday, I was very good. I did not have any headaches. Since last Friday I haven’t got any headache yet. So now I’m, I need to find out what is the problem of this headache which I have, I had talked to my doctor. So my doctor thinks that it is a work-related as well.
Yeah, I need to have that assessment again. So I am going to have that assessment again.
My employer is going to do that. And usually we, I was told even the old are advised that as soon as we move the desk, we change our work and anything we must have that other assess, or work-related assessment done as soon as possible.
Gloria worked for the voluntary sector. She said that although Health and Safety is a big issue now people still did not realise how serious and fatal osteoporosis can be.
Married; worked as a shop manager but retired last year. She wrote to the Health Minister explaining that she had been waiting almost a year to have a DXA scan.
I don’t think people realise how serious osteoporosis is. You know, that because it contributes to killing people one of my volunteers had osteoporosis, a lovely, lovely lady and she was quite bent over and in the end she couldn’t breathe because she was so bent over her lungs weren’t working properly. And it really contributed very much so to her dying. And I just don’t think people realise how serious it is. It’s not just that your bones are thinning and deteriorating and you can end up with like a pain in your back or you can break something.
But it can cause other problems and I don’t think people are really aware.
So do you think that this affect the kind of support that someone with osteoporosis can get because of this lack ofunderstanding.
I do. Yes, I think, you know, particularly in the work place you know, health and safety is a big factor in the work place wherever you work now but if you’re employed by a company and you’ve got osteoporosis even if you tell them you’ve got osteoporosis, so you’ve got osteoporosis they make a note on your records but I don’t think they’d do anything to help you.
A few people did not see the need to tell their employers that they had osteoporosis because they did not require any special equipment and their ability to do their job was not affected by their condition. Marylin who does a desk job was able to take regular breaks and went up and down the stairs several times during her working day. But other women, like Sarah and Jenny, found it difficult to stop what they were doing and take a rest every twenty minutes. Side effects of medication can also make people feel irritable or tired which can affect working life
Keith works full-time as a statistician and he is also a concert pianist; single. He was aware of breast cancer in men but thought that osteoporosis affected women only.
I had noticed in myself, I was just trying hard not to get, to go, nearly, nearly always at work actually. I was finding I was getting, you know it’s quite easy to get wound up about things if you feel, you know to, you know to let them get you stressed you know, it was often quite trivial you know? And about having to force you know, trying to force myself not to, trying, trying not to get you wound up, certainly not to let it show. You know, ‘cos I wouldn’t want it to affect relationships, you know at work or anywhere else.
So for how long have you noticed this change?
I noticed after about, after about a month. I think three to four weeks.
After you started?
After I started it yeah. So I mean to begin with actually I felt better, testosterone, I actually felt I had a bit more, a bit more energy, you know and as I say I mean after a week or two my sex life improved as well. So actually I thought this is great you know, but as I say after about three to four weeks, that that you know you know I’m getting a bit irritable now, I do feel I’m getting a bit wound up about things.
Now it’s not totally conclusive because you know I did have a number of, I was actually quite pressured at work at the time, quite a lot of, you know I had quite a lot of work on, I had a conference coming up, so I wasn’t you know totally, I thought if I, it could be the medication and particularly as I know, knew that it was a possible side effect.
I say, I think I’ve been pretty good as keeping it under control, you know, if I do get irritated or feel under stress, not to let it show you know?
We are a very happy group at work I mean, it’s a very convivial sort of atmosphere, you know, and on the whole you know it’s the real commercial people which I’m with, I’m in market research, you know they all, the tend to be very, you know people very, very you know lively people, and mostly younger than me you know? And but on the whole it’s a very you know happy sociable sort of group. And you know the last thing I’d want to do is to sort of you know is to spoil that. So I think I’ve been quite careful not to let it let it affect, you know affect relationships with my internal clients.
Several people were working as volunteers for various organisations and said that voluntary work gave them a structure to their day, a chance to use their skills, social contacts and social status (see also Osteoporosis organisations and local support groups).
Joan is a widow with three adult children. She lived abroad and worked as a radio presenter and as a teacher. She does voluntary work and drives to the continent.
Yes I think I would say I do have a positive feeling. I cannot cure myself and nor can doctors. I know my limitations but there’s an awful lot of wonderful things that I do even when pain is there. But the positive attitude I think goes a long way to enjoying life. I still have a lot of things I want to do. I lot of things I still want to see. I may never do them all but dreams go a long way in helping.
And you do, do this voluntary work?
Yes I used to be, I just stopped doing it actually in some ways the Neighbourhood Watch coordinator for my whole area. But my main volunteer job I am the Tuesday volunteer in the office at the [name] hospice where my husband was. And I… One of my jobs my particular job at the moment I’m quite busy is looking after the collecting cans that you often see in bars and pubs and shops and this week I have been delivering them and picking up full cans ready for the money to be counted and then the paperwork that goes with that and that benefits a place that I feel is of great benefit to the community because unfortunately the NHS doesn’t cover all the costs. We still have to find a million pounds a year from volunteers and I’m one of the volunteers who will make sure it still survives [laugh].
So I suppose with all this volunteering work you meet other people and you are in touch with?
Oh yes. One of the pleasures of being a volunteer in, at the hospice is that I have made such good friends of many years now. And I really look forward to going each, one day a week or sometimes twice a week. They’re good friends. Yes they are close friends.
Chris has just completed her Master degree in Art and wasn’t been able to start work because she was due to have more surgery on her ankle.
Osteoporosis can have several cost implications. Several people purchased equipment for around the house, such as stair lifts, electric operated garage doors, extra handrails, special adapted kitchen utensils or built a walk-in-shower. Other people had to replace things they already had like an armchair, bed, mattress and sofa. A few bought an adapted, more comfortable car, or had to pay for taxis. Some people saw a private consultant and/or physiotherapist, joined a health club or regularly paid for complementary treatments and/or bought vitamin supplements.
Being elderly, living alone and having restricted mobility could also add to the cost as people paid for cleaning, gardening, having groceries delivered and in some cases buying special clothes. David paid for his wheelchair and although he is aware he can get funding for it he said it is quicker to get it himself. Susannah said that she has paid a lot of money for supplements and equipment to help with her osteoporosis (see for example Impact on home due to osteoporosis and Use of complementary therapies by people with osteoporosis).
Osteoporosis had affected some people financially. Those who retired early said that they had to be ‘careful’ with their incomes and savings. For instance, Susan couldn’t afford to see a private consultant because she has a small pension. Laurence, who is still working, was aware that early retirement will affect his monthly income because at present he has a pension and a salary. Chris thought that both her fracture and her divorce had an impact on her finances. Emma’s son and daughter live with her and help with the household expenses.
Divorced, two teenage sons; recently completed an MA in Arts, lawyer by profession. Chris says that her diagnosis enabled her to reassess her personal and professional life.
How many hours can you work and the type of work you can do?
Yes, I’ll have to take that into consideration. But I’m really the sort of person that I think if I want to do something, I’m going to go all out and do it irrespective. But not to the extreme extent that I’ll damage my body. But I am not going to let it restrict me to that extent. I’ll do what I want to do. Obviously I can’t lift heavy things. I won’t be silly enough to do that. But there are a lot of jobs out there that don’t require that. And I’ll just take care of myself. But I will do, I will not let this hold me back. I certainly won’t let it hold me back.
Has there been any financial implication because of your condition?
Well, I think there is considerable I mean for the marriage. I had a very good lifestyle. You know, we lived in a huge house in the country, massive house, really, you know, had a different lifestyle completely. But I would have been working by now if I hadn’t had this bad ankle. I’ve been holding off because I knew that I would have another operation in September time to get this metalwork out. And I had personal things like my mother dying and being very ill this last, from December to March. And I suppose I’d worked quite hard actually in my art course and my MA. And having had the accident, that drained me considerably physically. And then my mother dying. And now I’m quite happy having these few months before I start working. But it has held me back. I the, the injury, I probably had been working by now.
A few people said that they were in receipt of government benefits: Incapacity Benefit (now replaced by Employment and Support Allowance) and/or Disability Living Allowance (now replaced by Personal Independence Payment), which was given for other conditions and not osteoporosis. For a person to qualify for such benefits a form must be completed and a doctor usually has to examine the person to assess whether he/she can perform certain tasks.
Jane is a university lecturer and lives with her partner and their son. Both her maternal grand-mother and her mother have osteoporosis. Jane feels let down by the healthcare system.
And then realised that I’d have to eventually go back to work. And then decided on a long commuted way of going to work which meant that I didn’t have to use public transport. I’d drive to work and go to somewhere where I could park quite easily, and so I never had to carry bags. And so I ended up, you know, living in one city and working in another city so that I could actually in my head have a more physically able life. And so I still do that now. And I still have to minimise everything that I carry. And but obviously my little baby’s a lot older now so I don’t have to carry him around so much now.
But economically the osteoporosis made an impact in the fact that I got made redundant as soon as I had, as soon as I was pregnant. Just, you know, coincidentally. And then went straight from I think the statutory pregnancy straight onto I think sick, a sick payment. So I went straight off the job market and into the doldrums of, you know, not having any money really. Because in my mental head when I had, when I had my son, it was like, yeah I’ll take this length of time off and I’ll do and I can do that and so it all went a bit down the Swanee really. And because you, you live somebody or you’re married, then you’re not entitled to anything at all really. And so economically I couldn’t afford a physio now.
I got like, a DLA award, a minor award and the doctor came out. He was just, like he was the most horrific person. And he was so like, and I don’t know why, maybe because he’s used to seeing lots of people who are making it up or something, but he just said, “Oh so when, when was the last time you fractured then?” As if it was just like I when was the last time you sneezed. And so I started to cry when he asked me. And he went, “What are you crying for?” And it was just like, you know, you’ve just got no idea, have you? And then he told me that I hadn’t any muscle wastage whatsoever. And I knew that all my knees had gone and the lot. And so you just end up just thinking, “Oh God, this is just such a waste of time.”
Was this a medical examination?
Well he just looked at my knees. And he asked me to bend down. And he said, “Oh, I’ll, you know, we’ll let you know.” But, you know, mobility-wise I went from having full total mobility to absolutely no mobility and then got told that I was fine. And you know, my life used to be quite big and my life now is quite little, You know, I know how to, there’s a certain, I’ll only do certain bus routes, I know that I’ll work out of my home town in order so that I can park. I know that, and so lately it’s got so little. I can’t go to the shops, I’ll carry three things. So it’s quite, and so, and then someone sits and goes, “Yes, well, you know, there’s no, you’ve got no mobility problems.” It’s just like, “OK.”
Some people have had their needs for services and equipment assessed by Social Services and a written report was made about their personal needs. Those we talked to said that they are in receipt of Direct Payments (cash payments) instead of social care services. They preferred this arrangement because it allows them to make their own decision about who would provide their care. Joan and Sheila's husbands are their main carers.