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 totally agree. Im an NHS podiatrist and I've seen some appalling rudeness from medical staff in general to diabetics and jobs being lost because there is zero flexibility for their appointments.

My husband is diabetic. Every time he goes into hospital for anything else, someone looks at the food supplement he takes on dietitian's advice and says "Well, that'll push his BM up."
Well, no it won't because it's low carb (maybe read the label) and, even if it did, he's been managing his insulin quite competently for over 30 years.
And then they'll try to change his insulin regime

There's a tendency I think for people to presume all diabetes is self-inflicted when, in reality, none of it is. You cannot "give" yourself diabetes and I wish this harmful stereotype would get in the bin whee it belongs.

For years, DH has had various medical problems written off as "that's down to your diabetes" when really it's been down to other things but as soon as medical staff see 'diabetes' on the file they just presume that's the cause for everything.

OP, I could've written your post.

Diagnosed, aged 4, in 1970.

Not just me then - having to explain I am Type 1 not type 2 etc to justify myself is really irritating me as apparently I am too old to be Type 1 anymore!!

I started putting on weight and feeling very tired during covid which was put down for 18 months as me being a fat diabetic - actually it was my thyroid packing up. Has taken me 18 months to shift half of it which would not have gone on if I had been treated iike a human being as well. No it was not my diabetes but part of the autoimmune spectrum that is type 1DM.

I'm not sure of the role of the public in treating diabetics badly.

Sorry - non medical people react when yu check your CGM, adjust your pumo, inject your dose of insuling discreetly - you should hear some comments.

most epoples first thought when they hear the word diabetic - is overweight, eats too much own fault!

Leeds2 - May 1970 it is a long journey!

You're very judgemental about type 2
I used to work with a lovely man, slim, keen golfer, healthy diet. He developed type 2, it was hard to manage and he really struggled. Not his fault any more than your type 1 is your fault.

I have a type of genetic diabetes called mody and i would say 90% of type 2s are self inflicted through diet....

Not judgemental but it is a very differrent disease to Type 1 - easier to manage, more options and most research done into it because it mkes bog Pharma loads of monies.
The fe Type 1 diabetics thev had no new treatments since 1921 when Banting and Best discovered insulin. Different modifications and methods of delivery but all still requiring injections.

GLPs have shown quite clearly the link between food consumption and type 2 control - something which is not the case for type 1 diabetics. Not judging but the diseases are very very different -

You can say what you want, it doesn't make it true. While some people do get it via diet, it's very prevalent in rice eating cultures and it isn't always possible to prevent it. In those cultures it adds to early death rates.

I live in the type 2 diabetes capital of the world and nearly all of it here is caused by coca cola

@lookluv for people who gave a strong genetic preposition to type 2, it isn't always possible to avoid it. I know of a family who has the genetic link and oddly the ones who really manage their diet and activity levels have had it since young and those that don't have not got it until their 60's.

YANBU at all. It is like going through life balancing a plate on your head. Incredibly difficult, incredibly emotionally, physically and psychologically demanding, and the plate is just going to fall off from time to time, no matter how hard you try. It just is.

I really think the general public have no idea about the type 1/type 2 distinction or the millions of things that can affect blood sugar - people generally seem to think it just means you need to avoid chocolate or similar. People would have much more sympathy if they understood how all-encompassing it is.

Diagnosed in my early 20s, 11 years ago now.

What I find frustrating is that everyone around you thinks a hypo, or any kind of complication, is a ‘sign you’re not managing your diabetes properly’ when it’s a fucking progressive illness and no matter how well you manage it, the slope only goes one way and that is down. It’s just how quickly it goes down. But down it goes.

I failed my last couple of eye screenings (normal after 10+ years I’m told) and my family were horrified. Had I just given up trying to control it? Why am I not doing as well as I was 6 months in? Is it because I had a bar of chocolate last time they saw me?

Honestly, fuck this awful disease. We desperately need a cure. The first 8 or 9 years were ok but I really feel it ‘progressing’ the last year or two. The hypos are harder to fix, and leave me feeling more tired. The highs are more stubborn and leave me feeling more ill. The numbers are more unpredictable and I find myself increasingly short tempered and snappy about everything.

When I was diagnosed I had a number of weird symptoms which I had consulted Dr Google about (oral infections, a skin infection, weight loss, lots of opportunistic illnesses) and one of the ‘suggestions’ was HIV. I remember at the time being relieved it wasn’t HIV but honestly now I would swap. The idea of just taking a couple of pills in the morning then getting on with my life just sounds like luxury. Which is awful as I know HIV is probably a huge shock for people who have it. But I compare my illness to others and get this hideous jealousy feeling.

DH is type 1, few eye issues after 50 plus years oddly. Comments about lack of control and causing it himslef have worsened as he's got older. He now when its mentioned by any HCP states I've lived with it 50 years since i was 2, I hate auto immune disease. Normally shuts them up. Best was the recent urgent call from his Gp to go in. He had to tell him recent bloods had shown diabetes. The Gp's face when he pulled out his pump and CGM was.apparently a picture. He then politley suggested they read medical records before calling patients in

In my experience ignorance and judgement around ALL chronic disease is widespread amongst both the general public and medics.
It is hugely exhausting and maddening.
You would expect more from health staff but they can be the worst offenders when they assume the person in front of them has no understanding of their own disease or must be exaggerating/ lying about symptoms, management or pain levels.

My friend is a diabetes nurse and type one since 7 years old, she says 80% of cases in a&e and referrals due to complications are self inflicted. They do not know you, they have certain things that they must say

Makes me so sad to read this. My 6 year old dc has T1D and I dread this for them as they get older and take more responsibility for their care. The lack of knowledge around T1D is absolutely shocking - i know many highly educated people who just don't have a clue. And while I try my damndest to correct the misinformation, I am also exhausted with explaining things all the time and I'm not even the one with diabetes! Sending a hug OP, it's a relentless, exhausting chronic illness and the resilience and grit shown by Type 1s every single day blows my mind. Sorry people are being so crap, especially those who should know better.

@SE20schools yes! My 10 year old is also type 1.

There is so much ignorance surrounding it. My child has been asked if they got T1 because they ate too many sweets or was it because of his diet. It’s fucking infuriating and insulting.

T1D is an auto immune disease where your body destroys the cells that make insulin in the pancreas. That’s it. Anyone can develop it. I wish it wasn’t part of our lives and I’m constantly worried about DS’s future.

Most cases of type 2 are diet and lifestyle related though.

They absolutely do not need to tell a type 1 that they are in hospital as a result of poor control. Health professionals should know that type 1 is a complex condition and that with the best will in the world, sometimes shit happens. Compassion and kindness are part of the job. So is knowledge of the conditions you are treating.

This is so understandable, and huge empathy to you.