Explaining type 1

[jackois]

I just think back to how ignorant I was before being diagnosed... I know lots about type 1 and 2 now, though!

 

[spendercat]

A fast explanation would be that Type 1s usually have less than 10% pancreas functionality, and Type 2s less than 40% pancreas functionality.
Type 1s are usually treated with injected insulin, Type 2s usually are treated with oral drugs, although sometimes with insulin, both have to very carefully control their diets.
Both are serious illnesses with similar consequences if uncontrolled. Type 1 is obviously more severe. Neither are self inflicted, actually. About 20% of all diabetics are slim when diagnosed, compared to 40% of the normal population.
Of course, its simplistic and doesn't do anything towards explaining just how hard it is to change every part of your life to fit around the illness, but why give them information they don't want or need?

 

[letmein]

It's hard to ignore when it repeatedly comes from the GPs surgery. Routine fasting HBA1 scheduled for 12.30 but with all the flu jabs the nurses have to do that's the only time they can fit me in. No diabetic clinic at the hospital so despair.

 

[tom58]

If I have to stay in hospital for a reason not related to diabetes they always want to feed me a dire 'diabetic' diet. Please let me eat normally and I'll manage my blood sugar.

 

[lins100]

Noone understands it unless you have type 1 yourself. I always get asked by people is it in your family? NO! I have a cousin with it BUT he was adopted so NOT a blood relation. This annoys me that ppl assume. Were you born with it? NO! You norm get it during childhood some much later.

There is no factual explanation as to what causes it or why I got it. Yes no one can account for the cause nor can they find a cure yet it's costing the NHS serious amounts of money as it's one of the most costly diseases to treat.

There are two different distinct types ppl please can you swot up on the condition before you generalise diabetes. Lots are being diagnosed as type 2 these days so ppl tend to generalise diabetes according to this. Really type 2 should be given a different name and should not be associated with diabetes or we should be given a different name to make us distinct.

So I have a hypo....ppl think I'm not looking after my sugars properly. My sugar is high....I'm being neglectful....because I'm not the text book range of 4 - 7 all the time. What diabetic with type 1 is?

My last visit to hospital didn't cater for a diabetic with type 1 on an insulin to carb diet. They had no hypo treatment. I spent 1 week in a maternity unit with hypos every day erratic sugars as the food they had did not cater for a diabetic with type 1. The snack wagon they had only catered for type 2 diabetics who need to watch sugar. I was disappointed with the NHS there and then. I relied on my family to bring in lucozade and food.

 

[neilrow]

Anyone else find there is a complete lack of understanding about type 1 diabetes ? No one understands what it's like to live with and everyone thinks it's something you've bought on yourself and confuses it with the diabetes there mom, dad and uncle have got ! Bloody frustrating !

I have been diabetic type 1 for 32 years now and check my sugars several times a day. I still find people who don't understand but then that is common and I don't get angry but try to explain it in simple terms, especially insulin dependant type 1. Its been quite some while since I last had a serious hypo and carry a pack of dextrose tablets all the time. I have met people who are new to insulin and don't realise when a hypo comes. Its not the first time I have had to give tablets to a guy who is hypo and his wife was totally unaware of the situation. I do find that a diabetic is always ready to talk about their condition and we compare notes and advice.

 

[PG1759]

Hi Neilrow, I take my hat off to you managing all those years.... Having said that we don't get a choice do we. I always try and explain to people what it's all about and most people are happy enough to listen.

I think the frustrating part and probably what I meant in my post really, is that no-one truly knows what it is like to live with. The perception for most people is that you inject 4 times a day and that's that problem solved. We obviously no that there is a lot more to it...

 

[ferret1o3uk]

MY BIGGEST THING THAT ANNOYS ME I AM ALWAYS TOLD I AM OVERWEIGHT BY A DIABETIC NURSE WHO IS TEN TIMES MY SIZE , I EXERCISE WORK AND AM CURRENTLY TRAINING FOR A MARATHON . TO BE PUT THROUGH HELL WHEN YOU DRIVE , I HAVE BEEN DIABETIC 40 YEARS , DRIVING SINCE I WAS 17 NEVER HAD AN ACCIDENT BUT NOW GET TREATED LIKE DIRT BY THE DVLA RULES FROM EUROPE . AND YES JUST BECAUSE SOMEONE ELSE HAS DIABETES THEY WILL BE DIFFERENT FROM YOU BECAUSE THEY ARE NOT YOU. BOTH MYSELF AND MY SISTER ARE DIABETIC AND COMPLETELY DIFFERENT AND I WILL ALWAYS BE ME WITH MY DIABETES TAKE IT OR LEAVE IT XXXX

 

[azure]

Spendercat, with respect, I think your explanation may confuse people. Type 1 and Type 2 aren't about pancreatic functionality, and by comparing the functionality figures like that people listening may assume they're different stages of the same disease. In addition, FAR more people with Type 1 diabetes are slim on diagnosis because they'd have probably lost weight very quickly, even if they weren't slim to start with ( and I'd imagine most Type 1s probably are slim, or at least just as slim as any non-diabetic of a similar age.)

I have Type 1 and when people don't understand or say things that suggest they're getting muddled with Type 2' I usually say that Type 1 is an auto-immune disease where my body has turned on itself and destroyed the crucial insulin-producing cells in my pancreas. I sometimes add that it's not related to being overweight nor to eating the wrong things. I often give examples of other auto-immune diseases that no-one thinks are the fault of the people who get them. That helps a lot, I find.

Having said that, some people just won't be told. I had one woman who insisted I'd got diabetes because I was fat in the past (I've always had a BMI of 18.5 to 20) and when I'd patiently explained that it was an auto-immune disease, etc, she simply said "Well, you must have been fat once". And no, I didn't leave it. I was furious - furious that she'd ignored what I'd said. Smug people who stand their judging others because they 'know ' all about a disease because of a sentence they read in the gutter press, infuriate me. It's like the people who think they know about autism because they've seen Rain Man.

 

[pbp1955]

Folks,
we are lucky in the UK to get as much help as we do. Diabetes type 1 and type 2 are not obvious differences. Type 2 diabetes accounts for approximately 85 to 90 percent of all the diabetics so it is no wonder type 1 is less known about. I think it is positive when someone wants to know about diabetes so that they can understand what it is and the difference. That being said I simply explain it as:
Type 1 is where the pancreas no longer produces insulin and this is thought to be because of our own antibodies have damaged the pancreas. Type 2 is insulin resistance, that is the pancreas still produces insulin but the body becomes resistant to it. Type 2 is typically treated with a combination of diet and or tablets and or injecting additional insulin. You can get any type of diabetes at any age. Activity levels, food intake, illness and stress all impact upon the effectiveness of treatments which makes living and managing diabetes difficult to control.

Finally I can't stress how lucky we are in the UK - it would be easy for the rest of society to turn against you and I as to the cost of our condition to the National Health Service. We are ambassadors and should explain and inform others - after they are also paying for our treatment!

 

[ajaxcks]

Even after 24 years as a Type 1, my mother still thinks that a hypo is countered by having more insulin. Also, she provides unsuitable meals when we visit on the basis that if I ate "properly", then I would be healthier. My father said the other week that he does not understand diabetes (who does?), but it took him 24 years to admit it.

I would not want to suffer a hypo with only them around. Thank goodness I told my kids all about it from when they were old enough to understand so at least they (and my wife) know what to do.

 

[PG1759]

Even after 24 years as a Type 1, my mother still thinks that a hypo is countered by having more insulin. Also, she provides unsuitable meals when we visit on the basis that if I ate "properly", then I would be healthier. My father said the other week that he does not understand diabetes (who does?), but it took him 24 years to admit it.

I would not want to suffer a hypo with only them around. Thank goodness I told my kids all about it from when they were old enough to understand so at least they (and my wife) know what to do.

This is my exact point. You can attempt to educate people over and over and the majority of them just simply don't get it !

 

[AndyOD]

My advice in any situation play your diabetes down if you don't make an issue of and u r the only diabetic someone knows then by default they won't think twice when they meet another. On a number of occasions I've been asked to speak to other diabetics with control issues. Mainly 'cos it's something I have people know about but apart from that I don't let others bother about it.

 

[AndyOD]

Try to think of youself as an abasidor from the country diabeties

 

[AndyOD]

All that after just asking the wife to get me some chocolate LOL

 

[Flakey Bake]

I never have a problem explaining to people about diabetes, after all it takes so much time when first diagnosed that it becomes a hobby or a second job! What I do have problems explaining to people is the emotional drain it has on me. Most people think and say, well you can take insulin eat well and it will all be ok. They don't understand the constant checking, dosing, counting, screwing up and then feeling guilty because I ate that cake. It is every day, all day, all night.

 

[PaulinaB]

I'm most annoyed by people how think they know something, when they dont know a thing.
A person I know constantly tries to convince me that he "knows what it's like" because he's father/grandfather/someone had diabetes (im guessing t2). So I get comments like "i know what its like, your sugars constantly up and down, up and down...!" - that's basically the only thing he repeats all the time, obviously because he DOESN'T "know"!

 

[AndyOD]

I'm most annoyed by people how think they know something, when they dont know a thing.
A person I know constantly tries to convince me that he "knows what it's like" because he's father/grandfather/someone had diabetes (im guessing t2). So I get comments like "i know what its like, your sugars constantly up and down, up and down...!" - that's basically the only thing he repeats all the time, obviously because he DOESN'T "know"!

Must b annoying I would ask how do you know ? Maybe then it will stop.

 

[AlexMBrennan]

About 20% of all diabetics are slim when diagnosed, compared to 40% of the normal population.

Source or I call BS (It's probably true for t1s on diagnosis, but t1 is too rare for this to matter)

 

[Jean Mayall]

Regarding awareness. I was diagnosed with Type 2 at 34 ( I am nowb76) I weighed 10 and a half stone and was put on a diet after I hypoed on insulin (in hospital). When my weight reached 6 and a half stone I was given tablets, which eventually increased to 8 a day. I gradually gained weight up to 8 stone but was eating practically nothing at all and eventually pleaded with my Consultant to go on to insulin, and have never looked back. When I heard abut the Dafne Course I asked to go on it, but was refused "because I was a Type 2". However I nattered my GP until he finally agreed I had been wrongly diagnosed (and was upgraded to Type 1). I think my original dose of insulin was just too high to cope with what I had eaten and I should have been on a lower dose of insulin from the start. Anyway all's well that ends well. but with all the guesswork on insulin doses at the beginning this has probably accounted for the neuropathy and eye damage I now have. I think it should be compulsory for every Type 1 to go on a Dafne Course about 6 months after they have been diagnosed. so that any problems can be ironed out then and they know what they are doing. I have found out the hard way!!