Osteoporosis
Family, friends and support for people with osteoporosis
Here people affected by osteoporosis talk about family and friends and the times when they have needed practical and emotional support.
Many people needed practical and sometimes emotional support when they had experienced severe pain due to fractures and/or deterioration of their condition. Usually the need for support diminished as the fracture began to mend and people’s mobility improved. Often people’s medication controlled osteoporosis well, meaning that it prevented further bone loss, thus allowing them to maintain an independent lifestyle (see also Pain and medication in osteoporosis and Impact on home).
Several of the people we talked to however, needed some degree of practical help on a regular basis, which they mostly received from their family, friends and neighbours. Some said that children, partners and other family members gave practical help with cooking, housework, shopping, transport and personal care. But others lived alone with no family nearby and so, for practical everyday things they relied on friends, neighbours or paid help.
Although Joan lives alone she has great support from her family, her neighbours and from paid...
Although Joan lives alone she has great support from her family, her neighbours and from paid...
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My, none of my family lives nearby. They all live a long way away. My daughter lives in the U.S. My two sons live south [city] and the other was in [county] Quite a long way away I’m afraid. And my dearest, dear friend she sold and moved away and we. She still telephones but most of my friends now I have to go and stay with unfortunately.
But do you have sort of good neighbours and friends around?
Yes, yes I have good neighbours and we’re a. The area in which I live is wonderful. There are. We do tend to know our other people and I do have people, neighbours that I ask. For example if I have something, if I have gone shopping and there is something in the car they have put it in the car for me I come back and I wait until I see somebody that I think could. I trust, and I will ask them if they will help me just to take it into the house for me. And I’ve, I’m now, that doesn’t bother me anymore. I feel confident to be able to ask other people for help when I need it. And that is one thing it took me a long time to learn.
So I have a cleaner to help me in the house I have, it’s quite a large house. They don’t clean the whole house at a go but they... I have a cleaner once every two weeks and I also have a young man who comes to do the garden once every two or three weeks. And over many years now he has, I would say, become a friend and he will help me do a Christmas tree. He will help me with any small job. I had a small strip light in the kitchen. I can’t do that or change a bulb. And I wait. I keep the list by the kitchen calendar and there is a list for either him or for a son or a grandson, for the next person to come. But I keep a job list and I think that’s a very sensible thing to do. Those small things like the electric bulb and cutting something in the garden or.
Because most of my problems, I mean I’ve had other, other medical problems I have had, two cataracts removed from both. Cataracts and the obstructive jaundice is always really my elder son. He has been absolutely wonderful. He is so important to me. And he will not every night now but probably four times a week will telephone me. Always at 10 o’clock at night. The telephone rings and I know it’s him. He is very important, he has a. He’s a very busy man. He has a very demanding job and a wife and three teenage boys all of whom are doing their A levels or GCSEs at the moment and also a very full life. And he’s an optimist as well [laugh].
Do you see him often?
No, not often enough but we talk a lot and I can always talk him, telephone him in the day at work if I’m, if there is something I need immediate advice about. And he will tell me whether he, “I’ll call you, I'll call you in half an hour mum”. So he’s always available and he will. Any time I have had a big problem he will always, he will come immediately and the other son will also come. It’s not been as easy for him but yes he will come.
I live alone. My friends, we all accept each other’s difficulties or failings and you just accept whatever the situation is. I’m very grateful the fact that my family love me and my grandchildren.
Two weeks ago my eldest grandson in England turned up on my doorstep with a friend who’s at university here, had been visiting him and they both came to visit me. And see if there was anything they could do for me, which is very nice and I felt very moved the fact that a grandson would just come to see me, to see what he, if there was anyway he could help me.
But some elderly people said that they have an increasingly reduced support network as siblings and friends have died or they are also elderly and frail and unable to help. Nonetheless, both Sydney and Beryl mentioned that their main source of support was their friends who were similar in age to themselves.
Beryl's 78 year old friend helps her with the shopping and gardening.
Beryl's 78 year old friend helps her with the shopping and gardening.
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Well [name], a friend of mine, he comes up every day. He does my garden, mind you he’s 78. But he’s ever so good. We, he takes me shopping on a Friday and carries all my shopping. And he does a lot, he does a lot for me.
So he helps you with the shopping and gardening
Any, if there’s. Yeah any job in here.
So and if you in an emergency for instance if you are not feeling very well if you need assistance who do you call, your friend?
It’d probably be [name]. My sister used to live in [town] and it would have been her but she, she died three years ago. Mind she was nearly 80.
Your sister?
Yeah. And
Who else?
I’ve got a friend [name] but she’s 83. Nearly all my friends are my age you see. That’s the trouble.
I’ve got no one really. I thought it would be quite lonely if I never could walk from out this place because you can’t see anyone walk past your house.
A change to domestic roles also took place for a few women who said that their husbands became their main carer and responsible for all the housework.
Sheila's husband took over the cooking and the housework after she was diagnosed because she was...
Sheila's husband took over the cooking and the housework after she was diagnosed because she was...
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You assumed a very important domestic role. You were not just caring for your wife you were doing all the domestic chores. So can you tell me as you were telling me before about it?
Shelia' How you had to dress me and bath me...
Husband' Yeah in the beginning when she first was diagnosed with this she couldn’t do anything. And as for my army training ironing, washing, you name it I had to do it. And bathing, washing, putting her into bed and it was a struggle. But [cough] as for this wonder drug that I call it, she has come with leaps and bounds and if it is available to everybody that was in her position then they would find themselves a miracle because it is a wonderful drug. And as it is now, well she was in a wheelchair then. Then we threw that away. Walking sticks, we threw that away. Then the next thing was to buy a little trolley and that gives her the help she wants. She can’t walk no more than 200 metres without having to stop, sit down. But before then of course as I say, wheelchair, walking sticks before this drug.
And how easy was it for you to assume all these domestic roles when she was in a lot of pain?
Husband' Well I think, I think it’s having a big family, having to share the work. We’ve always done things together or it may have been 80% her, 30 or 20% me but we always had to do it. And if it’s just pulling together. You know what I mean looking after one another. But as I say it was hard at first because you had to push the wheelchair everywhere. Get it into the car and all.
And it was it was reversed because I was working and I would say, not fortunately but it came to the latter part of us retiring rather than the earlier part where I was working. So for me it was a full time job.
To look after your wife, yes?
Husband' To look after my wife
So you gave up working at that point? You were working part time?
Husband' No I, well yes, yes I was working part time.
Shelia' You had to give it up didn’t you?
Husband' And of course I had to give it up. But when I look back it was hard work. Now it’s got easier through this wonderful drug.
And how did you feel about sort of doing women’s work around the house' ironing, cooking, hoovering?
Husband' Didn’t, didn’t bother me.
Shelia' Well I always used to do the cooking at one time but now he does it all.
Husband' I do everything. And you just get into the routine. And keeps you out of mischief.
Shelia' I mean it was hard at first for him because obviously he wasn’t used to doing all the ironing. I always did it. I always did the cooking, the ironing,
Husband' Everything
Shelia' The cleaning because he was working. I did everything. And then, then the roles reversed. He had to do it all so it was difficult for him, you know.
Husband' As you can look, see by this I haven’t done a bad job [laugh].
This is very good [laugh].
Husband' No it’s the thing that you, you’ve got to get into and look aft
After her fracture, Pat's husband worked full-time and looked after her at the same time.
After her fracture, Pat's husband worked full-time and looked after her at the same time.
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I don’t know what I’d do without him, I really don’t. He’s been brilliant with me, as I say, since 1993. He’s been superb. As I say, I mean when I was ill he used to have to lift me into bed, lift me out of bed, take me to the loo, bring me back, undress me, put me into bed, get me up, dress me, prepare my meals then, luckily I only have cereal for breakfast like, but make me cups of tea and all that sort of thing, make the bed, change the beds.
And were you a good patient?
Yes. No, I was not a bad patient, I was a good patient. No, I think, “No, he’s got enough on.” I mean and all this was while he was working full time.
So how was he coping? Was he coming home at lunchtime and things like that?
No, because he works, is it 12? about 12, 14 miles out of [city] and they only get half an hour at lunch hour, at lunchtime. So he used to bring my breakfast. And then he used to bring a, a flask of water, milk jug, sugar basin, cup, spoon, knife and then he used to do me a box with cream crackers and cheese in for my lunch. So I used to do that, you see. And then I had to wait while he came in at teatime to get a meal between us. He used to get me a meal, you know, get me up out of bed, or get me up before he went out on the morning and I’d potter about in the wheelchair, potter into the kitchen and do the vegetables and that sort of thing.
Did you need help if you wanted to go to the toilet, for instance or?
Well, by then I was getting that I could pull myself up to standing, so I could sit on the loo. You know, over a period of time I just gradually improved, so that I could. Walking was the biggest problem. But if I could pull myself up on the hand basin, then I could, as long as he didn’t put the lid on the toilet I could manage.
Older children of people who have severe osteoporosis tended to rally round and gave emotional or practical support. James situation has somewhat changed since his daughter left England to live abroad. She helped him emotionally and practically, particularly driving him to his hospital appointments.
Neville thinks himself very lucky' to have two sons that visit every week and do things for him...
Neville thinks himself very lucky' to have two sons that visit every week and do things for him...
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I can talk to my wife about anything, anything at all. She’s very, very supportive. Well, we’re very supportive of each other. I mean we should be. I mean we’ve just had our 50th wedding anniversary.
Congratulations.
And that was a fortnight ago actually, a fortnight ago tomorrow. So that was good. But she, she’s been a real brick. She’s been absolutely fantastic with all the problems I’ve had over the years, the last few years. She’s been absolutely wonderful.
And what about the rest of your family, your children?
I have two boys, [son] and [son], and they are very supportive, both of my two sons are. And I’m not allowed to cut my lawns any more, and one of my boys will come and do it for me as they don’t want me breaking bones and things like that. And I never do any decorating or anything like that now. My sons do it for me. And also my grandchildren too, because we have some adult grandchildren and they’re very supportive and they help. And even my granddaughter’s boyfriend [phone] comes and decorates for me. So it doesn’t, so I don’t overdo it.
I don’t like asking people to do things for me. But it’s now got to the stage where unfortunately I have to. But my two, as I said, my two boys are absolutely fantastic and they support me a great deal. Because they live, one lives in [town], the other one lives in [town], and they come over two or three times a week. Anything wants doing, they do it. Very good.
Yes, I think I’m lucky that I’ve got two brilliant sons. And, well, and my daughter-in-laws are, they’re the same, you know. They all help. They know the situation as it is, and they appreciate the fact that I can’t do things that I used to do as before.
Several people said that when they had been unable to do things for themselves they had received help from Social Services. For instance, James and his wife have home help for two hours each week and Pat had home help and a care assistant for two years. A few, like Joan, are in receipt of a carers allowance that enables them to pay someone to look after them and to help them with the cleaning. Cressida doesn’t like the idea of having to ask for help because she would feel a failure whilst Emma hasn’t thought about asking any organisation for help because she has the support of her son.
But not everyone felt that they had received the help and support they needed.
Sydney said that he was discharged from hospital too soon after his operation and had no support...
Sydney said that he was discharged from hospital too soon after his operation and had no support...
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And he said, “You’re ready to go out home it’s a weekend on the Friday”. They got some equipment like little table that I got and the, the thing to go over the toilet thing and they said, “We can get you home but we can’t get this”. I had two, two of me nephews, well a nephew and a niece came in at the same time and of course they brought me home and I wasn’t fit, I got, I got, I got home, got into this chair [laughs] and I was puffing and blowing like and got into the chair, the neighbour, one of the neighbours knew I was going, two doors away an elderly lady, she was banging on the door and I couldn’t get out of the chair [laughs]. I rang the nurse and I said, I said to Doctor [name], don’t worry I, I give you his same word that he gave me and I said, “I”. I said, “I had a hell of a job to get out”. I said, “I wasn’t fit to come out but I didn’t realise that you’re on your own, left on your own I got”.
And I couldn’t have, I don’t know how I struggled out and I got to the door because I guessed who it was and she’d got a malt loaf for me, you know, which was nice because I got no preparation, I hadn’t got no, when I went in I got nothing, me mate that still comes in, he got me address book and that sort of thing because I couldn’t let any of me relatives know, and he came in, got me address book and well he brought me some pyjamas and that sort of thing because I was, well, in the first instance on me bike you know.
And then as I said coming home, I got into this chair and, I’d only been up the hall twice on the hospital and then down the stairs with handrails and their help kind of thing, and he let me out like that and I rang the doctor and he said, “What do you want to go back?”. A senior doctor said that to me, “What do you want to go back in?” And I said, “No that I don’t”. You know? But I’ve got an elbow, what they give me an elbow, one of my elbow was up here, still there, I couldn’t use it you see until they give me a shorter stick and that was a big help. With a shorter stick you know you could, I couldn’t get up and on to it [laughs].
Did you have a nurse coming to see you at that time?
Came about doing a bit of therapy, but the weather was so bad they wouldn’t, I didn’t go out, I went out once I think because the weather was so bad and he said, “We can’t take a risk because of you slipping”. And, I, well I went up and down the garden path a bit then and, eventually I got to the bus stop, you know, with him when the weather was a bit better and to do the, yeah about to the bus stop and he said, “Well let’s see if you get on the bus alright”. I said, “Well I should be all right now” [Laughs].
Who was helping you around that time? Were you having meals on wheels?
Only what me mate got, they had no plans for me, no, no me mate used to get me prepared meals from Marks & Spencer.
Okay someone was coming to help you around the house, housework…?
Only a pal of mine, that was all yeah, a pal of mine and he still comes in, probably be in tomorrow and he’s been ill himself now since, so, I mean that’s a long time ago, he still comes in, he’s been poorly himself, in fact he had a fortnight in hospital, well I was in Tenerife you see? Because I go to Tenerife Christmas.
Were you put in touch with the Social Services?
The nurse came in a few times an
Jane received no support for her and her new born baby from outside her family.
Jane received no support for her and her new born baby from outside her family.
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Well the way I got through having the baby was I had to go to my parents’ house where I’d grown up and actually my dad looked after my son. And my partner had to stay in our home in order to work. And his practice were very good and paid for him to go to visit me every weekend. But it was most kind of horrific but fairly levelling when you have a child the fact that I didn’t kind of get freaked out by anything about having a child because I was quite self-absorbed at the time just trying to wake up in the morning. And it was quite, you know, looking back on it was quite hilarious. But even to feed a child was quite, meant my dad had to get up at two o’clock in the morning to carry my son to me, to feed him.
But the other horrific thing that I forgot to mention was that when I got diagnosed of having osteoporosis my consultant immediately said, “You’ve got to stop breastfeeding.” And I, and breastfeeding up to that point, this is six weeks, had been horrific. And I’m quite firmly of the belief that there was no breast milk in my body whatsoever. And my son’s weight just dropped off the Richter chart. But because I was in between cities, you know, no one was really watching it. And I had a lovely midwife come to the house who told me to put on hold my medical interventions to give my son the best chance of having a healthy outcome. And to carry on breastfeeding, which I just thought was just horrific thing to say to me. And she was quite adamant that if I put him on formula that she’d just come from the hospital where a baby had almost died because they’d been put on formula.
And I suppose it keeps you very kind of sane because the said midwife was ordered out of the house because she obviously had no idea what a fractured spine felt like. And so I was, I did feel guilty that I couldn’t feed him but I was quite under the illusion that I wasn’t giving any breast milk any how. And I needed that milk. And so even when you’ve got a, somebody’s told you exactly what’s wrong with you, you’ve still got the medical profession telling you that you’re doing the bad, the worst thing to your son. And so that was the breastfeeding element.
So luckily when my dad got up at two o’clock, and we were only making formula, because I couldn’t actually feed him from the breast because my back hurt so much. But it was all quite horrific. So but I was, there was no help from anyone else other than family. And I think the thing with the social services is that if your lifestyle becomes disabled then the intervention of social services is very limited if you’ve got family. And even if your family’s fairly old at the time, that’s how your, you should be looked after, which I don’t think is particularly healthy thing to happen. And obviously my mum and dad loved it, but they were old to have the responsibilities of waking up two or three times during the night to feed a baby. And so that was quite hilarious.
Tell me a little bit because you said you stayed with your parents for six weeks, what happened when you went back to your to the place where you lived? How did you cope then?
Well when I went back it was my partner’s company paid to have an au pair. And because social services at the time couldn’t decide on, if I deserved any care. But, I, you know, I kept trying to point out that I can’t actually look after my son. And so they talked about my partner giving up his job, and becoming my full-time carer. Which would have been, you know, mentally one of probably the worst things that, well second worst thing, being the first was to actually be sent home to get looked after at 36. And so they said that they’d pay in
Social Services had helped some people by making adaptations to their home such as handrails on the stairs and in the bathroom, and elevated toilet seats and extra steps. Betty and Susannah had found the local city councils helpful because they organised free transport services for the elderly and disabled people to go shopping. Local Health Authorities provided some people, like Christine and James, with transport to attend hospital appointments or the rehabilitation centre.
Some people employed someone on a regular basis to clean the house and to do tasks that they found difficult or impossible to do, like turning a mattress or doing the laundry. Several also paid someone to do the garden or to clean the windows.
People also needed help with rehabilitation after a fracture and friends, neighbours and close family helped in different ways according to their free time and geographical proximity. Joan found it a challenge when she fractured both her arms because she lived alone. She had to go into hospital for two months and when she went back home she needed a carer until she was able to fend for herself. Chris also lived alone and while recovering from her broken ankle she had to rely on others for support and was disappointed by the response of some of her neighbours.
When recovering from a fracture, the practical support Elizabeth got from her friend helped her a...
When recovering from a fracture, the practical support Elizabeth got from her friend helped her a...
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Well I… I think to myself that I’ve got to be extra careful. And I… the last thing I want is another fall. But apart from that, I well, I’ve spent the months since I’ve been back here since January just trying to get back to a normal life again. But it’s been a slow job.
Do you feel frustrated by it or …?
I do. I found it very difficult to sit about and not do things. So that to quite an extent I suppose I have tried to push myself.
In which ways?
Well I had to get back on my feet and walk again. And so I have whatever the weather, made myself go out for a walk, everyday without fail.
And in the early days when I found it very difficult, I had a friend who went with me. And I could hold her arm. And we went a little bit further every day. So that I could feel that I was making progress. Because I just didn’t want to sit in the chair and let the days go by and not feel that I was getting better. And so, as I say sometimes it was an effort to go out during the winter days when it was cold and horrid. But I did feel it was important to go. And so we did.
I think you do need somebody. I mean if I hadn’t had this friend here who was wiling to sacrifice an hour say, or roughly an hour by the time she’d got here and you know, every day.
I wouldn’t been hard pressed to do, I wouldn’t, I don’t I would’ve wanted to do it on my own. But fortunately friends here were very good.
And it did enable me to really get going again. Now I don’t use a stick at all in the house. But I do take, always have one when I go out because this city's pavements aren’t brilliant [laughs].
I’ve got two, two grandchildren, two sons, two grandsons. They’re from the French daughter. And well not, she isn’t French but you know what I mean, she lives in France. And one of them is at university here. So I do see him from time to time. And in fact when I came, after I came back and I was, and I was up and thing, he did come and cook me lunch one day. He, well, he rang me up and said could he come to lunch. And I said, “Yes, but you’ll have to bring it. I’ll pay, you buy it.” And I was highly amused because I thought he’d probably go to [supermarket] and buy you know something that he could, but he didn’t, he went to the [name] market and he bought fresh sea bass and vegetables in the covered market and then he went to, I think it was [supermarket] well he went somewhere anyway and bought crème caramels for us for pudding [laughs] I thought he did extremely well. And he came and he cooked it.
And he washed up, well he cleared it up and put it in the dishwasher afterwards. You wouldn’t have known he’d been here afterwards. So, I rang my daughter in France and said, “Well you certainly brought that one up properly.” [laughs].
Chris who lives alone, found it hard to rely on others for support when she was used to being so...
Chris who lives alone, found it hard to rely on others for support when she was used to being so...
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It does worry me, inevitably. I mean, you know, if you’ve got a problem walking, you know, it’s just the practical things that are really difficult. I mean I, I am a very proactive person. If I need something, I go and get it. But actually there comes a point in time when, if you’re physically unable, no matter how motivated you are, you do need other people’s help sometimes. Like my father, who’s 84, bless him, said, “I’ll come and stay with you, get the shopping for you.” I mean, you know, that’s kind, but, you know, what a position to be in really, you know. He wants to and it gives him purpose and I’ll, you know, that’s fine. But I’d rather not be in that position.
And what about friends?
I have some friends and they did come and help. But they have their own lives, they can’t be around, you know, all the time. So, and my closest friend lives in [county]. So, you know, she came over the Easter period to help me, you know. But at my age, who wants that? You know, she’s my friend, I don’t want her, you know, I feel embarrassed by it. It’s not the sort of thing I’d want.
And what about your family? Do you have relatives …?
I have family, yes. I have, my brother every few months used to come down and do little jobs for me. And in fact he’s coming down next week to do a few things for me. But I’m a very independent person. I don’t like asking too much. And maybe that’s a fault in me, but actually that’s the way I am. And it’s given me a taste, interestingly enough, of what it’s going to be like when you’re very old and you don’t have the choice, if you get there, should you get there. It’s, it’s been a real eye-opener actually.
Can you tell me more about it?
Well, having been a lot on my own and not having a great deal of outside contact and being reliant on other people and not being able to get out, it’s just soul-destroying, it really is soul-destroying. Luckily for me I’m at my, I’m at this age and I do have things to look forward to. But if this accident happened at 75, 80, I don’t know whether I’d have had the motivation to do what I did for myself, because I would have been that much older.
Sometimes people needed emotional support. Several said that after diagnosis, surgery or when they felt low following a fracture they talked to their partners, children or friends about their fears and concerns. Whilst many people said that having osteoporosis hadn’t affected relationships with their family and friends, in a few cases osteoporosis had affected relationships. Chris said that her diagnosis led her to revaluate her marriage after her husband failed to give her the emotional support she needed. After taking part in a pain management course, Robert learnt about the importance of talking to his wife about how he feels.
Chris decided to leave an unhappy marriage after she was diagnosed with osteoporosis.
Chris decided to leave an unhappy marriage after she was diagnosed with osteoporosis.
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Personally when I found out about my osteoporosis it made me review my life. Because I had it quite badly in my spine, I had it quite badly in my spine. My hips were okay. But I was 45 and had had a very unhappy marriage. I met my ex-husband at 19, he was my first boyfriend, came from a Catholic background and had the attitude, you know, that my mother instilled in me, “Once you’ve made your bed, you lie in it.” But actually I’ve had a very unhappy marriage. And I’ve thought about my ex-husband’s reaction to it, and as usual there was no emotional support whatsoever. The only thing he did was to go to Tesco’s and buy me a little book on osteoporosis, when I said that I needed some sort of emotional support. I had to laugh, but it wasn’t funny really. Anyway I think it was the beginnings of me to start, started really valuing myself and my life. It had a really, that was the silver lining to the whole situation. And to cut a long story short within less than a year I’d asked my ex-husband to leave.
Have personal relationships in any way been affected by osteoporosis?
Yes, definitely. My marriage broke down. But then it was just an impetus really. My ex-husband’s reaction was a similar reaction I got generally for many years anyway. And it just so, was so much in my face that I couldn’t, you know, walk away from it. It was something I had to face and deal with.
There, there was no support, no emotional support whatsoever. And in fact when I asked whether he, I said, “I do need some support here” that he, he got rather horrible to me actually. And, because I was there for his needs. My needs were really, didn’t come into it really. And I had to see it for what it was. I mean that side of him was there in the marriage anyway. And it was just facing up to it really.
I think anything sort of traumatic in any sense, I mean you get told you’ve got this disease, it makes you, I think anything like that makes one review one’s life. But it was the consequence of my ex-husband’s behavior towards me as a result of that, that was a repeat pattern of behavior in our marriage, that made me realise that life, you only have so many years in life, you’ve got to make the most of it. And it made me value my life far more. And as a result of that I did all the things that I needed to do, that perhaps I knew that I should have done many years ago but didn’t. So it made me value myself to a far greater extent.
Yes, definitely. My marriage broke down. But then it was just an impetus really. My ex-husband’s reaction was a similar reaction I got generally for many years anyway. And it just so, was so much in my face that I couldn’t, you know, walk away from it. It was something I had to face and deal with.
There, there was no support, no emotional support whatsoever. And in fact when I asked whether he, I said, “I do need some support here” that he, he got rather horrible to me actually. And, because I was there for his needs. My needs were really, didn’t come into it really. And I had to see it for what it was. I mean that side of him was there in the marriage anyway. And it was just facing up to it really.
I think anything sort of traumatic in any sense, I mean you get told you’ve got this disease, it makes you, I think anything like that makes one review one’s life. But it was the consequence of my ex-husband’s behavior towards me as a result of that, that was a repeat pattern of behavior in our marriage, that made me realise that life, you only have so many years in life, you’ve got to make the most of it. And it made me value my life far more. And as a result of that I did all the things that I needed to do, that perhaps I knew that I should have done many years ago but didn’t. So it made me value myself to a far greater extent.
Laurence and Robert pointed out that sometimes family members did not really understand what it was like to be affected by osteoporosis, in particular the pain involved. Since it is a silent illness Laurence and Carol felt that people sometimes failed to grasp its severity or forgot about the pain they were experiencing because unlike a fractured arm, you can’t see it.
Laurence's family is concerned that they might also develop osteoporosis and he wishes that...
Laurence's family is concerned that they might also develop osteoporosis and he wishes that...
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I mean my daughter hopes that she won’t get it but she it’s hereditary you know what I mean. My mum had it as I’ve said and my wife’s mum had it right. My wife she went down to see a doctor and she wanted to go on HRT because she didn’t want to get it right she, she thought HRT strengthens the bones blah, blah, blah but she really she doesn’t want to have to put up with the burden of having to look after me. Because when my mother before she died she was like really round, round shouldered like you know. I in especially I suppose my wife doesn’t won’t want me to get like that for having to look after me that’s what I reckon anyway [laughs].
I wish I’d I was under the club or something or other it might be in me back then when I was first in, [wife] said to me, ‘What you whistling for can’t be nothing wrong with you.’ She said, ‘When are you going back to work?’ [laughs]. I said sometimes I wish I, you know, I had a broken arm and I had it in a sling or something so people could see I’d got something wrong with me. But when it’s the back people can’t see that, you know. What you got wrong with you because it’s inside, you know, yeah.
Yeah she’s concerned that she’ll get is as well, you see. I think they’re all, all me family are concerned yeah they’re they might end up with it, yeah. They are getting to that stage, yeah.
Friendships can be affected when people become ill. While many said their friends had been an important source of support, a few people had lost contact with some friends. Robert had lost contact with lot of his friends because he couldn’t take part in the same social activities and so they had drifted apart. Chris said that her illness had shown her who her true friends were.
A few people said that being in pain changed their personality which had affected their relationships. Robert felt sad that he has lost contact with his siblings after becoming ill because they didn’t understand what he was experiencing. While she was ill, Jane said that her and her partner ‘pulled together’ in order to cope with the situation but after the urgency of their situation subsided this connection ended. When Robert and his wife stopped working after he was diagnosed, they had to find ways of managing the greater amount of time they spent together so that it didn’t affect their relationship. For younger adults like David, the relationship with his family is important and they have been very supportive but he is now more likely to confide in his friends rather than his parents. Others, like Gloria and Jenny, felt reassured to know that their partners were concerned for their welfare but said that osteoporosis hadn’t affected anything.
David is grateful he has a lot of people he can turn to for emotional support.
David is grateful he has a lot of people he can turn to for emotional support.
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Who has provided you with emotional support when you need it?
I mean obviously my family and friends have been good to me, family over the last 23 years I mean, or 25 years even, but 23 years since I’ve been ill, have been fantastic you know? And I can’t ask for anymore, you know but I think since I’ve become older since I’ve got more independence you know, I have tended you know and I’ve become a little bit more of a private person in a way, and I am different when I’m in my family to when I’m with my friends, I might open up more you know more you know with my friends now, and tell them stuff although you know they might not all understand exactly but they do know if things are happening or, I mean you know I might moan, I can, you know I can moan to them more, whereas my family I can’t really moan so much. I mean you can moan, but you know you feel bad about moaning or, you know? But with my friends you can say, “Ah I feel like crap today.” And do you know what I mean? But with my family I am quite, you know, you know I think I am more you know kind of private and reserved than what I have been in the past. I don’t know whether that’s my age or just how it is. I mean I will tell them things don’t get me wrong, you know, but I think I tend to you know open up more with my friends, you know?
And when I was at Uni like you know my personal tutor was fantastic. Helping me through my work and when I broke my leg as well he was really good. I know he was excellent, and the you know the people at work are good as well, you know managers, supervisors, you know kind of spending more really than that they’re do, if you’ve got any problems whatsoever you just need to ask and tell them you know, and they’ll help you in any way they can.
So I’ve got you know a lot of people I can turn to, and I think that is really important you need that. You can’t be alone. If they ask you if you’ve got loads of stuff bubbling up inside I think, you know, you need that, you need that emotional support ‘cos that’s just as important as the medical, you know?
Some people had worries about how their illness might affect relationships in the future. Emma is concerned about her health deteriorating and the responsibilities it would mean for her children. Laurence thinks that his wife wouldn’t want the responsibility of looking after him if his condition were to worsen. Laurence’s children are also worried about getting osteoporosis because there is a history of it on both sides of the family
Emma doesn't want to be a burden to her children.
Emma doesn't want to be a burden to her children.
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That worries me sometimes, yes. I think I will become a burden to my children or a burden to some thing, somewhere, or a nursing home or somewhere that I will feel that… They must be doing for me probably but I will feel that I’m a burden to them, that’s what it’s going to feel eventually.
So that’s your concern? For the future?
Future, yeah.
Have you talked to them about it?
No, I haven’t talked a such but I have mentioned to them that if anything happens and you can’t manage, please put me in a nursing home, I don’t, I won’t mind. I know that it will be last place I would like to go but I try to be independent. So, I don’t know what’s going to happen but my son is never going to leave me, I know that, because he thinks that I need somebody needs around me all the time. But still, he needs to have his own life when he gets married or anything.
Last reviewed June 2017.
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