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Osteoporosis

Body image of people with osteoporosis

‘I was just mentally stuck in the place I’d grown up in, with an osteoporosis mum and aunt who visually just scared me because this was going to be my future.’ (Jane, diagnosed, age 36)

Some people we talked to initially saw osteoporosis as a condition that would lead to height loss and curvature of the spine. Often, they recalled memories of seeing their mothers or grandmothers disabled and their body shape changed by the condition. Fortunately, prompt diagnosis, advances in osteoporosis treatments, weight bearing exercises and a rich calcium diet can all help to preserve and/or build bone mass. Some of the women we talked to found the prospect of losing height or experiencing change in body shape disturbing, particularly women who have seen parents or grandparents severely affected by the condition. Valerie said that she ‘keeps a close eye’ and tries to measure herself regularly. Clare said that losing an inch in height shocked her more than the diagnosis itself. Susan accepts her loss of height but hopes that it won’t get any worse. Chris, who has a curvature at the top of her spine, pointed out that unlike her mother, she was diagnosed at a younger age and is on medication. Indeed, women were reassured by their prompt diagnosis and the fact that they are taking medication.
 
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Marylin hopes that by taking medication sooner than her mother did, she will continue to be...

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Age at interview: 59
Sex: Female
Age at diagnosis: 56
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With my mother having it and being diagnosed at 80 and me being diagnosed at fifty, fifty six, fifty seven, maybe I have got more chance of controlling it. But I don’t know. It just remains to be seen.
 
Was your mother diagnosed following a fracture?
 
No, because she's had so much wrong with her. She was in hospital such a long time with various operations and it was a test, it was an x-ray they did on her back because she was complaining of back ache. And it was an x-ray they did on her back whilst she was in hospital recovering from something else that they found it out. But I think it's quite normal to have it in your eighties, when I suppose you've had the majority of your life. Like if you have got it in your fifties, sixties you want to be mobile. You don’t want it to take over. So hopefully having it in your fifties, going on the treatment, it might make me a bit more mobile for my retirement.
As discussed in other summaries many of the people we talked to were pro-active and through regular exercise, medication and a rich calcium diet aimed to halt or prevent any possible deterioration of their bone mass and hence body shape. Susannah attended regular Pilates classes and she was surprised when her teacher commented on her good posture (see also Osteoporosis and exercise).
 

Jenny’s regular neck and back exercises help to keep her back straight and her neck flexible.

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Age at interview: 62
Sex: Female
Age at diagnosis: 55
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But since I’ve done my exercises, and I do them every day, that the physio gave me, that’s made a big difference. And sleeping at night, I’ve got better pillows.
 
Tell me more about those exercises that you do?

 

Yes, the exercises, they’re quite simple, they’re the neck exercises. And it’s pulling your neck in to make a double chin. You do that about ten times. And then you go back and forward and then round to the side and I do that every morning. And that helps to free the neck. And I do a Pilates exercise on the floor, which I haven’t got room to show you but I could show you, which is extremely good for the shoulders and the neck.  So I do that and as I say I’ve got my routine that I do so I exercise all the body. Keep it all sort of supple.
 
Yes keep my body supple. My back is straight and as I say it is just that bit on the neck. But I’m concerned that I’d hate to have too much of a hump. That, you see people where it, it humps at the back so… but I think by doing exercises and I do them for ten, fifteen minutes every day before I do anything else. And it does keep you supple. 
Some of the people we talked to had lost height and/or experienced changes in their appearance following spinal fractures (osteoporotic compression fractures). Several women said that losing height was a gradual unnoticeable event and they only started to become aware of it when they were unable to reach shelves in the cupboards or when their skirts or night dresses became increasingly longer. Victoria Iris said that she was very busy working and had no pain or discomfort. Pat’s consultant told her that she had lost six inches.
 

Lack of pain and little discomfort meant that Victoria Iris didn’t realise that she was losing...

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Age at interview: 83
Sex: Female
Age at diagnosis: 64
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Now appearance. If you are misshapen as I am. I’ve got the Kyphosis of the back, the hump back to put it in blunt words and may I say here and now I did not know that was coming. I didn’t experience any discomfort or pain which is very difficult to comprehend but it’s true. And it was only when I, after a little while with reaching up into I’ve got fitted wardrobe which I had done after I’d been looking after mother and came back here. I had my house restructured so I didn’t have to get on steps or stools. And it was only when I was reaching to something high in the fitted wardrobe that I realised I was having more difficulty getting it down. And so clothes and being quite a difficult thing.
 
What were your feelings when you realised that you were developing the Kyphosis? How did you feel about that?
 
I didn’t. Well I was feeling fine. I didn’t feel any difference it’s just that I suddenly knew that I, my shape had gone with no discomfort. It’s inconceivable really so that indicates how aware you’ve got to be.
 

Over the years, Joan has lost ten inches in height. Her doctors didn’t make it clear what was...

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Age at interview: 88
Sex: Female
Age at diagnosis: 74
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And tell me about losing height you said that you have lost quite a bit?
 
Yes. Well I don’t know when I lost that, I mean it gradually has gone, I suppose I don’t really know. The first time they measured me I was four foot nine, but I mean I’ve lost a bit since then.
 
And now?
 
Well recently, I say recently, probably six months or more ago they measured me again. I was four foot six.
 
As I say my normal height was five foot six.
 
And how did you feel when you started losing your shape and …?
 
I didn’t notice it. I didn’t notice it for a long while. It was only, the first thing I really, that really drew it to my attention was that I had nightdresses which came down to here and before I knew where it was they were trailing on the floor, and I thought oh well my nightdresses can’t have stretched because they were cotton and you know, they are not like wool or anything like that that would stretch and I thought oh well it must be me shrinking. It was then that I asked them about it, and then they started measuring me.
 
Okay, so it happened quite gradually?
 
Oh yes, yes. It did. Oh it must have been a good five or six years that I was to-ing and fro-ing and not really being told the full story, of it, and what it was. I wasn’t given any idea.
 
What do you mean, do you think that you were not being told everything?
 
Yes. No it wasn’t being explained to me.
I asked different people, but you don’t get a straight answer.
 
Do you remember what you…?
 
No I can’t remember much.
 
Were you worried about it?
 
Not particularly at the time. Because it wasn’t particularly painful. I didn’t seem to be in any great deal of agony of pain. Well then you don’t notice it you know.
 
So you started noticing just when your nightdresses were longer than …?
 
Yes.
 
Okay. And did you have problems finding clothes to fit?
 
Yes.
 
After a while, yes.
 
I can’t wear a bra now. Because my back is a lot bigger than my front [laughs]. And then they don’t, you know, I can’t get comfortable. 
Others like Rose had a different experience. Within a space of a few months she fractured a total of five vertebras that left her in excruciating pain, with significant loss of height and a protruding stomach.
Following body changes, finding suitable clothes to wear can become as Rose put it, ‘a nightmare’. Clothes no longer fitted well and the loss of a waist line meant that trousers and skirts needed to have an elasticated waistband rather than a zip. Joan can no longer wear a bra because, ‘Her back is bigger than her front’. Many women said that it is important for them to maintain a smart, feminine and comfortable appearance and in the absence of appropriate garments they resorted to making their own clothes or paid for alterations. Victoria Iris said that clothes alterations are expensive and sometimes it had cost her the same as the new garment.
 
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Rose has to make her own clothes and wear maternity wear to accommodate her new shape.

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Age at interview: 76
Sex: Female
Age at diagnosis: 57
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So I gradually got to accept the fact that a) I was never going to look the same again. My shape had changed so much. I’d lost 5 inches. And all that has to go somewhere, so I’ve got a very protruding abdomen. And my back isn’t too bad, but finding clothes to fit was just a nightmare. In fact when I came out of hospital I only had one drawstring skirt, a huge sort of thing, and one blouse. So my daughter went to a charity shop and quickly got me a loose top so that I could have a change of clothing. So I had to find ways and means of looking reasonable with my changed shape, which was, you know, pretty horrible. And so I started making quite a few of my clothes. I’m not a very good dressmaker, but [laugh] necessity and all that. And I started buying maternity clothes. All my trousers are maternity trousers. And so with a combination of maternity wear plus making my own clothes I began to feel, you know, I was looking reasonable again. But, and also, I don’t know, you may not want to hear this, but I also started to do some publicity things to raise awareness of osteoporosis.

 

And, as I say, as for my shape, I’ve come to terms with that and I wear as many things as I can to, to look attractive, as attractive as I can be I mean. Not to, I don’t want to be conspicuous for the wrong reasons. That’s, that’s, that would be awful, you know. But I mean sometimes I know it does show.
 

Victoria Iris buys her clothes from one company and has them altered, which is expensive but...

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Age at interview: 83
Sex: Female
Age at diagnosis: 64
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Well. I suppose it’s got to be 15 years ago now. Yes. Yes. But the other thing is that because I’ve got this it’s very difficult to get clothes that you look, well that you feel alright in. You know you’re never going to look like a model but nevertheless if you’re comfortable you get more confidence. And I mean there is a certain firm that I, nearly everything I posses is made and supplied by them. And what I’ve got on today is but the thing is this, they have a great facility for altering and sometimes I’ve actually paid as much for an alteration to get. I once bought a skirt and a pair of trouser and like a 7/8 jacket and it cost me as much to have one of, to have those altered because they all needed something, arms or waist. And it cost me as much as buying a new single article. And I think people, they often say to me, ‘Oh you look nice.’ And I think to myself, yes but I, are you prepared to pay for the alteration. Because it is expensive but as far as I’m concerned there’s only one way.
Joan who has broken her wrists and arms several times said that she prefers to wear garments with long sleeves to cover the scars left by surgery.
Sadness, embarrassment, irritation were all emotions connected with the loss of body shape. Women who belonged to a local support group had found it helpful to discuss this issue and their personal concerns with others facing a similar situation.
 
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Rose feels sad about the changes to her body shape but the support from her husband has helped her.

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Age at interview: 76
Sex: Female
Age at diagnosis: 57
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How do you feel about changes in your body shape?
 
Oh, I was very sad about it. And, but my husband was so supportive. But I felt so, so embarrassed with this awful protruding abdomen. And when I’m with my sister, she’s, she’s now tall, much taller than me. I used to be taller than her. And, and although people say things, “Oh, I’ve got a, a tummy now I’m older” it’s not, not the same at all. And being, if I’d been short always like this it wouldn’t have mattered. But when you’re short and you’ve got a bad back it’s a strain, you know, lifting. I mustn’t clean windows or do a lot of stretching up because it really creates quite a lot of, of backache if I do that. It’s sort of restricted in lots of ways. Which is, is a shame really.
 

Ann’s feels irritated that her body shape has changed because she had always looked after her...

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Age at interview: 69
Sex: Female
Age at diagnosis: 62
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Well, as a result of the four discs slowly collapsing I haven’t had a waist line for about two and a half years so all my skirts, with the exception of two tailored skirts, all my casual skirts now are elasticated waists. And I’ve always enjoyed using a needle so as I said, apart from two expensive tailored skirts, all my skirts are elasticated waists. I’ve altered all of them. This pair of trousers I bought these with a zip and a waist band and I wear these to death but all, all my garments with waist are now elasicated.
 
I do it because I think, “Right. I’m not going to going round looking like a sack of spuds.” But that I find extremely irritating that it’s had so much effect not my body weight, but my body shape, you know. I’ve never had a pot at all. I had a very strict gym mistress in my secondary school and had a very strict anatomy teacher through my orthopaedic nursing and I was always proud of the fact that I never had a pot. But since my waist line has gone I have to be I have to remind myself, you know, to sit up straight and relax while I am sitting up straight with my back well supported. This chair is extremely comfortable. It’s supporting me right where I need it, you know. But that I find very, very irritating, the fact that my body shape has altered.
 
So you are conscious of your body shape?
 
I am conscious of my body shape, yes. From the front it doesn’t look any different, you know, but from the back, yes. Apart from the fact that I have one leg longer than the other because of the Scoliosis now I am conscious of my body shape. I’m not looking for an hour glass figure, please, you know, I’m seventy next birthday for God’s sake [laughs]. You know, but I am conscious of the fact that I don’t want to be seen as to be stooping and things, you know. I just don’t want to end up like that.
 
Have you talked to your doctor about it to the consultant?
 
I haven’t, no. I haven’t but I have spoken to nursing colleagues and girls on the support committee. I’ve spoken to other osteoporotic ladies about it but I haven’t spoken to anybody in the medical profession. 
Sometimes the comments made by other people made them aware of their changing circumstances. Remarks about their rounded back, a large stomach or loss of height can be upsetting. Dennis, who had lost four inches in height, was concerned about wearing his brace in public places. He didn’t like people asking him about his medical condition.
 
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Susannah finds it upsetting when others notice her change in body shape and she realises that her...

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Age at interview: 76
Sex: Female
Age at diagnosis: 47
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I’m getting smaller and smaller all the time. This is the awful thing because my spine is bending more and more. And it was during this last retreat I went on, this girl in front of me said, “Oh why don’t you come and sit on the front. Come and sit on the front row because you’re small.” I nearly died, small, [laugh] me small [laugh]. I found that really upsetting and I said when I saw her after “But you’re smaller than I am.” [laugh]. And she said, “Yes but you’re small”. That really upset me to be seen as small.
 
So it’s a kind of changing perception of yourself isn’t it?
 
Yeah I’m not small [laugh]. But I know when I was talking to this, the counsellor in the college where I’m studying. His wife’s got osteoporosis actually and she’s taking the drugs. Something came up about height. He said, “Well I am surprised because you give the impression of being a taller person.” So probably this, this Eastern external body whatever it is, is still there [laugh]. He said, “You, I’m surprised, because you give the impression of being a taller person.”
 
And when the, the tutor in Chi Kung when he says something about Joanna’s back and they say, “Oh yes”. I don’t know what they can see”. But they must see that my back is pretty rounded. I don’t like that, that’s horrible.
 
Ok so people making comments about your back.
 
But some, yeah. But somebody said to me. I know it was a different Pilates teacher that we had the other day and at the end of the class when I was standing at the end of the lesson she said, “Your posture is very good”. I said, “What [laugh] is it?” And she was surprised that I was so surprised. But this was at the end of a Pilates lesson which leaves you standing well.
 
And well my voice has gone but then I don’t have the force, the strength of breathing because obviously. My shoulders are terribly rounded. They’ve got a lot better thanks to Pilates.
 
But I don’t have the lung power that I’d really want. And any case and then my voice started cracking a year ago when I got very cold. I’ve stopped singing and that was one of the biggest things in my life always so that’s a great disappointment.
While they may still feel a bit embarrassed or annoyed by changes in their body appearance, the people we talked to said that they had adjusted to the physical consequences of osteoporosis. Ann and Elizabeth added that their loss of height had become a kind of a ‘joke’ between them and their grand children, who were now towering over them. Ann said that it is a sign of ‘family closeness’.
 
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At first Rose was upset by her protruding stomach but now she has come to terms with her new body...

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Age at interview: 76
Sex: Female
Age at diagnosis: 57
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My shape was I think the worst thing because, you know, you, you just don’t want to look odd. And I didn’t want to look as if I’d let myself go and was eating too much and not, you know. I feel like having a notice saying, “I, I’ve got osteoporosis. That’s why my shape is like this.” And once, I suppose it was only a few months after I’d been out of hospital, I was sitting in the park with my younger daughter and a woman next to me said, don’t forget I was in my late 50s, “Oh, when is your baby due, my dear?” Oh, that’s when I realised I wasn’t wearing a very disguising sort of outfit. But it is bad, I know. But I laugh at it now and, you know, I don’t, I don’t worry about it at all. I’m lucky to be alive. I mean this is the point, isn’t it? I could have got something and died. 
 

Now she is older, Elizabeth isn’t as bothered when people comment about her loss of height.

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Age at interview: 85
Sex: Female
Age at diagnosis: 66
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I've Shrunk.

 

You have shrunk?
 
[Laughs] It’s very embarrassing because one of my grandsons is over six foot six and I have shrunk. And I really do feel little you know. And he’s absolutely sweet. And he says, “Come on along little granny.” [laughs]. And he’s striding up the road and there’s me going? To try and keep up. But there, there we are.
 
Does it bother you or it’s just?
 
No.
 
No.
 
It, that’s one thing about getting to this age, when, it, those sort of things don’t worry you any more. They really don’t. Not least, there again we’ve talked about it, things like this and lots of things that when you were younger, would have bothered you… don’t’ bother you now.
 
Like what?
 
Oh, I don’t know…
 
Body image?
 
Yes, I suppose so. And I think to a degree years ago there were some things that you wouldn’t have perhaps spoken up and said, “Well I think so and so,” when you knew that it would  cause the other people to either be surprised or offended or whatever and now if you feel like that about something you jolly well say it. And you do have this sort of thing that you’re more, in some ways, you feel more independent in as much as you don’t have to go along with the crowd. You can say, “Well I don’t want to do that,” or “I don’t agree with that.” Or, “I think I’ll stick to my opinions over this and you can all do what you like but this is what I think.” And this is something that you could, you can do with, really without, almost without thinking about it. Whereas if you were in your 20s, 30s you would have thought, “Oh well I’ll just keep quiet and go with the crowd.” [laughs]. And this is, it’s, like quite different feeling.
Numerous and severe compression fractures can cause serious medical problems' shortness of breath, protruding stomach, indigestion problems and stress incontinence because of a reduction in the available space for the internal organs. Robert said that he has developed a protruding stomach and has lost back and abdominal muscle. He said that he can’t breathe using the muscles in the middle of his body without experiencing pain. Joan had severe kyphosis that has limited the amount of space in her chest and has caused pulmonary problems leading to shortness of breath. Victoria Iris said that she is aware of the possible medical problems because she has attended many conferences on osteoporosis and understands that her body is out of alignment and her organs may be affected by it.
 

As a result of his spine collapsing, Robert has lost four inches in height and his stomach...

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Age at interview: 49
Sex: Male
Age at diagnosis: 43
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I never had any physiotherapy after the operation so I never really... All my muscles have wasted away. All these muscles in my, in the centre of my body have just wasted away.
 
The other thing is because I used to be four inches taller than I am now. Part of the osteoporosis was my, when my spine collapsed that, you know, obviously I’d lost height. Now my organs have, have collapsed down as well. So I’ve got now a bulge in the middle of my stomach which it looks like a beer belly but it isn’t. That’s where my organs come out and that’s, that’s a really big, that’s a big discomfort. So I, you live with that as well and that, that’s.
 
All the muscles that have wasted away. Had I probably started working those muscles a bit earlier after the operation. So now my back muscles and my stomach muscles are really and it’s too painful to, to actually exercise them now. I can’t breathe in. If I breathe in using my muscles in the middle of my body I get a burning and that burning never goes away. It’s like a cramp and it, it really is a sharp cramping and that’s where my muscles have literally just wasted away. It’s got like dystrophy, just, just gone. So I, you know, it’s. It becomes sort of like a big swelling which is unsightly. 
 

Victoria Iris is expecting to get more discomfort as she gets older because her body is out of...

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Age at interview: 83
Sex: Female
Age at diagnosis: 64
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But you feel that sufferer somehow embodies better what you experience?
 
Well yes because you see. I’ve mentioned to you all the ways it affects me. Well I’m not suffering because of the pain. I get discomfort and I think I’ll get more as I get older talking to my doctor last week because my body is. My, my body really is out of alignment is the word, I would thought, as I’ve got the Kyphosis so that my ribs and everything will be affecting the other parts, organs in my body. And I know that it did with mother. So that I’m prepared for that. But I still feel that sufferer is a better application as regards to me [laugh]. I’m really quite strong. I mean although they were on about patients quite a few years ago now I’ve not altered. I, I still stick to sufferer. I’m frightened to say it out loud but that’s how I feel.
 
What has the doctor told you about the Kyphosis and how it will affect you?
 
No well, I. He hasn’t told me anything but I, see I’m. I’ve been to a lot of conferences. Well I’ve been abroad quite a lot for pharmaceutical companies. They’ve sent me abroad twice, twice in Vienna, twice in Rome, one in Berlin and there’s some, one in Jersey and as well as two or three in London. And so I’ve learnt a lot from listening what’s going on to others as well. And I mean I knew from my own mother. You see she lost. If you lose the alignment it’s going to affect your organs because they’re going to be misplaced or disjointed, out of alignment. And I must say this though, one thing I’d said I’d been abroad for pharmaceutical companies but one thing and I think I might have mentioned it, that the worst patients I’ve ever seen for all kind of deformity have been men.

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Last reviewed June 2017.

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