How did you cope with the diagnosis?

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MarinaDE

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I was diagnosed with type 3c three weeks ago, and I'm surprised at how hard the diagnosis has hit me. I keep telling myself that diabetes is very well managed now, and it's just a matter of titrating doses etc etc, but I'm shattered at the thought of re-entering the medical system permanently, and I can't talk myself out of it. Especially since I've realised there's nerve damage that can't be reversed.

Maybe it's because this is clearly a sequel to the cancer I had more than a decade ago when half my pancreas was removed. I am annoyed that I was never warned that this was a likely outcome and that I should have had regular blood checks.

I've had some remote work issues this past couple of weeks, with one colleague extremely angry that I dropped the ball on a couple of things. I haven't gone into details about the medical crisis I had that got me diagnosed, but I gather work colleagues think "it's just diabetes" and what's the problem?

How did people here react and did you get any problems from people around you?
 
I think you or management need to correct any colleagues who are minimising your diabetes, especially as you previously had a cancer diagnosis. Nobody should be “extremely angry” because you’ve been unwell and are dealing with a new diagnosis and adapting to that life. Diabetes is covered as a disability.

Three weeks is very early days. I don’t remember how long it took me to get my head around things but I do remember it went in stages. The first few weeks were taken up with remembering injections, testing blood sugar, etc. Then the emotional side took much longer to deal with. I was angry and upset. This went on for a few months. That gradually receded as I got back to normal life and felt more Me. Give yourself time. Set landmarks, eg that you’ve reached one month, two months, etc, and as you reach them, think of how you felt initially and think of positive things you’ve achieved no matter how small. Be kind to yourself too.
 
How did i react? I overreacted at first, like gothic rending of garments overreacting. Quite florid. And why not! Go it out of my system in a short time, took a couple of weeks off work (any excuse) then got on with stuff.
No one else seemed bothered, tbh
 
At first i was Shocked, lost, worried, alone.

I decided to learn learn learn and then adopt a strategy for best outcomes if I could. Wrote an App to help me manage everything. Dumped the diabetes meds Asap [under supervision] as the evidence was that they were making things dangerously worse, sorted my diet, started (eventually) exercising, Checked and rechecked everything as the days, weeks, months went by. Readjusted my strategy, expectations constantly...took control where I could. Refused to be depressed or upset or defeated.

It wasn't helped by the fact that the hospital diagnosed me incorrectly as a type 1, gave me insulin and an injector pen and no information. However, that fired me up to sort things out for myself.

I was driven, focussed, and scared at the same time. I learned a lot and made a few mistakes (through misunderstandings and confusions).

So now I am classed as a type 2, much fitter, happier, healthier

I learned early on that the NHS doctors don't always get it right and the best person to look after me is me (with a little assistance from the doctors).

I also don't think I am diabetic at all and will discuss that at my next (pending) diabetic review...as long as the HbA1c comes back 'good'

My three year BG plot is below. Note the start at diagnosis when I got home after the hospital stay. All settked down when I came off the meds! Don't get me wrong my HbA1c at diagnosis was 150 !!! So at that moment in time I was deginately diabetic and had pretty much all of the symptoms. Sadly, evrn in the face of evifence to the contrary, the dianosis has not bern revoked, only chaged from type 1 to type 2.

The plot shows the BG results taken at fasting and at 2 hours after an afternoon snack of some sort, all various carbohydrate amounts.

BG August 2023 3 year plot.jpg
 
Morning Marina,
You have my heartfelt sympathy and like yourself was diagnosed exactly 3 weeks ago with Type 3c after a severe bout of pancreatitis about 18 months ago and a stay in hospital with a lot of exocrine necrosis.
After 6 months of slow recovery I had effectively got back to normal once I resumed my full diet with help of Creon which I found very easy to fit into regular routine.
Again like yourself I was not fully warned about the much heightened risk of diabetes and in fact was told because of the location of the endocrine cells in the Pancreas they may be less likely be be damaged in my particular case.
So equally it was a shock when I was told my hb1a level had gone from 40 to 100 from one test to the other and the inevitable diagnosis.
However every case is different not only in terms of specific cause and consequence but how as individuals we deal with any situation.
We mainly go through the normal process of shock,anger,finding out ways of better dealing with it and finally acceptance following diagnosis but we all take different times to work through the phases depending on several factor.
Personally I find once I know what I am dealing with I am usually then I can move on quite quickly but I do not underestimate that there will be good and bad days and many challenges in the journey ahead.
I do have great support with local healthcare and my employer is totally supportive of my situation and they are huge positives for me.
I also have an enquiring mind to want to learn as much as possible to find out how best to deal with this and live as best a live I can.
The input and support of others on here is so helpful in this quest and as others have said the condition is serious but manageable.
Any diagnosis of this type is very hard and will impact on their future lives and is a big shock from mine and your previous lives which is natural to “ mourn”.
I do feel for you so much and it is overwhelming to begin with but it will get better it just takes time and take one thing at a time.
Apologies for long response and do hope you find some solace from the undoubted support and encouragement that others will give you here and the vast array of info that you will. find on this site.
Sincere BW
 
Sorry to hear of the emotional impact of your diagnosis @MarinaDE

You can see from others’ experiences that it is not at all uncommon, and that a diagnosis with diabetes can bring about a form of grieving with all the torrent of emotional states that can involve.

It’s a shame that you are having to deal with work stresses on top of everything else. I suspect that it due to a misconception about the potential seriousness of diabetes by your colleague. I’m sure the reaction would have been different if you‘d been involved in a serious traffic accident, or received some other more visible physical injury.

Try not to be too distraught about any changes to nerves or sensations that you may experience. I’m not sure why some medics feel it is helpful to talk about irreversible changes so freely. I was told the same about background changes to my eyes the first time - but these have since cleared up, and I’m now “all clear”. Concentrate on effective diabetes management, and aim for reasonably steady levels as in-range as you can manage, and any changes should be slowed, and may even improve in time. The human body is an amazing thing.
 
Just to echo everyday comments about body being amazing and not to be underestimated and interested in peoples comments.
Since my diagnosis only weeks ago my eyesight has improved considerably and I mean from years ago and not just as a result of very high BG levels the last few weeks being reduced.
Fully understand the changes that happen with fluctuating BG levels but find it hard to explain why it should improve now and is much better than it was several years ago when I had no signs of diabetes whatsoever and regular eye tests which never revealed anything more than normal sight deterioration with age.
 
Gwynn said:
It wasn't helped by the fact that the hospital diagnosed me incorrectly as a type 1, gave me insulin and an injector pen and no information. However, that fired me up to sort things out for myself.
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Hi @Gwynn that's an amazing story. Can I ask, how the hospital came to diagnose you Type 1? From what I read, the misdiagnosis is usually the other way around! And what meds were you taking (apart from insulin) and what side effects did they have?

It sounds like you've dealt with this superbly.
 
Hi Marina,
Thanks for kind response and your reaction is perfectly normal so don‘t reproach yourself at all.
Remember small steps and small victories will help you take the positives and encourage progress so don’t overload the expectations and simply make the small changes and you will be rewarded.
Remember the old adage about how do you eat an elephant? One small but at a time.
I found it overwhelming when the DSN was explaining everything about the insulin therapy and all the new routine and meds etc and all done remotely.
Once I got into the routine of injecting myself and monitoring the BG I felt much happier and more in control.
It is easy to feel lost and not in control and that can cause anxiety but it does get better in terms of responding to the BG alarms etc and simply getting a better routine.
ATB
 
I think it’s such a hard issue to cope with as we all suffer so differently and if your type 3c then you have been through a lot, I think workplace resources are badly needed especially for colleagues and understanding how it affects us.
DUk has some great resources on diabetes distress and find being a member helps too and can access the helpline.
 
Wow you've been through so much already and are coping so well. Give yourself a little time on the diabetes. I am 3c too and have been getting great advice and comfort from this forum. Emotions do run high for me especially when I see other people suffering and crying is a perfectly normal response when you need to. You have survived cancer and will cope with diabetes. Ignore the person being a dick at work, some people just don't have your superpowers!
 
MarinaDE said:
Thanks everyone for your encouragement. I'm not even sure why I'm so rocked by this. It's a manageable disease that's a much better option than some others.
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It is a manageable disease, but it is totally understandable why you will be rocked by this change. There is no reason why you would not expect to have an emotional response. We definitely ‘get it’ on here.

There is a wealth of experience on here to tap into for practical tips about day to day management, as well as good place for a rant when needed.
 
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