Feelings and thoughts about osteoporosis

Here people talk about the feelings and thoughts they have about osteoporosis and discuss their hopes and concerns for the future.
Feelings and thoughts about osteoporosis varied depending on how the condition affected their everyday life. People whose lives were not changed or only slightly changed, by osteoporosis said that it had not affected them too much emotionally. Others remarked that their initial reactions to their diagnosis had improved as they learnt more about the condition and its management. Positive thoughts and a pro-active attitude have helped others cope with physical problems.
Some people described feeling a range of emotions including:
  • denial
  • shock
  • anger
  • ‘lucky’ to have been diagnosed
  • depression, sadness
  • fear of falling and having a fracture
  • lack of confidence following a fall and fracture
  • loss of independence in old age
  • fear of disability
  • positive and confident
Many people said that osteoporosis had not affected them too much emotionally.
Several people who had been recently diagnosed felt ‘lucky’ to have had a diagnosis before developing serious osteoporosis-related health problems. Valerie was grateful that she was diagnosed before she had any major problems with it, like a serious fracture. Marylin thought that being diagnosed at a younger age gave her a better chance to avoid the deterioration of bone health that her mother experienced.
Initially a few felt shocked and depressed when given their diagnosis. Carol had been convinced that she was in good health and was shocked to learn she had osteoporosis. Other recently diagnosed people were still dealing with their emotions.

Carol felt very depressed and fearful for the first three months after she was diagnosed.

Age at interview 71

Gender Female

Age at diagnosis 70

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Well when I was diagnosed with osteoporosis, I’d already been on the medication for six months. So yeah I got used to the medication. But I obviously thought that it was going to come to an end because I was convinced that I didn’t have osteoporosis.

When my doctor told me I had, I was totally devastated. I honestly thought my life had come to end because what little I knew about osteoporosis. It just meant lots of broken bones, wheelchair, not being independent, having to be looked after. Maybe ending up in a home.

Not being able to do all the things I’d taken for granted. Like leaping into a car and driving. Walking. Running. Yeah lift, lifting heavy things. I thought I’m not going to be able do this anymore.

And I thought that the fact that I’d broken those two bones so easily, I thought my whole body was so fragile that the slightest knock, not necessarily a fall. I thought the slightest knock or overexertion would break a bone in my back. Or if I bumped into something I’d break a bone in my body.

And I was just terrified. I was terrified. I was very depressed. And I was in tears most of the time. I was desperately, desperately depressed. And this went on I would say for about three months, because I really couldn’t see that I was going to have any quality of life.

Whereas when you are fit you take it all for granted. When this comes it has a hard knock effect. And I just felt that my life was really finished. So this probably went on for three months.

Fortunately with the support and the tremendous support and the information that was accessible, and I was able to read about it, I eventually came to terms with it. And I started then to focus not on osteoporosis only, but I was then able to focus on what I could do about my quality of life.

And that is when I decided that yeah the exercise I have to obviously do exercise everyday. And this is how I came to get involved in the tai chi and Chi Kung. Yeah.

I think because I was able to focus on positive things for this condition, rather than think well this is what I’ve got and just let it take it course. I was able to come to terms with it, more easily.

But I’ll never forget the fear and the depression that I felt at that time. And the fear and depression it’s within you. Other people don’t realise how you feel. And you feel totally isolated at times with your fear.

But I must admit now it’s just over a year since I was diagnosed, and one a daily basis I can almost forget it. I do my exercise. And my, my diet is different.

But I can get on with my life. And my life style has not really changed.

I think what happened at the time it changed in here. And I had to I had to get it sorted out in here before I could sort my body out.

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Iris doesnt want her condition to affect what she wants to do in her retirement so she admits…

Age at interview 60

Gender Female

Age at diagnosis 59

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What are your feelings about the future?

I’m in denial. Absolutely. Like I explained to you. This because I was the oldest of six children, I had to help my Mum with all the children. And, then I had twin girls of my own. And my husband had been married before. It has always been tricky, very, you know, money wise and everything else, and so he has been retired ten years, but I had to work to finish paying for the house and everything else. And I just feel that I have fulfilled all my responsibilities now. I have done everything for everybody, you know, and I bought the house. That is paid for. I am mortgage free. That is it. And this is my time. Absolutely my time. So its I do what I what I want to do, you know, whether I want to, it is like I said to you about taking my grandson out. You know, and like the parents go out, and we found, it was on Teletext the other day we found a cruise of the Norwegian Fjords for £379 each. That was the Friday. It was to go on the Tuesday. So we went. And that, probably because my friend is 60 and she lost her husband last year, do you know what I mean.

There is no time to waste. You don’t expect to get hit with sort of things like osteoporosis and this that and the other. And some people don’t expect to get hit by death at 60. And I honestly, I honestly believe that that is what your life is about. It is about making the most of it, and doing it. And that is it. So you know, I am in denial about this. This is for when I am elderly and at the moment I am not elderly. Because I have got this problem with being elderly.

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Iris feels that she is doing everything she can to manage her osteoporosis well, but she would…

Age at interview 60

Gender Female

Age at diagnosis 59

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Like being in denial for a kick off and my belief is that I am doing everything I can, to, I’m working with the tablets and everything to prevent, that’s my belief that I’m preventing it getting any worse. And its my belief that I am doing that. As I say, if I had the chance of a, you know, a real consultant, you know, I would try and get them to estimate, what might happen to me, and what I need to look out for and everything. My belief is that I am doing the best I can, and I would advise anybody else to do the same. But whether I find out in years to come, that it wasn’t, it’s not stopping it, well I don’t know.

You are just left there aren’t you, you know, there’s no one
And that’s how you feel?

Yes. I feel that I still don’t know. I am doing the best I can, on the medication that I have been given. But I actually don’t know if it’s going to stop me getting any worse, or whether, I will get worse.

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Sometimes diagnosis of an illness can lead people to review their life and priorities. In the case of Chris the impact of diagnosis led her to rethink her marriage and professional life.

When Chris was diagnosed with osteoporosis it was a wake-up call to change her life.

Age at interview 52

Gender Female

Age at diagnosis 45

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Well, it, yes, it took me a little while actually. In the first six months, I mean it took me a few months for it to soak in really, absorb the reality of the fact that I had this disease and that it was sort of incurable really but perhaps could be arrested. But I’d had it quite badly and I’d left it for so long, or hadn’t left it, I was, you know, it’s a silent disease, you, you’re not aware of it. If you have backache, you have backache. You’re not, you know, it could be anything really. But I just thought, Well, I have this life. I haven’t been happy. I’ve done all the, what I would, you know, all the things that other people wanted me to do and not really done what I really wanted to do. I have an unsupportive husband, who is very much interested in his own needs and not mine I was pro-, I was probably an object for his needs, and his support system for, you know, for him. But I had none myself. I had nothing much from him. So it didn’t, it wasn’t a big decision really, when I look back. Because I had nothing to lose. It was my life, I had this disease, and it made, it was the impetus, it was a big impetus to change my life. It made me realise that actually we only live for so long, and that I don’t want to have to look back on my life and say, Oh, if only I did this. If only I did that That was a real positive effect it had on me. And I did. I got an art degree, I got my MA. I’m not sure at what point what I’ll be doing next. But it will be something I want to do. And I’m thinking about my needs and myself.

Prior to that I was very much the mother and the wife and the, although I had a job, my focus was on the family and feeding that family, and not really feeding myself properly. So it was a, it was a wake-up call, it was very much a wake-up call. And I think probably for a lot of people that have, that are not happy in their lives and are diagnosed with whatever disease and have the opportunity to rectify whatever is wrong in their lives, or is not making them happy, should I say, it’s one’s perspective, isn’t it. And that’s how I dealt with it.

I mean I’ve still got my bad backache, I’ve still got my ankle that’s sore, but actually I’m doing what I want. I’m restricted, I am restricted. And in fact I was doing my MA at the time I did, I badly injured my ankle. But rather than sit back and think, Oh, poor me, I’m laid up no I phoned the university up and said, What help can you get me? I want to do my final show And I went over in the wheelchair. And I got help and I did this big installation and they, they, university kindly supplied me with a pair of hands. So that’s the way I am. And I think that it’s important to be that way.

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Fear of falling and fracturing was voiced by some of those we talked to. Several had already stopped doing sports, like skiing or jogging, because they did not want to take unnecessary risks. Other changes in behaviour included not going out in hazardous weather; not lifting and carrying heavy objects; avoiding drinking alcohol and being careful when they were walking on pavements (see also Osteoporosis and exercise and Impact on home due to osteoporosis).

A few had been fearful at first of falling but as time passed their confidence had grown and their fear had diminished.
Others, like Christine, thought that it is important to not let fear stop her from being active. She strongly believes in the benefits of exercise to keep her bones strong. Robert remarked that initially he was very worried of breaking more bones and thought that the smallest movement could lead to a bone breaking. His attitude at the time was almost to wrap himself ‘in cotton wool’. But through learning more about the condition he realised that this is not necessarily the case. Those who have had a recent fall said that they had been shaken by the experience and it had made them feel very nervous. Elizabeth said that after her last fall that resulted in a fracture she is more afraid of falling and the possibility of fracturing again. Pat has had pelvic fractures at least three times and fractured ribs around six times. She, like others, said that her main fear is to fall when no one is around to help.

Christine overcomes her fear of falling because she believes being active is very important in…

Age at interview 68

Gender Female

Age at diagnosis 61

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I think I have mentioned this before, but it is to do as much exercise as you possibly can. So that even though I am very limited in what forms of exercise I can do, I still try and do little bits of movement. And especially although you are not seeing it on this videotape, weight bearing exercise, which just means maybe standing up and sitting down, and standing up and sitting down as much as possible because that will keep the bones strengthened. And I have been given this advice and I believe it strongly.

Are you particularly aware of preventing falls? Are you particularly afraid of falling?

Both, I am very aware of falls and the possibility of falls. So in my house I have put in extra handrails and grab rails wherever I can. But, yes, fear of falling is a separate thing from being aware of falling, and is, I think, much more negative thing. So I try and fight against the fear of falling because I think that is inclined to stop you doing things. And because I have just said I feel very strongly that I must do things, that is the best way of keeping the bones strong, I cannot allow fear of falling to keep me just lying down.

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Self esteem may also be affected by osteoporosis. Physical problems, like carrying or lifting, left many of those we talked to with a feeling of losing control and realisation that they need to be dependent on others. Susannah found this situation particularly difficult to accept because it made her feel like an ‘old lady’. Jane, who is in her early forties, also said she felt like an ‘old lady’ because she had been used to being very active (see also Body Image of people with osteoporosis).
Robert like others suggested that osteoporosis, if severe can affect people physically and psychologically. He thought that depression is one reaction that many people he had talked to experienced following a diagnosis of osteoporosis or a serious fracture. Robert said his personality had changed quite a bit since his fracture and he was now more cautious and reserved. He, like Jane was angry for a long time after he was diagnosed because of the long delay in getting a diagnosis.
But it is also important to bear in mind that feelings and emotions did often change for the better as people learnt to manage their symptoms or when they become less severe. Rose described how her outlook of life changed as she recovered her strength, mobility, self confidence and the intensity of pain dropped to manageable levels.

Robert suffered from severe depression and needed the help of a psychologist to overcome his…

Age at interview 49

Gender Male

Age at diagnosis 43

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The suggestion by Professor [name] was to have a one to one with a psychologist. She didn’t think I’d benefit from a team thing where we’d all sit round in a circle I think I needed one to one.

And I went and met this psychologist and we basically stripped down why I was depressed and we basically, you know, we went through all the problems in my life. Well the anger about the operation. Did I, you know, had to let go that I wanted to go and see the surgeon. I wanted him to, I wanted answers. I wanted him to tell him why, tell me why that he had done all this and why he had made these mistakes. And she, you know, we sort of broke everything down even to my family life to what things annoyed me at home and what things got in my way, you know, and how we had to deal with like [wife]’s mother was ill at the time. So we had to deal with, you know, that [wife], you know we had to deal with that and I had to deal with it better because I felt as if [wife] was rushing off to see to her mother when I was ill. You know and all this sort of problems I had. And basically it was there where I got the strength back if you like. And basically to regain control and you know calm me.

It was all down to this osteoporosis. it’s, you know, these mental health feelings and so it didn’t just affect my body it affected everything, you know. it’s a lifestyle change that really. It, it especially having a disease like this at my age I think, I think it’s knowing that you have to deal with something. I think we’re all trained to think we have an illness and two weeks later we’ll be better. We take a tablet and it will go away and when it doesn’t go away after so long you… it’s difficult for your carer because your carer is dealing with something that’s that she’s got to answer to and, and it’s awful for her because, you know, it’s not going to go away. So you have to look at it, you have to learn to manage that situation and think, Well I’m not going to get better but I can do this, I can do that. I could, you know, what makes you happy. And then I just literally wrote on a piece of paper what, what made me happy.

And this is where the NOS doing the ambassador work for them and talking to groups of people was a blessing in disguise because after I came out the other side of the depression all of a sudden I was strong enough to think, well my life’s empty and they’re asking me to do these things so yeah we could put the two things together and it could work. And it involves me driving the car to different parts of the country which I love doing. I love driving. I used to do it in my job so it’s very similar to my job. I go out and I meet people and then win them over and tell them my story and go away feeling happy. And, and that’s how I’d describe my NOS work. And in the meantime it raises money and it raises awareness. So it, everybody’s, it’s a win/win. So that’s the therapy, that’s my therapy if you like. But it was, this, it was something like probably six to twelve months of going every month to see the, you know this psycho, psychologist and then her finally saying, Well I think you’ve coped with it now. I think you’ve, you know.

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When recovering from her fracture Rose experienced a bout of depression which made her feel…

Age at interview 76

Gender Female

Age at diagnosis 57

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And how did you feel when they gave you the diagnosis of osteoporosis?

Well, I was too ill really to, to feel anything. But the pain, the pain, I can’t describe the pain to you with five fractures happening so soon. I just felt so full of pain all the time. I don’t know, I just, I felt devastated all the, even when I was in bed, you know, trying to recover from the fractures, I felt devastated. And at times, well, at one time I got very, very depressed. I didn’t tell my husband that, but he knew I was. I couldn’t think about anything. And I couldn’t listen to the radio or the television or anything. And he said, he removed the tablets from my side of the bed. I couldn’t sit out you see. But I wouldn’t have dreamt of doing anything like that. But I really did go through a bad time with depression. It was probably just a few weeks, I don’t know. I felt sort of everything was hopeless, you know. I think quite a few people with osteoporosis suffer from depression. But I’ve never suffered from it before or after. Because I’m a very positive person, and as soon as I knew there was something I could do to help myself, I did a lot of fund-raising for osteoporosis, jumble sales, writing begging letters and all, all sorts of, raising a lot of money. So I, I believe in being positive about everything.

But it was that period when you were in a lot of pain?

Yes, a, a lot of pain. You can’t, you can’t be positive then. And that was before I knew that, before I saw the consultant and knew there were the, all these things I could do to help myself to live a, a reasonable life again. I wasn’t going to die. Which, I know it sounds ridiculous,

I didn’t talk to anyone. When you feel really low, you don’t feel like talking to anyone. I didn’t feel like, I didn’t, I just felt empty and I couldn’t talk to anyone. I couldn’t even talk to my husband. So I didn’t, couldn’t do anything. In fact, you know, your mentioning it now sort of just brings it back. I just, I just felt hopeless and helpless. And perhaps this is why I feel so sorry for people who get depressed, because I’ve got an inkling of what it’s like. Although I’m sure some people must get it worse, a great deal worse than that. But, no, I couldn’t talk to anyone. No, you just feel everything’s hopeless.

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Several people said that negative emotions can be kept at bay by developing positive thoughts and a positive attitude to life. Victoria Iris believes it is important to keep active. She has been pleasantly surprised to realise how good and helpful people are towards her. Robert said that it also helps to keep a sense of humour.

Concerns about the future

The people we talked to had one main concern about the future; the fear of becoming disabled and dependent on others. Some also said that osteoporosis did make them think more about old age and the sense of fragility they now felt is related to both their age and illness. Laurence’s concerns were about the prospect of living with pain and his condition getting worse than it is now. He said, ‘I don’t mind dying, I think dying, that’s it, but I don’t like to be ill, don’t want to be ill’. For people living alone, the fear of losing their independence was a big worry because as Susan pointed out she wouldn’t want to become a burden to her children or anyone else.

Sarah fears that her osteoporosis will get worse in the future which will affect her quality of…

Age at interview 61

Gender Female

Age at diagnosis 61

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What are your feelings about the future?

I get a horrible feeling that I’m not really going to get better at, not at all, but I’m, this is as good as it, I’m going to get. And if I have any more falls I’m going to get just worse in that part of my body as well. And you get a horrible feeling that your bones are thinning all the time in the spine. I can just imagine going snap one day. Because I’m not exactly lightweight. And despite, I don’t, I really don’t over, I can’t see that I overeat, but I must do, and I’m putting strain on my back. And this, because it gets a bit upsetting sometimes. I think, I hope, I want to be able to run around with my grandchildren still. I know everybody says that. But I know I’m getting old for running around now, but, you know . . . I don’t want to be invalided. I can’t see me in a carriage.

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Valerie worries about the effect that osteoporosis may have on her ability to be independent and…

Age at interview 67

Gender Female

Age at diagnosis 63

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How did you feel about having osteoporosis? I mean you said that at the beginning you felt fragile?

Yes. No I mean I’m very annoyed about it [laugh] actually. I’m, now I’m feeling less fragile. I’m hoping it’s repairing itself. I was encouraged when I heard that the second scan that it seemed to not be progressing. So I’m looking forward to getting the results of this last scan to see if it’s stabilised. I keep a very close eye on my height. I try to measure myself. That’s virtually impossible [laugh]. I don’t want to shrink.

So that worries you? Concerns you?

It would really worry me because I’m absolutely incapable of being dependant on people and you know, people say, Oh my god You know but quite logically if I got in the state where I was completely dependant on people I would really have to think very strongly about committing suicide because I, my quality of life would be zero. Even the fact that I have no habit of watching television’ I anticipate going out for most of my entertainment and things of that kind. Being mobile is essential to the way in which I’ve always lived. And the same thing if I felt I’d got Alzheimer’s because my brain is absolutely essential and so whether one would have the courage or not but I really cannot envisage being in the situation where I have to be dependent etc. And I have no one to look after me anyway. So you know, there’s nobody whos going to do it except yourself. I don’t want to be a poor old thing. No one’s going to look after me for love so.

Well I mean I’ve tried not to think about it too much but I say with the general thing of being taken as an old lady here. No I’m certainly very concerned about being handicapped in any way. And you know, if I broke something and it didn’t mend very easily. I’m hoping as long as there’s work around you know, theoretically there’s no time limit on how long I can work if my brain is ok and I can hear. And there’s one woman I’ve come across in professional meetings, she’s about 84. She still works a bit. She doesn’t look all that healthy. She has a stick but the problem about that is that I have come across when I went into a job and they said, Oh my god we had this woman, we thought she was going to drop dead You know, that people are judging you on your age if you look decrepit. So that wouldn’t be a very good idea.

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But people were also optimistic about the future and based their positive thoughts on the advances in osteoporosis treatments, ongoing research, monitoring and self-care. Some people, like Carol and Iris, were doing everything they possibly could to help themselves to prevent a deterioration of their condition. But Jenny, who stopped taking medication due to severe side effects, worries about the future implications of this for her bone health. Others, like Neville and Robert, said that they ‘take every day as it comes’ and do not plan way ahead into the future as they would have done before they had osteoporosis.

Keith feels reassured that any change in his condition will be monitored by regular DXA scans and…

Age at interview 55

Gender Male

Age at diagnosis 54

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And what are your feelings about the future?

I think you know it’s a case of you know, monitor it, and you know if it’s under control and if it’s not going to deteriorate to a dangerous level then you know I’m not particularly worried. But obviously there, I think there is a need for it to be monitored. And Professor [name], he said, you know we’ll get, we’ll get another scan in two years time, he said I don’t think it’s worth having, having one between then. And so you know by the scan every two years or something, and I mean okay it’s all you know about sensible, that’s all like the sensible thing to do I think. And you know I’m not going to get, I’m not going to worry about it unless it starts getting dangerous you know? I don’t see any reason why it should be given that you know that treatment exists you know?

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Rose feels positive about the future because of the greater knowledge now available about how to…

Age at interview 76

Gender Female

Age at diagnosis 57

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And suddenly I realised that osteoporosis was treatable and that, and already I was feeling a lot better after having hydrotherapy and physiotherapy. And I then realised that it wasn’t so bad after all, that, you know, I had some, had some good life ahead of me. And I realised that when I came out of hospital and things started to improve really, well, almost dramatically once I started to walk again. And I went on holiday in our caravan and I was able to walk a bit and sort of enjoy life. And as time went on, it did take a little while because I had, remember I had five fractures, and as time went on I, I joined a local group and did all sorts of positive things. And so although it’s pretty awful at the time when you have your fractures, they do heal eventually. And if you’re lucky you don’t get too much pain in the future. And you can always do things to alleviate that. You know, take a couple of painkillers or, or just have a sit-down or even a lie-down for a little while. And so I think osteoporosis is, although it’s not very nice, it’s, it is controllable and you can eventually lead a, quite a normal life.

What are your feelings about the future?

Well, I feel quite all right about the future. Because now we’ve got so much awareness of osteoporosis and so many drugs available to help people, I think, you know, we’re very lucky indeed. And I think of, you know, when I was diagnosed, when there wasn’t anything. And now they know all the right things to do, you know, the exercise, the diet, everything, I think, I think the future is quite, quite good.

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Messages to others with osteoporosis

The people we talked to offered many different types of advice based on their experiences of having Osteoporosis. Here is what they said: Managing your...