Does this happen to all Type 1's...?

[Rachette]

... Clearly it's not just me...!!

--- I've had all the above too I think; one friend is a nutritionist and asks me *everytime* I see her; 'tell me why they think you're type 1 again...?" -- and I say 'because my GAD antibodies, which is meant to be below 5, came back at 1,800 higher than my doctor had ever seen -- that's what makes it autoimmune' -- and she without fail goes on to say something along the lines of 'but you did like sweets though didn't you'... She may as well just say she thinks I'm type 2 and be done with it!!

... Quite seriously though I do find myself removing myself from social situations because I'm becoming so sensitive to the continued 'you just haven't tried hard enough to "beat this"' comments... :-/

I'm interested to read this as I have recently been told I'm T1 and when reading my consultants letter about my GAD result (?) being positive, I hadn't a clue what it was supposed to be? It's all very confusing medical terms (IA2 antibodies? What are they meant to be?) lots of research still to do ....

 

[Vics]

Last night I had *yet another* frustrating conversation about being diabetic....

Friend (who knows I'm type 1 from previous conversations): when do you get your insulin pump?

Me: 10 days time, should be great!

Friend: how long have you been diabetic?

Me: about two and a half years....

Friend: what caused it?

Me: they don't exactly know - other than it's auto-immune -- so something triggered an autoimmune response which caused my pancreas to conk out

Friend: oh, you're just like another friend I know -- she's diabetic too -- she got it because she went on this crazy health kick where all she ate was fruit -- and the spikes from the fruit caused her to become diabetic.... she's managed it just by cutting back on sugary things though.

Me: sounds like she's type 2?

Friend: yes

Me: I'm type 1

Friend: yea, exactly -- she's the same - but it's crazy cos she was actually trying to be healthy and that's how she got it...

{at this point I zone out -- thinking I don't know how to deal with the endless confusion....}

----

This sort of conversation happens to me *at least* once a week - does this happen more because I'm adult who got diagnosed....? Or does this sort of conversation happen to everyone with type 1?

I'm seriously considering wondering whether to lie to people and say I've always had it, cos it doesn't seem to matter how many different ways I explain that cutting out sugar isn't going to cure me, people just don't understand....

This happens to me all the time, I'm sure it's worse because you're diagnosed as an adult. I was 1.5yrs ago. It's such a shame people think they know about diabetes because they've heard about type 2. I get frustrated and feel I have to try to explain, I should probably just leave it, but it makes me so cross. I wish it had a different name

I completely understand, I guess we need to support each other and hope the education gets out there some day.

 

[misswhiplash]

D'you know what, though? Not everyone who has T2 is fat, either. Or had a bad diet/ate too many sweets. Or *looks* like they have diabetes. Or can control their blood glucose with diet.
And whilst there is known to be a correlation between obesity and T2 diabetes, correlation does NOT necessarily imply causation.
There are no good studies or evidence yet that back up the idea that obesity causes T2 diabetes and certainly no more out that than the alternative suggesting that insulin resistance causes obesity.
I'm afraid I really can't bring myself to get behind the idea that T1 and T2 diabetes should have different names - the effects of the two are very similar, and many T2s will eventually stop producing insulin which renders them substantially the same (albeit for different reasons). We should all stick together and support each other - we should ALL be trying to fight the stigma, rather than simply distancing ourselves...

 

[misswhiplash]

Oops - that was probably a bit rantier than I meant it to be

 

[Anaelena]

I believe before you speak about a subject , especially when you are about to give medical advice , you should at least know what you are about to speak about. So being ignorant is not an excuse . Sometimes it is okay to just say " hey , I have no idea the difference between the two and I don't care." Giving health advice to someone who lives with a chronic condition on a daily because you "heard" or "read" an article is irresponsible. I remember as a young one being told by adults there was a cure for my disease, that it was probably my parents fault for feeding me too much sugar and they would also talk about how their "relative" went blind and lost a foot from diabetes. It is not and was not fair . Many people just ignore these people but I won't . I will continue to put it in their faces as they do to me . It may sound harsh on my part but I would much rather they spew ignorance towards me than some poor child. After 36 years I think I can teach them a little something. ))))

 

[Moosepig]

Oops - that was probably a bit rantier than I meant it to be

no, i think it was bang on! I agree completely with you.

 

[Natalie1974]

A person in work was getting really annoying talking about my diabetes just like the rest of you, so to shut him up, I just casually mentioned that I'd read that it can be very contagious and that someone had caught diabetes from a diabetic sneezing in front of them. He never bothered me again after that

The 'like' button doesn't do this justice...we need a ROFL button

 

[Natalie1974]

In all seriousness...although some of these stories are very funny...I agree that it can be quite frustrating. Instead of mocking these people or taking offence these moments and occasions are an opportunity to educate people...for some it may be lost but for the majority I think they will take it on board and hopefully have a better understanding. Also...a little information is a dangerous thing...I know virtually nothing about a lot of other medical conditions but then my experience of diabetes has taught me to ask questions rather than advise or make assumptions based on an article in some random magazine...we need to learn from each other.

 

[Petyilieva]

...I kind of start getting annoyed by such missunderstanding, but I am 34 now and was diagnosed just a year ago with type 1, and I have to admit that I would have made the same stupid questions if I had ever known a type 1 diabetic... I belive the two type should simply not be called with the same name..

 

[Franki267]

I get this too! So frustrating!

When I was diagnosed in December I got so many comments, some of the most memorable:

• "Oh, you must have had a really bad diet when you were younger - did you have lots of sweets?"

• "How have you got diabetes when you're so active and not overweight, is it because you eat unhealthily?"

• "At least you can just take tablets to control it, it's not too serious and won't affect your life"

• "Oh no, it will be rubbish not being able to have any sugar any more" ... etc ... etc ....

One woman was convinced I had been mis-diagnosed because "only babies get type 1 and only fat people get type 2 ... so how can you have got diabetes?"

These were from intelligent people....in the end I just gave up. Don't think we can be too harsh though - although I wouldn't have been as silly as to make comments such as those above, I have to confess that my knowledge of diabetes was very little pre-diagnosis.

I hear these every single day too, i'm so glad it's not just me!! I've also had somebody training to be a nurse to tell me i shouldn't take insulin at breakfast time regardless of what i eat and in the middle of having a hypo told me i'd be fine to drive in a minute if i had some juice and i shouldn't be dramatic seriously?!

 

[Janine p]

I've been type 1 for 18 months and get this type of thing all the time. A nurse at the doctors argues with me every time I go in that I'm too old to have type 1 (35) and that only children get it. I find getting these types of comments really upsetting. And I too think the name should be changed

 

[ronialive]

I have been diabetic since I was 3 and am now 46. Over the years I have met many ignorant and rude people who have told me that I don't know how to look after myself.
I know have a chronic back condition and need surgery so as a result of this I have put on 4 stone in weight- I was also changed onto human insulin which makes me gain weight. Now people look at me and se that fat people get diabetes.
I always try to educate but get very angry when a medical professional shows ignorance. When I was having my second chid I was in the hospital and had a blood sugar of o.8. The midwife told me I was making myself il as I had some chocolates. That I was irresponsible for having a tub of chocolates by my bed for my son when he visited. Apparently at 0.8 I needed a wholemeal bread sandwich and I was making myself ill.
I believe that if someone knows nothing there are excuses but if a midwife works on a specialist ward for people with extra medical problems, then they should know better. However being told I should not eat tomato ketchup or that I could not be diabetic as they never saw me inject. So I started to inject in front of them and that was disgusting and I was making a scene- some people you just cant win However- some people are no longer in my life either- dot let it upset you- there are more important things in life.

 

[Anaelena]

http://www.diabetes.co.uk/forum/index.php?threads/Type-1-diabetes-rant-:).77912/. It is interesting to me how offensive this is to people.

 

[islelassie]

Last night I had *yet another* frustrating conversation about being diabetic....

Friend (who knows I'm type 1 from previous conversations): when do you get your insulin pump?

Me: 10 days time, should be great!

Friend: how long have you been diabetic?

Me: about two and a half years....

Friend: what caused it?

Me: they don't exactly know - other than it's auto-immune -- so something triggered an autoimmune response which caused my pancreas to conk out

Friend: oh, you're just like another friend I know -- she's diabetic too -- she got it because she went on this crazy health kick where all she ate was fruit -- and the spikes from the fruit caused her to become diabetic.... she's managed it just by cutting back on sugary things though.

Me: sounds like she's type 2?

Friend: yes

Me: I'm type 1

Friend: yea, exactly -- she's the same - but it's crazy cos she was actually trying to be healthy and that's how she got it...

{at this point I zone out -- thinking I don't know how to deal with the endless confusion....}

----

This sort of conversation happens to me *at least* once a week - does this happen more because I'm adult who got diagnosed....? Or does this sort of conversation happen to everyone with type 1?

I'm seriously considering wondering whether to lie to people and say I've always had it, cos it doesn't seem to matter how many different ways I explain that cutting out sugar isn't going to cure me, people just don't understand....

I can understand your frustration but underlying this is the assumption that everyone with type 2 diabetes might have caused it through unwise dietary choices. This isn't true so why don't we stop saying type1 an type 2 and give different names altogether?

 

[jaywak]

I've even had someone say to me it's not a very serious problem cos they have heared some people have had it for ages and not even realised so we are just causing a fuss taking medication we don't really need.

 

[jaywak]

When my wife said to my aunt that she didn't do much cake baking because John can't eat them anyway she pulled a face and said NAAAAAH i've seen gluten free flour in the supermarket he can have that, Perhaps this is why high blood pressure and diabetes go hand in hand!

 

[JRW]

I was diagnosed T1 2.5 yrs ago, aged 38, it's been a good while since I tried to explain anything to anyone. I generally find people respectful though, other than the "can you eat that?" comment which really gets my goat.

 

[Eldorado]

I've even had someone say to me it's not a very serious problem cos they have heared some people have had it for ages and not even realised so we are just causing a fuss taking medication we don't really need.

We are just sooooo selfish. Lol!

 

[Celsus]

Even medical professionals specialising in Diabetes Mellitus knows typically much less about this disease than an experienced diabetic him/her-self.
We live and fight with this monster every day. Nothing compares to that.

 

[Stav]

Please I wish there were two different names!