Diabetics are treated badly by the public and healthcare staff

@thing47 so true on the many things.

The biggest one for me is the temperature/weather, but sure tell me I need to try harder to control it. I’d bloody love to have the ability to control the outside temperature!

Type 1 is Schrödinger’s Disability. Too disabled to be trusted to know your own capabilities, not disabled enough to get any support.

Sympathies, OP. I have type 1 and also developed underactive thyroid during covid. It was a long, long time before I could get treatment for it; I had to pay privately for a blood test, and it's been really hard to lose the weight I've put on since. I also have Crohn's, have the full suite of autoimmune nonsense

Yeah, its pretty poor. DH was told by a GP that at his age (mid 50s) his diabetes would be Type 2, not Type 1. He politely pointed out that might be true if he had just developed it, but he'd had it for 45+ years. Which was in his notes the GP was reading...

The misunderstandings around hypos and hypers being due to a lack of control.is tedious too. Things that can cause them:
Food (not just carbs)
Exercise
Alcohol
Stress
Housework
Driving
Sleep
Lack of sleep
Other illnesses
Life

When DD was pregnant she was given a target range of 4.3-5.8. With control that tight, you are inevitably going to tip into hypo fairly frequently but it is a sign of good control, not bad

Yanbu. The only people who get it are other type ones. It should be a rule that you cannot be a endocrinologist without being type one yourself. Im sick of the doctors judging when they dont live with it and dont have a clue.

I wholeheartedly agree with this. I’m only 34, diagnosed type 1 at the age of 6. No one is perfect.

I try my best always, hospital staff don’t always believe it, ‘try harder’, ‘you need to look after yourself better’… ok but you do realise that a common stomach bug will most likely have me in DKA within a couple of days (and that’s after following all the rules!)

I’ve got numerous complications already, internal nerve damage to my bowel, dumping syndrome / gastroparesis, retina damage etc, and actually don’t get me started on the MH and burnout side of it all, it’s never ending - literally, never get a break, never able to switch your mind off.

I have a pump and CGM now but I beep and alarm constantly, I sound like a bloody washing machine, I hate it but what choice do I have, single Mum with not very good hypo awareness (resulting in previous seizures)

Sorry I’m moaning now! Yes, it’s crap, it’s horrible, it’s awful how the public and media sometimes don’t understand the differences between the Types and can be incorrectly judgemental.

I don’t even know what my point was, but I agree with you. It’s shit, could always be worse, though!

I get you xx

Is it? My first thought is to wonder if it’s type 1 or 2 because the treatment is quite different.
Isn’t it true that the biggest cause of t2 is being overweight?

Exactly. I've got a medical condition that's very misunderstood and medical students are taught things that are out of date. A lot of people including myself with the condition all have a common symptom. Every doctor I've talked to tells me the two aren't related but can't tell me why I have this symptom.

One of the most bizarre and ignorant comments I once got (not related to the above) was to be told by ENT I can't be hearing impaired because I'm sight impaired. Audiology looked at my hearing tests and disagreed

I think this is a great analogy.

I worked in a school where we had a number of diabetics and a couple of them were struggling to control symptoms. Fortunately our school nurse (this was an independent school) was ex Diabetes UK and we got high quality staff training on it.

She told me once her previous job was ringing schools to help educate staff after desperate parents had called the helpline.

I think we could do with more education as a society on T1 diabetes and some of the other autoimmune conditions such as coeliac. Even people just understanding "autoimmune" would be a start.

HCP could at least read the NHS info pages!

I'm sorry you have to deal with that 💐 I have a different chronic illness, mine was triggered by a virus, but I've had similar attitudes with healthcare workers and others trying to find a way to blame me for it. It's cruel and ignorant.

To be clear, she'd not been drinking at all - doesn't drink as she finds it's bad for her sugars.

She just didn't respond how police wanted her to, due to being very ill, so gets arrested for it. It's happened more than once.

I've a family friend who has been arrested for drunk and disorderly several times while having dangerous blood sugar problems with her type 1 diabetes. (Travellers, so police won't listen.) Just stuck in a cell, to drift into a coma. Completely agree, OP.

You’re not unreasonable and I as a Type 2 was discussing this with a colleague who is Type 1 just the other day. There is a lot of misinformation about both types out there both in the public and medical spheres.

I feel for you all, I have an autoimmune condition and a lot of health care professionals can't even pronounce it, much less even know what it is despite it being the second most common one! A senior nurse asked me "Wassat!? I can't even pronounce that"? I read lots of research stuff & there are a few things being developed to stop or control Type 1, I think it's one of the positives of AI crunching through data that would otherwise take years to research.

I had no idea - that is terrible, particularly from healthcare staff.

This is so understandable, and huge empathy to you.

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.

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

@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.

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.

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

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.

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

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.

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.

@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.