Diabetes Type 2

Getting the diagnosis of type 2 diabetes

Finding out that you have diabetes which is a long-term illness, can prompt all sorts of emotions. Though some people took the diagnosis in their stride, many felt shocked and angry; others said they just couldn't believe that they had diabetes. People can feel overwhelmed when they realise that diabetes lasts forever, requires long-term medication, and needs to be actively 'controlled' by a combination of diet, exercise and medication. Some of those we interviewed who had had diabetes for some time recalled how they were 'in denial' about the disease in the early days.

Helen recalled how all-consuming her condition became until she had settled into a new routine.

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Age at interview: 63

Sex: Female

Age at diagnosis: 60

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I thought I just would get a pill and that would be, you know, miraculously, go out the door, take my pill and that would be the end of the subject. I didn't for a moment realise how much I myself had to sort it out. Also one of these things that, you know, it was, in the initial stages the amount of, you, I was sort of depressed about it' And how all the wee symptoms you had before, like feeling tired... All seemed to be magnified. And also wanting to research so much about it and talk about it, becoming, that was the centre of what, what life was about. But I would have said it was like that till about, and that was in the August I was diagnosed, so it was maybe Christmas it was beginning to become a bit boring. And then, just from then on, you know but it probably took nearly a year.

And I think initially you'll spend the first three months, every minute of every day, this is what your thought is. And you're waking up in the morning and you think about, 'Oh, I've got diabetes' or, 'I've got this problem to deal with or I've got that.' But it gradually gets, when the shopping's easy, and you know what you can eat is easy, and you know the timing and it's easy, and you know how much exercise you're doing and that's, becomes part of your life, so that's how you should do things. You start to get and as the days go by and you don't give it another thought, other than taking this wee pill in the morning.

It took two or three weeks before Paul felt he had taken his diagnosis on board.

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Age at interview: 52

Sex: Male

Age at diagnosis: 38

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When I first, when I was first told I had diabetes it was sort of, flip [laughs] 'What do I do now then?' I think, because basically I mean it's like somebody, it's like somebody hitting you with a cricket bat, you know it's probably the same thing, when somebody tells you, you've got cancer. It does take a shock. It gives you a shock, because you think, 'Quite gutted what do I do now then? Oh. That is it. I am ruined'. And it does. It does take you probably, a week or two for it to sort of sink in and I think, 'Hang on a minute, well it's not the end of the world. I am diabetic. I'm not on my own. Loads of diabetics out there, probably going through exactly the same thing that I've gone through, was going through. Go to a chat with other diabetic societies, there's loads of them. But it did take me a week or two.

And I thought to myself, 'Ahh'. And it is because obviously it is like, it's taking, you're taking away the things that you probably most enjoy, or you look forward to. It's... When you sit down and you think to yourself, 'Oh I can't have that'. Or I have never taken sugar in my tea. But a lot of people sort of go for it, and then they go, 'Oh I can't have sugar in my tea no more. I am diabetic'. Well you can but you go to different sugars. You go to sweeteners or something. It is exactly the same thing, you have, you have this tea then'It's the initial shock of somebody coming and telling you, you're diabetic and it's' you get over it, it sort of sinks in with you eventually, but it is the initial shock. I think you do think, 'Aw, I'm the only one', at that specific time. But you will, once you sit down, and sort of think about it, then set your mind into it. It does come round.

It helped some people accept their diagnosis if they knew others who had diabetes or where there was a history of diabetes in the family. Several said they had no problem accepting the diagnosis because they knew what was involved having seen other people managing to live a normal life with diabetes.

Adrian didn't feel particularly surprised by his diagnosis because his father had had heart...

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Age at interview: 53

Sex: Male

Age at diagnosis: 48

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I don't recall being traumatised really, at all, I know a number of people who have diabetes and who manage it perfectly sensibly and successfully, and perhaps that helped, but they we were, it just seemed to be something that was going to have an impact on lifestyle and possibly life expectation, but it was reasonably marginal. I think possibly also I was not totally surprised, because my father had had a heart disease and diabetes, they were probably connected. He probably had undiagnosed diabetes for donkey's years, but, there we are so, I wasn't altogether surprised because I can readily understand that there might well be some hereditary aspect to that.

For others however, the knowledge of a family history of diabetes had not prepared them and they felt taken aback by the news that they too had developed the disease.

Although his father was diabetic Mike didn't understand much about it. Initially he felt very...

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Age at interview: 64

Sex: Male

Age at diagnosis: 59

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I was very concerned, deeply concerned. I didn't know a lot about it. I remember my father having it and he used to have injections. I remember him having hypos, passing out, and my mother sort of catching him and pushing him into a chair and I thought, you know' So I was very concerned that I had been diagnosed. And didn't know a lot about it or what the long term effects would be, so that was why I spent a lot of time, sort of finding out, reading, to put myself in the picture. So for the first two or three months I was probably very worried thought about it a hell of a lot and perhaps felt a bit sorry for myself, but then, you look at the sort of people who have got far worse things and but then I thought, 'Alright, what do I do?' I thought, 'I would find out as much as I could about it, and do whatever I can to help the situation'.

Tina was diagnosed in her early thirties and felt angry with herself because she had known all...

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Tina was diagnosed in her early thirties and felt angry with herself because she had known all...

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Age at interview: 45

Sex: Female

Age at diagnosis: 33

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Quite angry because I'd, although I was angry with myself, though not angry with anybody else because I knew diabetes was in my family and I was overweight and I knew that I could get maturity-onset diabetes 2, type 2 diabetes, and so I, and I knew all that and I still didn't do anything about it.

So, by the time I got to the point of thinking well maybe I should do something about it now, because I may be getting, you know, I might, because I'm getting to that age, and it was already too late. So I was angry with myself really, yeah.

The fact that diabetes can be a “silent” disease - one that does not immediately display physical symptoms - can make it hard to accept at first. Some felt they were too young and too fit or active to be diabetic and felt complete disbelief.

Stuart felt anger, shock and disbelief at the diagnosis because he'd always been healthy and fit.

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Age at interview: 60

Sex: Male

Age at diagnosis: 55

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It came as a bit of a shock, I have to say. It came about because I had had some nosebleeds. And I'd been to the hospital and been to the GP with these nosebleeds and it was discovered that, that I'd got raised blood pressure. But at the same time the doctor undertook a range of tests and to my horror he came back and said that there was indications of diabetes there, but that a few months previously, twelve months previously perhaps, it wouldn't have been diagnosed. Because they'd actually just lowered the threshold I think for, for the tests and for the results and I would have been sort of forgotten about, if you like, if, unless they'd changed these readings. And they'd done that I think in order to try and identify as many people with type 2 diabetes in order to get the planned services for the future in Br-, and start treatment early, so that some of the other problems weren't, maybe didn't occur.

I was quite surprised and quite shocked and a little upset when I was told, because, you know, I'd been very healthy, very fit, you know, nothing wrong. I'd had no illnesses or anything in the past. So it came as a bit of a shock and a surprise. And I suppose I was, I was a little bit angry too that somebody had told me this and, 'How dare they tell me I'd got this illness and, when I'm so fit and healthy and felt absolutely fine.' I mean even with the nosebleeds I, there'd been no other indication of anything wrong. So, you know, I had a very fit and healthy lifestyle.

Andy had felt as though he was young and invincible and says being told he had diabetes was one...

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Age at interview: 52

Sex: Male

Age at diagnosis: 52

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I have to be honest and say that I don't remember. I know that generally speaking my GP was very good, was very calming, explained everything to me several times, was very reassuring but I can't remember any of what he said hardly, apart from the fact you've got diabetes. You know. I just' I think looking back I was actually in shock.

Because of my chronic pain, I think as a defence mechanism to that, I had convinced myself, irrationally but I had, that I would never have that kind of illness. I was going to live forever. You know, yes I'm going to have sore joints, but I'm going to live forever. And to all of a sudden to feel very mortal and very vulnerable. This was worse than [when] I went through a divorce a few years ago - which was unexpected - this was worse, far, far, far worse. This is' I don't think I've ever felt so bad as that day.

What was it about the diagnosis that that upset you to that extent? Can you just explain?

Just the fact that I'm mortal. You know, if I'm honest. I just never expected to have anything like that. It's not going to it's not that it's not going to happen to me, I just never expected it. I always knew that I was going to have pain and that I've got orthopaedic problems, and probably have to have my knees and my hips replaced and, yeah okay, that's fine, you know it's, it's just stuff that you're going to see the doctors and the surgeons and they sort it out for you and you get, you know, you use your walking sticks or your wheelchair or whatever and you just get on with life.

This is totally different. This is my body not working properly inside and it's going to be like that for the rest of my life. All of a sudden I've gone from just having pain to I've got' I'm hypertensive badly. I'm 200 and something over 100 and something. I've got high cholesterol, and I've got diabetes which is sort of 17 or 18 or some huge enormous figure, when I'm supposed to be down in the 3s' And it can't be cured.

Nicky knew she was overweight when she got the diagnosis but she felt so fit and healthy she didn...

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Age at interview: 46

Sex: Female

Age at diagnosis: 42

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So when they, when the nurse said well you've got diabetes, what did you feel?

Rubbish - of course I haven't. You know, I know diabetic people, you know, have got missing legs and you know, they can't walk properly and, all that kind of stuff, and that doesn't apply to me at all. And of course I eat this nice healthy low fat diet, you know, hey, of course I haven't got diabetes. Don't be stupid. And, in fact, it wasn't until the doctor had taken an A1c test, to confirm, that you know, I believed it at all.

So what was your weight like at that point. You said you'd been?

Weight was high. I'd gone up to about 115 kilos, just after the birth of my daughter (and don't ask me what that is in stones, I'm sorry I don't think in those terms). And I'd got that down to about 105 kilos at that time. That was a BMI of 33ish. But you know hey, I was eating healthily. I was reasonably active. We went for walks every weekend. Holidays were, and still are, (assuming a husband with a good back), mountain-walking type holidays, and couldn't possibly be diabetes. Ridiculous.

The other, the other part alongside the disbelief, was complete denial, because one of the first things my darling GP said to me was, 'This is going to knock 15 years off your life.' Gee thanks, doc, you know, sod off!

And the other thing is that I had these two young kids. I think they were about 8 and 10, maybe 8 and 11, at the time. You know, it was inconceivable to me that I was having a degenerative disease that was just going to tail off until, poof, there wasn't going to be anything there. So, no, that was definite denial.

Also what he told me to do was to lose weight. Well, you know, like every other damn woman in Britain, I'd been trying that for some years without any success. And to take up squash. Squash was going to sort my obesity problems. Okay, right!. You know' [laughs] bloody ridiculous. So my first reaction to anything is to go and learn about it so I. Oh and 'don't look on the internet because the internet is full of rubbish'. So, went on the internet, as you do, you know, [laughs].

Others had received the diagnosis when they were getting treatment for other health conditions or at a time in their lives when they seemed to have other more immediate problems to cope with.

Gugu was in hospital for fertility treatment when her diabetes was discovered and at first she...

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Age at interview: 43

Sex: Female

Age at diagnosis: 33

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I can't remember being told much about it, I was just told that, 'Okay, you're, you know.' They sort of went on to the medical jargon, you know, and telling me about the sort of like, the, the physics behind it all, or the biology behind it all and your pancreas - and I just didn't have a clue what they were talking about.

I just wanted, all I heard was well you've got this thing and it was just because, it was irritating me at that time because it's stopped me doing what I'd initially gone to the hospital for. So I was just irritated more than anything else, and I mean I don't think I really got, at that time, that much information. You know, it was more, like I said it was more like the biological reasons why one would have diabetes, but it wasn't, yeah'which I just think I needed someone to sit down and explain the impact that it could have on your life if left, one, untreated. Secondly, neglect, you know, neglect of your, you know, your eating habits and things like that, yeah.

Because I thought, 'Oh, what now?' You know, I, yeah it's just another sort of blow that I didn't really take it seriously because it didn't mean anything, do you know what I mean? I was irritated because I just didn't know what, oh God, just something else to deal with that, or will be gone in a couple of weeks' time, you know.

For some, diabetes didn't seem that big a deal until they were confronted with physical proof that the condition was affecting them, for instance the loss of eyesight or physical strength were the kind of signs people said had triggered a change of attitude.

Pamela recalls how casual she was about her diabetes until she discovered that it was affecting...

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Age at interview: 54

Sex: Female

Age at diagnosis: 50

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Okay, I'll start what I think of as the, the very beginning. It was four years ago that I was diagnosed. I'd just met my 50th year and I'd completed an Open University degree and my daughter had finished college and I was just thinking, 'Great, I can start, you know, I can start the new decade. Okay.' And during the, just before my birthday I was beginning to feel very, very thirsty. And my father was diabetic. In the back of my mind I thought, 'Oh, no, I'm, I'm diabetic.' And I, refused to do it, to believe it until my thirst became overwhelming. I would have a pint of water at least before I left in the morning, and an hour and a bit later when I got off the train at Marylebone I'd have to have a, at least two Cokes. I was craving for Coke to, just to assuage the thirst to get me to the office, where I'd be, drink again. And I went to my doctor's.

I have high blood pressure. Anyway, and I went to my doctor. And as I was leaving the appointment, I said, 'Oh, by the way, I seem to be very thirsty. Do you think there, do you think there might be a problem? You know, should I have a test?' And he said, 'You might be diabetic. You know, how long has this been going on?' etc, etc. Anyway I had the test, and I got a phone call from the, from the nurse saying, 'Would I please go immediately because it was, it was high.' It was something, I think it was 19. It wasn't, I mean I didn't think it was sort of like outrageously high. I've heard of people being much higher. So I thought, 'Oh, well, it's, okay. It's not a bad diabetes' knowing really nothing about it.

Anyway I had got it into my head that I really didn't want to be diabetic. I didn't want to have a chronic illness. You know, discovering that I could get my medications free didn't really highlight for me just how, how serious a condition it is. So I went on for several years just, you know, thinking, 'Oh, well, one day, one day I'll take it seriously, one day I'll take it seriously.' And it took me actually three and a half years to take it seriously. And there were two things really that, prompted me. Are you all right with that? [noise outside] that prompted me to take it seriously. One was I was beginning to get very painful feet.

And the other was I went for a retinal screening, I think it's called retinal screening, for my eye. And the den-, the, the optician said, 'Oh, I can see you've got diabetes. You've got a small aneurysm.' And my heart just stopped. It actually, I thought, 'Oh, my goodness. You know, it's going to rupture. I'm going to go blind.' So he reassured me that it was very small and, but they'd have to keep an eye on my eyes just to make sure that it wasn't. So I came out of the, I came out of the optician's determined that I was going to change my lifestyle.

I'd been very, it was very silly really, because I kept making excuses. I was working in London, and I ate a lot of processed food. I ate a lot of prepared food or I, you know, I don't often get on the train until half past six, seven o'clock at night, and I was starving. And I'd have, I'd have a baguette or, or something. I'd always have, and I'd have some chocolate. And I did find that actually, just before I was diagnosed, I could eat three or four bars of chocolate in one go. I just felt the need to eat that kind of sweet thing. So it was, it was... My lifestyle did not lend itself to being diabetic.

Wasim realised how serious diabetes was when he was still in hospital and felt too weak to lift...

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Age at interview: 29

Sex: Male

Age at diagnosis: 28

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So, you know, I could hear them talking and I'm saying, 'What's the matter?'. Well it's supposed to be between 4 and 7. So I said, and they said, that what's puzzling them is that after 60, apparently, 'You're supposed to be in a coma, but I think it's because you're quite a built, stocky lad that you've managed to keep on going for this long'. So straight onto insulin, potassium and saline drips, you know, a mixture of them, and I was in hospital, basically, for a period, a full period of a week. And' It would have been longer if it hadn't been for the fact that I took ownership of how they were help, teaching me to take the injections, you know, use different sites and trying to basically, get myself fixed and back out. Because I was conscious I was still in a trading period - I think I was just conscious about getting back to work.

I suppose it didn't really hit home until the first night when my son came up to the hospital that I'm in, and I couldn't even pick him up because I was that drained. I couldn't literally lift anything. I don't like showing emotion but at that point it was, it was pretty gut-wrenching and' I, felt like if I've got to do it, I've got to do it at least for my son. You know I've got to be quiet not selfish this time so, that's how I found out basically it was first time ever.

Some said they were unsurprised by the diagnosis because they knew that their lifestyle had put their health at risk. Several suspected they might have had diabetes for years before being diagnosed.

Duncan thinks he may have had diabetes for years before being diagnosed because he was overweight...

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Age at interview: 63

Sex: Male

Age at diagnosis: 61

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I wasn't all that surprised by the diabetes certainly, or by the high blood pressure I suppose because I was doing, I mean I am probably about as overweight now, as I was then. And I drank far too much. So I, and I knew the symptoms, I had seen them on the back of buses, on advertising shows, you know, sort of tired, going to the loo, etc. And I didn't think any of them were so bad that I had actually gone to my GP. But I hadn't been to my GP for about eight years. So I could have had diabetes for eight years before it was diagnosed. But I didn't get the lethargy particularly, I was still capable of doing sort of fifteen hour days, so I wasn't really aware of it. But as I say when they told me I wasn't surprised. If that makes sense?

Many people who had, at first, felt overwhelmed by the diagnosis were reassured by the support and information offered by specialist nurses, pharmacists or support groups (see Looking for information and support).

Last reviewed March 2016.

Last updated September 2010.