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Diabetes Type 2

Adjustment to diabetes and changes in self-image

The long-term effects of diabetes on the people we met, and how much diabetes had changed their view of themselves differed from person to person. Some found that nothing much had changed in their lives despite having diabetes, and they saw themselves and their lives as they always had done before; others said that they went through ups and downs about having diabetes. 

Some people said that having diabetes had had a positive effect on them because it had motivated them to adopt a healthier lifestyle and to take up new activities and challenges. 

 

Despite increasing problems with his feet, Philip says his diabetes is manageable and does not...

Despite increasing problems with his feet, Philip says his diabetes is manageable and does not...

Age at interview: 68
Sex: Male
Age at diagnosis: 46
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I'm finding that as I'm getting older I'm more aware of being a diabetic. And that's mainly because of my feet. But I still travel. I've been away, this is May 2007 and I've been away for three and a half of the four and a half months that we've had. So I've not really suffered because of being a diabetic. My own feeling is right from day one that it's not altered my life, it's not interfered with anything that I've wanted to do and, mainly because I've not allowed it to. It's not a terrifying disease. Type 2 is one thing you get because you, usually because you've always been overweight. So, you know, you reap as you shall sow.

Other than my feet, I could count the number of hypos that I've had on one hand. And two of those have actually been in the last month, where we've been trying a new regime of insulin and it is just trial and error to get the balance right. And at the moment we're nearly there, but my sugar levels are still quite erratic. They will go from anything between 6 to 11 in a day. I've been taught the levels they should be. I've been taught the food that I should eat and I don't eat, and that I should eat and shouldn't eat. My wife is very careful about the diet that she gives me. And we just do not eat fatty food. We have lots of fruit. We have very little red meat. We have fish and chicken. We just eat extremely well, but sensibly.

 

Mike reflected on how diabetes led him to be more thoughtful about himself and his future.

Mike reflected on how diabetes led him to be more thoughtful about himself and his future.

Age at interview: 64
Sex: Male
Age at diagnosis: 59
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I'm trying to think what else has affected me. I think it's caused me to think more deeply about myself and the future and I've realise the need for me to take better care of myself. So hopefully I will live a little longer.

I always remember going to a meeting at [the hospital] with a dietitian and there was a small group of us about ten, twelve, who had all recently been diagnosed with diabetes and the dietician who was very good and gave us excellent guidance, she was telling us what we should be eating and the quantities of food that we should be eating. And we were puffing and blowing at some of the things she was saying, and then she pointed out that this is what she ate normally, and what she did normally, and she didn't have diabetes. And how important it was for us.

So when I look back, I've never been very sensible with eating and drinking or exercising. But now I try to be more conscious and more sensible to negate the effect of diabetes and keep it under control.

 

It took a long time for Isabel to adjust to having diabetes but now she is healthier she also...

It took a long time for Isabel to adjust to having diabetes but now she is healthier she also...

Age at interview: 60
Sex: Female
Age at diagnosis: 57
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And so it's taken a long time for me to adjust, I haven't really acknowledged it in a way. I've taken my pills all the time, but I've not changed my diet, my way of life at all until about four months ago. And I've begun to lose weight and my blood sugar has slowly come down my HbA1C, was 12.5% and its now down to 6. But it was 6, it had only just got to 6.8 earlier this year. So it's taken a long time.

You, it's a sign of ageing and you don't like to acknowledge that, you think you can manage everything and I'm the sort of person that managed a very busy complex life doing lots and lots of different activities, etcetera, and so forth, and this was a sign that I wasn't invincible. And so it was a psychological impact on me, and therefore I resisted it as long as I could.

I'm happier, I'm prepared to talk about it more. And I also am working towards a better lifestyle, a healthier lifestyle for me, which has meant that I've lost weight, which is very positive, and therefore I've gained confidence that I can have a reasonable lifestyle and yet, and keep my diabetes under control. So gaining confidence in it. And I'm not just relying on the medication to achieve that.

Coming to terms with diabetes could also motivate people to make positive changes in their lives and to tackle new challenges. Taking on sports or physical challenges was a way some people used to regain a sense of their physical ability and well-being. 

 

Zoe was determined to prove she could lose weight and walked the Pennine Way.

Zoe was determined to prove she could lose weight and walked the Pennine Way.

Age at interview: 32
Sex: Female
Age at diagnosis: 20
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I think because of the size I've lost a lot of weight, and I was twenty-six stone when I was younger and so many people used to moan about my weight and for some reason I lost it all, which is when the doctors actually say now they think that's when I became diabetic, when I was about sixteen. And then for no reason the weight carried on, you know, it, it grew back up and I couldn't lose it.

And then, when I sold my house and started to live by myself I kind of thought 'oh I'm a big girl to not get things done you know, if I don't eat it's not going to matter' and I managed to lose a lot of weight and I got down to a size 14 again, and I've realised that exercise is a big help in your diabetes.

I took to walking. I managed to do the Pennine Way six times, which was a great feat because I know when I started to do the first one, people panicked because they thought I'd die half way doing it, with, you know, not being a conventional diabetic, you know, eat, taking the pills and stuff. And it was just, I don't know, that adrenaline fix of 'I can do this' I've, you know, 'I may be big but I'm going to get out there and walk and I'm going to prove that'.

 

Having diabetes has made Malcolm determined to keep doing the things he's always done including...

Having diabetes has made Malcolm determined to keep doing the things he's always done including...

Age at interview: 54
Sex: Male
Age at diagnosis: 39
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So has there ever been anything that you feel that you haven't been able to do as a consequence of the diabetes?

No. Up until two or three years ago I used to do an annual Action 100 as a charity, and it was a cycle ride from Bristol Temple Meads station to Chobham rugby club, which is 115 miles. And I cycled that in a day, 8 hours 15 minutes. So, and that's with my chest problems and the diabetes. So, no, it's not stopped me doing anything. Almost to the, the other, taking it to the extreme, I think it's made me do things, you know, because I won't give in to it. And so, yes, I've done these charity cycle rides. As I said, I haven't the last couple of years because I've been ill. But, no it's forced me into perhaps doing things I wouldn't normally have done, just to prove you can do it. I think I'm quite stubborn.

However others found that physical symptoms such as fatigue, painful feet or loss of vision limited their ability to do things they wanted to do; for others their diabetes as well as other illness made them feel more physically tired. 

 

Raj has polycythemia as well as diabetes and sometimes feels too tired to cope with the demands...

Raj has polycythemia as well as diabetes and sometimes feels too tired to cope with the demands...

Age at interview: 42
Sex: Male
Age at diagnosis: 41
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But now both things are combined, the risk has got a lot more greater what it used to be. Before it was clotting, anything like that, you know, something like that, my heart, thing, but in, with the diabetes my chances of the risk is triple now in all aspects. My heart, my brain, my liver, kidneys, everything. So I have to be extra careful, and my lifestyle is now totally different what I used to be. Sometimes I do feel physical limitation, that things I want to do. My mind says, “Yes, I'll do it” but my body doesn't respond. Yes, there's a physical limitation, which I find is really hard, especially when you want to play with the kids - you know children they want to play football, cricket things like that - and you do play, but the thing is I just play for five minutes, ten minutes, and after that you're really exhausted you know. So you can't do the things with the children what you used to do. And if we do go out as a family, something like that, or any activities, I have to be more careful what I can do, what I can't do it. So it has affected my lifestyle a lot.

And work-wise; I do go to work, I do enjoy the work, but when I do it, when I come home I do feel I'm really tired because of the work I'm doing. But before that [diabetes] I used to do so many hours a week, that didn't used to bother me at all, and I used to be a fine, active person all the time. I used to like to go out, everything, but now things have changed a lot. It's not the same as what it used to be.

And do you think it's because of the combined effect?

I think so, because my polycythaemia, when my blood level goes high, I do feel really tired, really tired, really lethargic, all I want to do is sleep. And being the diabetes on top of that, I have to make sure my diet, if my diet is not right, or my sugar level is either going up or down, that is a factor as well. So I think both have combined. And because of that it is, I find it a lot more difficult to cope with the things sometimes what I used to before.

 

Duncan was looking forward to an active retirement but now can't walk for pleasure because of...

Duncan was looking forward to an active retirement but now can't walk for pleasure because of...

Age at interview: 63
Sex: Male
Age at diagnosis: 61
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Well the main thing, which we haven't mentioned yet, is that I did get very bad foot ulcers, and that was one thing that I wished I had had more emphasis on from, well me reading it, but also from the system. I mean I knew that you lose a bit of sensation in your peripheries and after I came out of hospital I went to a private podiatrist who ran filaments all over my feet and made it clear that I actually hadn't got much sensation in my feet. I can feel obviously when I am treading on them - they're not numb - but I don't get any major sensation. And as a result, because I didn't realise just how careful I should be I picked up a couple of bad ulcers. I don't know when the one on my left foot came, but on my right heel I think I had a bad cracked insole in a shoe and I walked quite a long distance on it, and it got so badly infected that as soon as I went to the podiatrist, he put me straight into hospital.

And I spent six weeks in there you know, just mostly, I pretty well discharged myself in the end, because I was just lying in bed, waiting for ten minutes of treatment every day. But it took, that happened in end of January after I'd been diagnosed' So that's a year and a half ago. But I thought everything was going well. You know, I came out of hospital, my vision got right. I started driving again and then about a few weeks after that my, this heel infection came in, and that actually didn't heal over until August.

That pretty well put me off. I had no work - I had to miss working. I had to miss my summer work for the university invigilating. I couldn't do any careers advice, so basically most of that eight months I was sitting in this chair or something like it, with my feet up staring at day-time television which was pretty boring.

Luckily thanks to the podiatrist and the care I mean that got better. But I have been told that I can't, I will never be able to walk any distance on my feet again for the fear of it going. I've got NHS boots which seem to protect it, but after, I had a' Last Christmas I did a bit more invigilation which involved one what would have been a minor walk in the days of my youth, just about a mile, and the heel broke down again and it was another three months before that healed over.

So given the fact that most of the things I intended to do in my retirement involved going up to Scotland, and climbing some of the mountains I've never climbed (because I was up there with cadets so I was responsible for, or going to museums and travelling and that sort of thing) and I can't really do that now. So it has had a major effect, its completely binned all my retirements plans and really makes most things quite difficult.

Negative self-image
A few people disliked the fact that having diabetes made them feel they were labelled 'permanently ill'; several people said that they had gone through periods when they felt like a 'victim' or had tried to avoid the whole issue of diabetes and their health. Diabetes made some people feel resentful because it had stopped them leading a full life and meant they were no longer carefree. 

 

Andy dislikes having diabetes because its taken away some of his personal freedom.

Andy dislikes having diabetes because its taken away some of his personal freedom.

Age at interview: 52
Sex: Male
Age at diagnosis: 52
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I don't like having it. I don't like having to take all the tablets . I don't like' It's taken some freedom away. I can't just go out have a thumping great big ice cream with a chocolate flake in it without feeling guilty and thinking well okay I'd better do something different... you know. I don't like the fact that I can't munch my way through a pound of grapes because that's just too much sugar.

I just' I love food. Okay, I cook for myself. I can't, I can't go and make a meringue. I can't - I don't have a sweet tooth -but every now and then you just want to make something, and I just can't. I just have to think an awful lot more about what I'm doing'

I don't like the fact that it kind of upsets my family far more than me you know. I've got twins, I mean they're 24 now, and as soon as they heard I was diabetic they bought me a bracelet which says 'diabetic'. Wear that for the rest of your life dad. Jingle jingle jingle' It concerns the people that I love, a lot. I don't like that. I don't like having this thing that will never be cured in my life-time. I think that looking at medical research, they are going to be able to cure it a few decades down the line. The work they've been doing is quite stunning, but its no good for my lifetime.

I've got this thing for the rest of my life. I don't plan on dying anytime soon, so you know for the next 40-odd years when I'm in my nineties I am going to be taking 23 tablets a day or more. I don't like that.

 

Stuart describes his discomfort with the idea of diabetes as a physical imperfection.

Stuart describes his discomfort with the idea of diabetes as a physical imperfection.

Age at interview: 60
Sex: Male
Age at diagnosis: 55
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But I don't like having it, I don't like having diabetes. And, but I'm sure there are lots of people that don't like, like having the conditions that they've got. But we come to terms with it and start to, to get on with life and deal with it as best we can.

Is that because it's a label of an illness? Or is it, is it specifically diabetes?

I think, like I said before, it's an imperfection, if you like in some ways. And that, you know, not ever having had any real conditions before, only sort of minor bits and pieces, then suddenly I'm told that my body's not working perhaps in the way it should do. So it's, therefore things aren't, you know, perfect. I think that, I don't like that. You know, I am a little bit maybe, I wouldn't say perfectionist, but I like things to be right. And, you know, if things aren't right, then, you know, I don't like it.

And then it's the same sort of internal, if you internalise that and, you know, make it part of your body, if you like, then if it's not working properly, then it's not right. And I don't like that idea, I have to say. I'm not particularly frightened about the progressive nature of it. It's just concern about having got it and having had it in the first place. And that might sound, sound very strange, but, because I don't maybe look too far in the future. I don't know.

If it's going to happen, if I've done a lot of what I can to stop the progression, if you like, or to make things less progressive, and if it still happens then we have to accept that, you know, it is part of the illness and that. If I'd not paid any attention to my diet and, and not started to look after myself a bit better than I was doing maybe, and, and it got worse, then I would be left feeling that, you know, I'd let myself down, I'd let my family down and let, and let my friends down. So it was for my benefit that we changed the diet and sort of the lifestyle and everything, but it also has a major impact on the family.

Others who felt they were not in control of their weight and/or their blood glucose levels said that diabetes had taken over their lives. Several people said they felt cross with themselves and had occasionally suffered from depression because of diabetes (see 'Depression, feeling down and mood swings'). 

 

Gugu is upset that even after 10 years with diabetes she is still finding it difficult to control...

Gugu is upset that even after 10 years with diabetes she is still finding it difficult to control...

Age at interview: 43
Sex: Female
Age at diagnosis: 33
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Do you know what, because sometimes I feel like my whole life is, you know' We spoke the other day at the group meeting, this woman said, 'I don't like to call myself as a diabetic. I am a first and foremost, I am a human being living with diabetes,' and she says, 'I think that we should all call ourselves that.' And I says, 'Well to be honest with you, I'm not at that stage. Diabetes is me, not me being diabetic.' Do you know what I mean? When you can't control it, I think it is you, because you go around, I mean, you're burdened with this thing that you can't, feel like you can't control, you know, so I feel I'm diabetic first and a human being after. She might feel like that, but she's had it 43 years - still out of control - but she feels now she's more come out of it as the person that she is, and she's living with diabetes. Whereas I find that diabetes is living with me. It's moved into. Yeah, it's moved into my house and it's taken over, you know. I just wish it would pay the rent [laughs].
 

Though some people had come to terms with their illness and the lifestyle and behavioural changes it required, others experienced conflicting emotions as they struggled to comply with medical advice and accept their diabetes.

Last reviewed March 2016.

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