How do you deal with misinformation?

[bbyyisa]

I was recently diagnosed with t1d. Most people assume you can only get t1d at a young age, since I was diagnosed at 17 people assumed that I have type 2. My school nurse said to me "You can ween yourself off insulin... you are pre-type 2." While the other nurse insisted I get a bicycle to exercise. At this point I was literally strait out of ketoacidosis weighing only 99 pounds. I had to keep telling them that I was type 1! How do you explain t1d to people who just don't get it? : (

 

[Mike d]

Your school nurse is (putting it VERY kindly) out of her depth. Get a report from your doctor and shove it under her nose. Better still, get your parents to do it

 

[EllieM]

Wow, that school nurse is certainly clueless. I would say outdated, but when I was diagnosed (49 years ago) it was assumed that all diabetics diagnosed at less than 30 were T1, and over that age T2. I would think that even now most 17 year old diabetics would be T1. I would hope that a school nurse would be familiar with T1, since most diabetics at a school would be T1, but it sounds like this one is completely ignorant.

Dear nurses, I am T1 diabetic which means my body no longer produces insulin and I have to inject it for the rest of my life. This bears no relation to the more common T2 diabetes that can often be put into remission by a combination of diet and exercise. The most serious problem that I am likely to have at school is hypoglycemia, low blood sugar which results when I do not eat enough to counteract my insulin. It would be helpful if you were aware of this so that if I am ever found confused or unconscious you can help by giving me glucose.

Lots and lots of hugs. I think it was easier when I was your age when people had no clue what diabetes was at all.

 

[Deleted Account]

Unfortunately, it is a common misconception that type 1 can only be diagnosed as a child.
However, more than 50% of people with type 1 were diagnosed aged 20 or older.
It is a challenge to deal with the misinformation and some mansplaining. For example, one of the guys I worked with took some time to explain adult onset diabetes.
How to deal with it?
Firstly, don't take other people's ignorance personally.
Then, you have a choice : ignore them or become a diabetes educator.
The latter becomes easier over time but the former may be best when first diagnosed.

 

[EllieM]

or become a diabetes educator.

I'm always in favour of this for people I'm likely to spend time with. The more people who know about hypos the better. I've had my life saved by a work colleague who realised my blood sugar was low when I did not (I used to lose hypo awareness during pregnancy). When I'm alone at a public swimming pool I always tell the life guards where I've put my glucose and that I'm T1, just in case. (I've never yet had a problem in a pool, but hypos and water do not mix.)

 

[Marie 2]

It is ridiculous and you just have to figure out the best way to either inform people or ignore them. Because there are so many type 2's out there now, everyone has learned about diabetes through a type 2's "issues".

My sis in law was diagnosed with type 2 just a year ago and wanted to high five me as she said she joined the club when she saw me. I asked are you type 1 or type 2, and when she said type 2 I just go oh, mines type 1, I have to have insulin even for broccoli, I don't make insulin, mine is autoimmune.

A chiro I used to use just about 3 years ago told me she heard a herb was really good and reversed one of her patients diabetes. I told her no herb can reverse type 1, it can certainly help type 2's but it can't reverse my type 1. She then said but you didn't get it as a kid so you can change it. I told her no, I have the same thing as the kid disease, I just got it when I was older. It ended with her saying well, you should still try it.

So it can be very aggravating, it really is a constant thing. My main reply is I am a type 1, it's different, I have to take insulin for everything, even if I eat broccoli. Because frankly most people recognize broccoli as a healthy food and it makes them realize, oh it might be different then.

 

[Seacrow]

I'd ask my GP to write a letter to the headmaster/mistress asking if they were aware the school nurse was giving out potentially lethal advice. Possibly also covering 'what to do if bbyyisa has a hypo' at school. If people don't understand, sometimes they will inject insulin to 'fix' the hypo. Your school nurse sounds like she needs to hear from a 'higher authority' to believe you, which is annoying, but some people are like that. Good luck.

 

[Dave Wilde]

Yes, I was diagnosed last month and people keep giving me diet advice. It drives me nuts

 

[kitedoc]

Hi @bbyyisa welcome to the TID club which none of us volunteered for .

At school of course each teacher and every nurse needs to be au fait with what hypos are and what to do about them, and that eating in class is sometimes necessary, and no-one is to pinch your lunch or keep you in a detention at mealtimes.
Having some form of bracelet or necklace from one of the compnies who make them and keep you on a register is a good idea if you are ever found unconscious or unable to communicate.
One of the biggest misconceptions is that diabetics cannot have sugar ever.
As a TID, on insulin, you need to be aware of hiw alcohol can affect you, in particular its dangers if your bsl drops.
The Diabetes Associations in most countries can provide some education material though it is not always up to date.
Best Wishes.

 

[Robinredbreast]

I do feel for you, this type of thing is worrying. About 2/3 years ago I go for my diabetes yearly check at my surgery and this is the conversation.

DSN; Ah I see you are type 2
Me; Err no,I think you must be looking at another patients record
DsN: No, it says Type 2
Me; I have been diagnosed type 1 for 27/8 years
DSN : Dr P, (my new doctor, whom I had never seen) has changed it to Late Type 2 diabetes ?
M: I am not type 2
DSN: Well, Dr P is very knowledgeable in diabetes
Me; Well, he has got it wrong
DSN; But only children and young people are diagnosed with type 1
Me; You're wrong, all ages can be diagnosed with Type 1
I went away fuming, because my new GP just decided that I MUST be Type 2, I told my hospital what happened and they said to ignore them, I am definitely type 1!!
It beggars belief and sometimes our lives are truly in their hands.
ps It has been changed back to Type 1.

 

[Robinredbreast]

I was recently diagnosed with t1d. Most people assume you can only get t1d at a young age, since I was diagnosed at 17 people assumed that I have type 2. My school nurse said to me "You can ween yourself off insulin... you are pre-type 2." While the other nurse insisted I get a bicycle to exercise. At this point I was literally strait out of ketoacidosis weighing only 99 pounds. I had to keep telling them that I was type 1! How do you explain t1d to people who just don't get it? : (

Hi, 17 years old is young, what is wrong with these medical professionals, makes me

 

[Jordi77]

I can remember a couple of years ago when a man who didn't know that he was diagnosed with type 1 diabetes as his doctor only got the results when he died anyway he went to the USA for a holiday and took ill and he never had insurance to pay a doctor over there and he was left on a trolley and as the night went through he passed away and when it kicked off about it over here it turns out most of the new doctors are the same as I can prove as I have been type 2 for 25 years and when I was diagnosed I was told I was type 1 but it took them 2 years to figure out why I was still producing insulin from my pancreas which I still am today and that they messed up and realised that I have had type 2 diabetes since I was diagnosed and they still try to take blood from me to try to find out if I have type 2 or type 1 diabetes and they are still getting it wrong every time I go to see the doctor every year

 

[winelover]

I was originally diagnosed as t2 but when i lost a massive amount of weight over a couple of months they checked and said i was t1 after all. When i went for my eye check at the opticians i was told that i couldn't just change my mind and be t1 and that t2 take insulin as well! Its hard to understand why there is so much misinformation by professionals who are supposed to know about this.

 

[Dark Horse]

Diabetes UK produce an information booklet about Type 1 which is for schools:- https://www.diabetes.org.uk/resources-s3/2018-11/Make The Grade Schools Pack.pdf

You could print off a copy and give it to the school nurse and/or suggest the school orders some copies.

 

[Grumpy ole thing]

DSN; But only children and young people are diagnosed with type 1

It beggars belief and sometimes our lives are truly in their hands.
ps It has been changed back to Type 1.

...even if that was right did she think you could just remain a child for 27/8 years or perhaps we should be put down when we reach adulthood...as someone wise on here has said before...we're not Peter **** Pan.

Welcome to the forum @bbyyisa, 17 is young (especially to us oldies) ;-) Maybe your mum or someone from your GP practice could advise your school nurse, in case you need a hand with anything?

keep smiling, it does get easier

 

[Colin Crowhurst]

perhaps asking the nurse when she became a doctor and is eligible to overrule your GP might make her blanche!
I was diagnosed type 1 a year ago at the age of 50!
When you know better please have the strength to put them right or suggest they contact your GP, but above all, ignore advice that seems at odds with your GP/ DSN , checking on here will also help a lot.

 

[Jools08]

I was 57 when diagnosed as a type 2 by my Gp, thank goodness that the practice nurse had a deep knowledge of diabetes because she didn’t believe it because of my medical history leading up to my diagnosis. She push my Gp to let me have further blood tests and it turn out that I’m a type 1.5 and then she push the hospital to give me a pump which has improved diabetes and life. I know I was lucky to have such a knowledgeable nurse

 

[Bill_St]

And even doctors can get it wrong - Both ways!

“Study found misdiagnosis of type 1 common, with half of those misdiagnosed still being treated as though they had type 2 diabetes 13 years later.”


http://www.diabetesincontrol.com/mi...A6rm-woyL2x2QBIYDL2lv6ftQGOtGoJza1MeLASQIpogo

“Type 1 diabetes defined by severe insulin deficiency has similar clinical and biological characteristics to type 1 diabetes occurring at younger ages. However, in later life, patients with type 1 diabetes leading to endogenous insulin deficiency are frequently diagnosed and treated as having type 2 diabetes. Clinicians should be aware that patients progressing to insulin within 3 years of diabetes diagnosis have a high likelihood of having type 1 diabetes, regardless of initial diagnosis.”

https://link.springer.com/article/10.1007/s00125-019-4863-8

 

[sbnz]

... I have been type 2 for 25 years and when I was diagnosed I was told I was type 1 but it took them 2 years to figure out why I was still producing insulin from my pancreas which I still am today and that they messed up and realised that I have had type 2 diabetes since I was diagnosed and they still try to take blood from me to try to find out if I have type 2 or type 1 diabetes and they are still getting it wrong every time I go to see the doctor every year[/QUOTE]....
Wow Jordi77 that sounds very frustrating to say the least. My understanding is that having a particular (antibody ?) present in your blood is what distinguishes someone as being 'type 1' - if this is the case - surely the specialists should have sorted out whether you are t1 (or t2) by now? However perhaps your particular blood results or whatever they are using to diagnose you is confounding/confusing them (?)...there seems to be a growing range of types of diabetes being recognized today beyond t1, t2, lada and diabetes occurring during pregnancy. If the treatment/management you are getting under the label type 2 seems to be working well to keep your blood sugars in range and other health markers good then it would seem to fit. However if you still have queries/issues with your diagnosis then may be useful to see another specialist for another opinion?
By the way I was diagnosed type 1 when I was 16 (now 53) and it is now recognized that some type 1's do continue to make a little of their own insulin.

 

[sbnz]

And even doctors can get it wrong - Both ways!
Thanks so much for posting those references...it is a (little) reassuring to see the situations of misdiagnosis being recognized AND reported on.