Diabetics are treated badly by the public and healthcare staff

[lookluv]

I have been a type 1. since the age of 3 that is 50+ yrs.

I am now in my mid fifties and have a few complications which is hardly surprising - no one is perfect. This week I have had full frontal utter rudenss from nursing staff about my diabetes.

I ended up in ED for the first time in my life with a diabetic issue which I think is pretty good going. I was told, Did I realise my problem was self inflicted and if I ahd kept better control then this would not have happened.
I spoken to like an idiot, patronised and listened to someone talk toa student infront of me as if I was an inconvenience. she said - "what you ahve to remember is most diabetics do not get it is their fault and they just do not do what they are told.

I got asked if I knew how to test my blood sugar?
Did I know what a CGM is?
How bad was my control? - not how good my HbA1c is, which is 6.5 ish usually

In the end I lost it - pointed out that at the age of 3 I did not choose to become a diabetic and not all of us were self inflicted and they should think before they opened their judgemental mouths.

No I did not have good control as a child and teenager because we used to test our sugar by taking 5 drops of piss and 10 drops of water and dropping a tablet in to see what volour it went. I remember blood testing coming in where you matched the blue and green colour on a bottle. I remember when very expensive machines came in and gave you a reading in about 6 mins on a good day.

I do know my mother was given 2 glass syringes and 6 stainless steel needles and told her that was her lot for me and to boil them to make them sterile.

Sorry rant over - I have had a gutfull of judgement this week.

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I was recently rejected for a pump, and the despair this has sent me into has made me almost suicidal. If I didn’t have my kids I would be in a very different place with all this mentally. I have to live on, but the bleakness I feel at living with this until I’m dead is hard to describe. It’s just despair. It’s every second of every day.

Most cancers are diet and lifestyle related, people pick and choose what health conditions they judge. My DP has a stoma, he now has no way of avoiding diabetes. We went to a health open day type thing and cyclists were filling the diabetic clinics post Covid. As do other people involved in sport who use carbs to bulk and for energy.

OP I completely agree with you. My mother was diagnosed Type 1 in 1948 and both my sons are Type 1. Rudeness and lack of knowledge from so called medical staff enrage me.

I think you are judging people who are type 2 like me. Mine is steroid induced diabetes as I was given steroids to control a bowel condition
Not lifestyle or laziness. The doctor didnt warn me I could get diabetes by taking steroids or I would have never taken them and would have put up with my condition and thefe are lots of type 2 diabetics because of medication.

Unfortunately, I would say that the truth applies for any department…nurses can be amazing or horrible. Doesn’t look like there is any middle nurse woman.

My son (24) is T1. He was diagnosed at 15 after developing DKA and falling into a coma. We had no clue at all.

he spent a week in hospital and since then has been pretty much left to his own devices. I know that he doesn’t carb count and doesn’t really look after himself but he’s an adult now and I can’t do much about it, but the diabetes team at the drs and hospital are useless.
when he didn’t comply they just discharged him! As if it’s going to go away or something. Instead of trying to educate him they just wiped their hands.

What the hell do Muller do to their yoghurts that make them so very very awful? Worst sugar reading I ever got when I had GD 12 yrs ago was one of their yoghurts. Other low fat yoghurts were still not great but no where near as bad.

GLP-1 medications don’t just stop you eating as much food, they specifically work to increase insulin production, increase sensitivity to insulin and reduce the amount of glucose produced by your liver. That’s why they help T2 diabetics with blood sugar control.

I was on fast acting and slow release insulin and full daily dose of Metformin last year. I was also low carb and had no way to reduce carb intake anymore that I already had because I was only eating carbs in green veg had even given up fruit, but my readings were crap. I went on Mounjaro and within 6 weeks I had dropped the insulin, 6 weeks after that I was able to stop the metformin. I went from HbA1C of 11% to 5.2% in a year.

How GLP-1 Medications Work GLP-1 receptor agonists (e.g., semaglutide, liraglutide, dulaglutide): • Mimic natural GLP-1 to enhance glucose-dependent insulin release. • Trigger the pancreas to produce insulin only when blood sugar is elevated, reducing hypoglycaemia risk. • Lower post-meal glucose spikes by slowing digestion. • Reduce appetite, indirectly supporting weight loss.

Impact on Insulin Levels
• Dynamic response: GLP-1 drugs do not add insulin externally; they stimulate your own pancreas to release insulin when needed.
• Glucose-dependent mechanism: Insulin secretion occurs only above a certain glucose threshold (around 70 mg/dL), unlike injected insulin which works regardless of glucose level.
• Combination therapy: In some cases, GLP-1 drugs are combined with insulin to reduce overall insulin dose and improve HbA1c, while mitigating insulin-related weight gain.

It sounds as though the nurse doesn’t know the difference between a type 1 diabetic and a type 2 diabetic. The management of them is not the same at all . She was obviously speaking to you as if your diabetes was caused by lifestyle choices . I’m glad you put her straight .

First of all, lookluv, can I say "well done" for getting this far as a Type 1 Diabetic. (Have you applied for a Alan Nabarro medal (50 years survival))? My husband (69) has been a Type 1 since he was 13 in 1970 - 5 years before we met). He got his Nabarro medal after reaching 50 years during lockdown. His experiences of early controls for the condition are the same as yours -glass syringes kept in surgical spirit, needles as big as lances, urine/water caustic soda tablets sugar tests but things have progressed nicely since through quick blood sugar finger pricks and ultimately CGMs to much smaller needles and insulin pens with better insulin varieties etc. Up until a few years ago his diabetes care was carried out at various hospitals in the various places we have lived under the guidance of specialist endocrinologists many of whom were of Professor status. But since then the care has been outsourced to the local GP surgeries and even those with diabetes specialist GPs have delegated the job of diabetes care to non trained and unconcerned school-leavers who see the job as a tick-box exercise. After each review he comes home with several bruises because they are hopeless at taking blood but wont involve the treatment room nurses. He complains that when he walks into the cupboard they assume he's a Type 2 diabetic because he's old and overweight and ask him how long he's been Type 2 because they don't refer to his notes. They give him advice on how to give up smoking even though he;s not smoked for 25 years - over half his life ago and tell him to up his insulin a couple of units without checking his HbA1c. Last time he went the teenager told him all his results were fine but when he said "Even my HbA1c?" she looked at her screen and said "Oh that's very high but it's the only one". He despairs at being called in because it's just a tick-box exercise by which the surgery gets a lot of its funding. He's always worked and gone all over the world to support us and our children -India, Australia,Spain and several places in the USA and we both feel he'd be better off back under the care of a proper hospital but they won't refer him saying "they can't do anything we can't do". But like you, lookluv, he's still going so you must be doing something right. "Well done" again.

Yabu for feeling the need to perpetuate stereotypes about type 2 diabetes when there is a significant genetic link and it is not always self inflicted

Exactly, I know so many people who developed T2 diabetes after being on a heavy dose of steroids (because it's a common treatment for my condition).

It's also common knowledge that there are lots of genetic risk factors

And it's a big over simplification anyway to just refer to T1 and T2 diabetes - see attached screenshot

Lots of people get T2 when they are treated with steroids for other conditions, so it is grotesquely unfair to just imply it is a lifestyle disease

I also know a couple of super healthy people who have developed T2 -.just genetics/random bad luck I guess.

I've had similar. Went to the GP about something random and mentioned an aching knee. Apparently it was because I was overweight and prediabetic and if only I could lose a couple of stone my knee would get better. Er no, it won't. Nothing is going to make my snapped knee ligament grow back. The one damaged in a horseriding accident years ago and which has caused me knee issues ever since. Cue some checking of my records. Ah. GP still didn't apologise though.

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?

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

Thank you all for your comments. It has proven my point on the ignorance of so many to all types of diabetes. Not everyone who gets the variants of type 2 are lifestyle related but a huge number are - as evidenced by the ability of some, not all to "reverse! their diabetes by diet and lifestyle choices.

For those of us not able to do that MODY, Type 1 there is a certain frustration at seeing all the research and news being about type 2 and seeing very few advances to reverse our conditions.

Until I hit mid 30s, I had never really noticed much rudeness as I was seen as a type 1, childhood by medical professionals diabetic nurses etc. With the good explosion on awareness of pre diabetes and lifestyle choices people can make, there is no doubt now that I am older I am lumped in the category of " type 2 variants" and that it is my fault. For context I am 6ft 2, with a dead thyroid I topped 14stone, now with thyroid in check and a will to exercise the weight is coming off.
What is clear from this is the number of people who do not understand how much harder the daily sugar dance is if you are Type 1 compared to many other forms. We have no background slightly functioning beta cells, they are dead and it is part of an automimune spectrum that affects other parts of our bodies that the type 2 variants do not. For those of us who can not remember a life without injections, testing urine, finger prick blood tests, not eating what everyone else can, going for a walk and crashing, going for a walk and going high -the concept that taking one injection per week will reverse my condition or modifying
my diet is alien - we do not get a spectrum of solutions.
Please tell me the last new treatment that was brought on the market for type 1 diabetes - injecting, pumping insulin is crude and inefficient because we do not deliver the insulin to the place it needs to be - our portal blood system, yet big pharma perpetuates this model as it makes monies. How is it we can transplant hearts kidneys, faces, livers, lungs - yet a few functioning islet cells bar a few small places does not make it into main stream diabetic treatment?

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.

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.

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.

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.

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.

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.

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.

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.