Diabetics are treated badly by the public and healthcare staff

Oh boy you'd have loved (not) the things some people said when I had gestational diabetes OP! Most people were very nice but a few were rather not. I work in health care so pretty good at advocating for myself and knowing what is/isn't in guidelines for obstetrics care but had one dr who really didn't seem up to date with latest guidance regarding gestational diabetes. Insisted I'd need to be induced at 37 weeks. My gestational diabetes was exceptionally well controlled (purely because I was lucky and didn't suffer it too badly compared to some others, not because I was better or superior than anyone else). I did later on have a different consultant who was much more pragmatic and acknowledged that my diabetes was well under control and that inducing at 37 weeks was quite ridiculous. She was extremely supportive of my birth plans/wishes and did everything she could to make it possible, only suggesting small changes here and there to make it as safe as possible. Eg I wanted a VBAC and waterbirth, she said fab no problem, but I recommend you have the VBAC waterbirth in the delivery suite pool rather than the midwife led unit pool just incase anything goes wrong. I ended up having a fantastic textbook VBAC, spontaneous labour at 39+4 (induction was booked for 40+0). Went to hospital at 9am 3cm dilated, DD2 swiftly born at 11am with 15min pushing 😂 home the next morning, everyone happy! They didn't even have time to give a crap about my gestational diabetes during labour as DD2 arrived too fast for anyone to even bother checking my blood glucose lol

This isn’t just a diabetes problem it’s an endocrinology problem. GPs, nurses and other unqualified people seem to think they know better than endocrinology consultants. I have a thyroid condition & had to go private because of know it all dickheads like this.

I was diagnosed with Type 3c. As a result of immunotherapy causing my body to attack itself and partially destroy my pancreas. My diabetic follow up nurse admitted she knew nothing about it and I am the only person on my drs practice list to have it. Medical people keep trying to treat it as type 1 which is actually hugely different so getting treatment is really difficult unless I insist on seeing my endocrinologist. It’s almost impossible to control and has made my life an utter misery. It does now have it’s own classification on the nhs system but what good is that when 95% of professionals I made have no clue about it. It’s not self inflicted, weight and diet make no difference though I eat really well. High protein, loads of veg, beans, lentils, fruit. V little dairy as I’m lactose and gluten intolerant also as a result of my treatment, don’t drink, smoke or eat red meat yet I’m always made to feel it’s my fault and that I did something wrong to get this. All I did was get cancer. Not genetic not self induced, just bad bloody luck. I had a life threatening reaction to chemo and immunotherapy and it caused me a massive gastric haemorrhage and sepsis both which I’m told I should not have survived, ditto the cancer I beat the odds to the point my team say they cannot explain my survival. Yet I took it all, and beat the disease only to be struck with type 3c and even though they say it was 100% caused by the treatment every other medical professional makes me feel like shit as if it’s self caused and my fault. Everything I do/eat, every outing and day has to be planned meticulously as type 3c can drop me dangerously low in seconds. I could cope if I could expect even the most basic professional courtesy and u deranging of it. I wouldn’t choose this in a million years or wish it on my worst enemies.

I remember telling a friend - who went to medical school- that I developed type 1 diabetes at 41 while pregnant and she said ‘yes your diet is not great’! And a doctor - in my early days I asked him if I had a high reading should I take insulin then or wait til I was having a meal and he told me to wait!
Eating a balance whole food diet does help me with blood sugar levels and I seem to have beat the morning highs, but I’m surprised how even the so called experts get it wrong.

@lookluv I'm not sure.where you have care but I think having dawn is a clear indication for a pump. Are you seen by a specalit team or the gp. My dh's consultant 15 years ago took our local ccg to task for not funding one for my dh i belive he offerd to support me in taking.them to court if dh died due to his significant dawn. Dh was given a closed loop 4 years ago at 52 as he has sight loss secondry to his type 1 and other health issues which makes life a bit harder. The joys of 50 years of diabetes. As an HCP I can sy its often mis understood, and I often have to remind collegues type 1 is genetic not diet, and our type 2 patients normally have.it due to long term.steroid needs

@lookluv i forgot about that old hidden gem of T1 care. You are doing too well so you aren’t eligible for xyz. Like by trying you aren’t worthy of something that can help with the mental or physical load, whereas someone who doesn’t care gets technology thrown at them. Especially if they are young.(not everyone who struggles doesn’t care before anyone piles on, some are brittle, or short term going through treatments or hormonal changes, but if you don’t care it’s more likely you will fall into the sub-optimal HBA1C camp)

Nobody ever seems to think, oh that poor person has slaved away with syringes, peeing on a stick to test glucose, fixed meals (time and size) etc etc, maybe they deserve a break first.

With the closed loop system, are you sure it is not a post code lottery issue?
During my third pregnancy, I asked for a pump and they said no. I moved house during pregnancy and went to a different hospital.
One day while discussing diabetes I mentioned that I wake up 4am as normal to inject myself with novoRapid then go back to sleep. To prevent myself from going high as I suffered from bad Dawn phenomenon. The doctor eye opened and that is very dangerous. I said my other hospital doctor was aware and said it was fine. She started saying no that is dangerous and why were you not given a pump instead? I said the other hospital said I was not eligible. She said you here now and if you want I can get you an urgent referral to our pump clinic. I said I want it.
She warned me about the dangers and said they will test my ability to carb count and see how much I remember from my dafne course. Then they will give me one, which they did a week later.

Two very different experiences, with the same pregnancy. I asked for pump both before the pregnancy and during it, was told myriad of reasons why I wasn't eligible. Then from one conversation I got a pump.

No. I joined a forum as I was trying to find ideas on what to eat really and quite a few studies were published on there which I read, so my research really was quite accidental I suppose. I have my HBA1C done annually, then the eye thing every two years. Not sure if I should have any more input from the GP.

Was the research because they diagnosed you and then discharged you with little to no support?

The "you'll get diabetes if you eat too much junk food" is very prevalent in society, taken from superficial understanding of health messages.

Thanks.

Agree!

Women get this for being female. Autistic people get it for being autistic. Black women are treated worse in childbirth. People don't listen when I tell them about the effects of Hypermobility Syndrome Disorder.

I spot a trend. (At least your husband is male so that one helps ) It's shit.

I remember the glass syringes and filling it for my grandmother when I was under 10. She had an emergency chocolate bar in her bag.

It was shit. People forget how much technology has moved on.

Op, you are reminding of how I felt during my first trimester with ds1.

The weekly diabetetic clinic where I only went to be made to feel like a failure. I used to cry going home. Because how dare I go high after going low. And why am I testing my sugar so much? Are you sure you want this baby? Said by a diabetetic nurse.

Then one day, I saw a doctor who said you type 1? Well done! When he saw all the readings I had. I was so taken back I asked about his credentials and where he graduated from. Lol! I feel embarrassed thinking about it. He was so kind and professionally and his words made sense. He showed me his certificate (i told him to stop, i was not expecting anyone to recognise the effort I was putting on) and I apologies to him for my rudeness.

He apologised and said some staff like to use fear tactics to scare some mother into doing the right thing. I can see you are trying to do your best, he said. I was still not over the shock and asked if that is true why are the glucose reading not in range all the time. He said you have diabetes, this is expected and it this is why you come here. So we could advise you regularly on things you can do while pregnant because pregnancy hormones mess up blood glucose control. I said this feels so surreal. He asked why do you come here. I said I come here because I want what is best for baby and me. That means enduring being told all the risks.

The following week I saw a different doctor and she said the same thing. I couldn't stop the tears and I sobbed in her room. Both doctors gave me helpful advice on how to tweak my insulin and it worked. I felt relief after my appointment, instead of feeling like the worst human ever.

I seen wonderful diabetic nurses and diabetic midwifes. I speak with them more often. The ones that have type 1 experience are so much more different than those that don't. When talking about my own health/ life experiences.

That first doctor, when I heard he was retiring I cried. He wasn't my doctor then (retirement time), but he had such an impact on my life. He is no doubt the best doctor I have ever dealt with.

On another note, I have been type 1 diabetic for nearly 20 years. This year I was perscibed mounjaro to help deal with insulin sensitivity. Because I collected few more autoimmune illness over time (not by choice).

I was also perscibed closed loop insulin delivery system. Which is a game changer. If eligible, I would highly recommend it. I didn't use it for few days, as I developed skin irritation to the adhesive on the cgm, I went low at least twice a day. They sent over some adhesive to put on before the cgm, which means I can still use it. I hate low sugar.

Absolutely rubbish when the treatment you need for one condition causes another. Especially when people assume it’s your “own fault”. But you’re still in the minority, it still doesn’t alter the fact that being overweight or obese is the main modifiable risk factor in type 2 diabetes and is the main cause of the vast majority of cases of type 2 diabetes. The denial around this fact is a huge problem.

Lots of people with my autoimmune condition are treated with heavy doses of steroids and then develop T2 diabetes. Indeed it's listed as a key risk factor.when we "consent" to the treatment (no other options tbh at that point other than being dangerously ill). It's utterly grim that they then have to deal with being judged on top of everything else they deal with.

Type 1 isn’t self inflicted but Type 2 absolutely is. You can reverse T2 by changing your diet, but far too many people would rather take meds than stop eating stodge.

Healthcare professionals have a duty to tell people facts, that is not being judgemental. The same way they should tell people that smoking will likely kill them, they should tell people if their weight is causing them health issues.

I am not saying this is the case for you, there are always outliers and “difficult” type 2s that don’t fit into the box. But weight gain once people get their sugars under control is not unusual. Once the medications enable your body to use the glucose as it should, any excess (from eating too much of it) turns into fat rather than floating around in your blood, therefore dietary adjustments are needed.

Regular hypos are not just a crappy part and parcel of living with diabetes, they are dangerous and need tackling. If your GP doesn’t have the skills and knowledge to deal with this (which is not uncommon) then you should ask for a referral to your local diabetes specialist team at the hospital. You sound like you meet the criteria.

It is highly unlikely that with the proper knowledge and guidance from experts that you can’t lose weight without having problematic and regular hypos. It’s rubbish that everyone doesn’t just have access to this as a matter of course but that’s how it goes with a healthcare system with finite funds.

All this judgmental bullshit is tedious. I'm overweight and Type 2. However, I was thin until I started taking medications that are well known to cause weight gain. I get hypoglycaemic regularly, and dieting any more than I do is difficult. I don't binge eat. I eat less than I did when I was thin. I don't actually know what more I can do, and neither does my GP. He can't give me weight loss drugs because my blood sugar has a habit of dropping dramatically as it is unstable.

Any healthcare professional who doesn't know the difference between Type 1 and 2 should be sacked.

I agree that there can be a lot of stigma around diabetes and even healthcare workers often do not understand and that type 1 and type 2 are different conditions.

No one should be treated with a judgmental attitude by healthcare staff or anyone else but many people with type 2 diabetes can be incredibly difficult to deal with as there is a significant amount of denial in this group.

The vast majority of people with diabetes are type 2, type 1 make up a small proportion, under 10%.

Whether people want to hear this or not, the biggest single preventable cause of type 2 diabetes is weight, particularly carrying it around your middle. That is not to say that there are not other contributory factors, genetics, age, steroids etc.

Only 10% of people with type 2 diabetes have a healthy BMI.

Around 10% of the total NHS budget is spent on diabetes, around 10 billion. And much of it goes on treating totally preventable complications. The amount spent on smoking almost pales into insignificance at the side of this but you will not find any sympathy for smokers and their preventable complications! Indeed, many people are of the mind they shouldn’t even be entitled to NHS treatment.

I appreciate this post was originally about type 1 diabetes but many people brought up and drew comparisons between type 1 and type 2. They are different conditions, with different causes and mostly different treatments.

Type 1 can be hard to control, type 2 is an often preventable and usually controllable disease, in many cases simply with lifestyle adjustments. That’s not to say type 2 isn’t an awful condition to live with and a pain in the neck for the person suffering with it. And they should be treated with dignity and respect, but whilst also taking responsibility for their own health.

Totally understand your frustration, especially as the other day was Diabetes day.

I’m quite confused by your post - I have had a stoma for over 55 years and (to my knowledge) I’m not diabetic.
Can you explain why you are connecting the two please?