Getting others to tell the difference

[Subby]

I like people to understand I am type 1. The types may not be perfect, indeed I show signs of both type 1 and 2, or more specifically absence plus resistance, but at this stage at least, people cannot separate type 2 from having eating problems and "just" taking meds, and that inevitably is the direction people go. It's not so much the stigma issue, it's just the pure irrelevance of what people think they "know" about me if they think I am type 2.

I sympathise with T2s for the assumptions and the stigmas - guess it partly comes because there are so many T2s and it's the one treated so often, rightly or (more often) wrongly in the media - but I don't think a solution of any kind for that, is for me to jump in the boat as well. I prefer to try and outline I'm T1, that it was an autoimmune attack taking out my pancreas, that I need to take insulin for all needs in my body, and that T2 is just another kettle of fish. (And I'm happy to discuss it if we make it past base T1.)

Deus, I've had the "you've got the bad diabetes" a few times... it's can be quite fun trying to work out an appropriate response to that... I usually just respond "I don't know about bad, but I do take injections for everything I eat."

[art]

is it really important to anybody but you what type you are?
You're a diabetic. That's it.

Art

[Subby]

That's "what"?

I don't know who you are directing that at, but for myself I have no reason why you feel the need to dictate that to other people in different circumstances.

As I have outlined the reasons above, I do not like people being misinformed as to medical and lifestyle needs, in certain situations. Especially being insulin dependent, it can at times be downright frustrating, embarrassing or dangerous for someone to have no idea.

I don't understand the imperative for people to pretend there are no practical differences. Is it some kind of collective gesture here I just don't get? If you are talking important things, what is important is that I am me, not that I am a "diabetic" or "type 1" (both of which are just various levels of defining physical or medical conditions, nothing else). When it comes to practical matters, sometimes diabetic cuts it, sometimes there are reasons for people to be more in the loop, for me at least.

[sarahspins]

The overwhelming majority of people with T1 develop the condition before the end of adolescence

Have any evidence to back that up? I have read in numerous places that up to 2/3 of T1 cases are diagnosed in adulthood...

This is a bad as saying that all T1's are skinny as a rail when they're diagnosed, and that isn't entirely true either.

[dbaratta]

I'm just looking for a little mnemonic sort of things (like Never Eat Shredded Wheat for the order of the points of the compass) rather than giving her a lecture on the complex epidemiology of medical conditions related to the homoeostatic system.

How about a good medical journal then.

[jer.lawrence]

I just usually go with "I'm the type that doesn't need shots yet."

It makes it simpler for people who don't understand. If someone seems interested, I'm always happy to explain to them (to the best of my ability) the differences between the two types, but most people, I've found, aren't interested.

I've also gotten "Oh, so you have the GOOD kind" from a couple of people. I guess it's "good" in that it's making me have to lose weight, eh?

[soso]

Ask her who is number one in her life...then just hope she says you..lol...

I have had to fend off some pretty annoying comments about my diabetes, based on what type I am.. I am sort of tired of being told 'it sometimes goes away'... gosh knows I wish it would eff off.........

[DeusXM]

Have any evidence to back that up? I have read in numerous places that up to 2/3 of T1 cases are diagnosed in adulthood...

Simply googling "type 1 diabetes diagnosis age" will bring up plenty of results indicating that the peak age for diagnosis in the US is 14, that in some European countries there is evidence to suggest the age of diagnosis is actually getting younger, and that the vast majority of cases occur before middle age. I'm aware that antibody testing suggests that it's supposedly more common in adults but I'd suggest you'll see a very, very sharp drop off in cases of new diagnosis shortly after the early 20s.

This is a bad as saying that all T1's are skinny as a rail when they're diagnosed, and that isn't entirely true either

No it's not. I quite clearly said that the majority of T1 cases occur prior to the end of adolescence, not all. In any case I would also say the majority of people diagnosed with T1 would be very skinny at diagnosis. What you're suggesting is very bad - you're actually suggesting that because a small minority don't conform to what is a generally accepted 'norm', we should try and ignore the fact there is a norm, presumably out of fear of 'unfairly' labelling the overweight 90-year-old who suddenly gets diagnosed with T1, rather than the far more common and likely skinny 14-year-old.

People, I put in a bloody disclaimer saying that I was fully aware the issues around type classification are not set in stone but you know what? Telling people that T1s are the ones with glutamic acid decarboxylase antibodies, islet cell antibodies and insulinoma-associated autoantibodies, although accurate, probably isn't the best way of getting non-diabetics to remember the essential differences between the two types.

I wasn't trying to start some scientific discussion about the interesting myriad ways in which diabetes manifests itself; I was trying to start a fun discussion aimed at coming up with amusing ways of explaining to the general public (who generally don't really give a toss) how to understand the basic differences.

[fgummett]

I understand the frustration but you're fighting against the MTV generation and "sound bytes", where it is so much easier and succinct to just say "Diabetes".

I thought my T-shirt slogans were a fun direction to take this discussion... maybe we can get a Pancreas icon as widely used as the Heart symbol?

[notme]

Honestly, I don't think it is important that people understand what type of diabetes I have, but it is usually the other person that asks. I also get the question, "do you have the bad type" or "did you get this as a child"? Or the typical, "do you have to take insulin?" So then it does become important to try and educate, as they are asking the question.

I have tried all of the basic answers. However, I also got type one at 31 years old. So you can't use the "I got diabetes as a child". The person asking usually isn't wanting a twenty minute education on Diabetes, so I would love a quick answer also. Not that I care, but they have asked.

I know people will cringe at this, but I usually try to make it basic so people will understand. I say that I have juvenile onset type of diabetes and got it late in life, being that I am immature. I try to make a quick joke of it and leave it alone. Most people aren't interested.

I would also like the people I love to at least understand the basics. I get that. My parents never really understood diabetes. They also just knew that "I had the bad one". Really very frustrating. Luckily, my husband gets it.

[foxl]

Have any evidence to back that up? I have read in numerous places that up to 2/3 of T1 cases are diagnosed in adulthood...

This is a bad as saying that all T1's are skinny as a rail when they're diagnosed, and that isn't entirely true either.

I suspect that the distinction here is whether or not LADA is included, and since it has a different antibody profile and clinical profile ... should it be? We are not insulin-dependent as soon as classic T1's.

Of course none of this helps answer Deus' question!

[Mick]

I was dx'ed 44 years ago, at the age of 13, with what they NOW call type 1. Back then, they told me I was a "Juvenile Diabetic" and had "Juvenile Diabetes", as opposed to the fat old lady kind that my grandmother had. I've always used that terminology in my own head, although I DO know T1 from T2! Somewhere along the line, these "Type 1" and "Type 2" labels popped up, I can't even recall when, but I never really paid much attention to them--I still think of myself as a Juvenile Diabetic, even though I'm well past my juvenile years (as are my children!) However, I'm still somewhat of a Juvenile Delinquent...
Michael
JD (That's Juvenile Diabetic, NOT Juvenile Delinquent!!)

[art]

Subby it was more or less directed at me.
I'm a Diabetic. So what?

What type? The Twinkie type. I can't eat them.

No offense was intended..
Art

[Granny Shanny]

It makes sense to me that the people nearest and dearest to us could be expected to remember a few of the more salient facts about our condition. And if they're near/dear enough to be the ones responsible for us in case of emergency, they darn well BETTER have the facts straight.

I think you need a REALLY catchy tagline, Deus, to hook a gal who has trouble with left-right directions. If she knows it bothers you, and she feels as strongly about you as you feel about her, there should be SOME way to get this stuck in her memory! So good luck with that, and I intend NO sarcasm when I say it!

[howdysf]

sometimes rather than saying I have Diabetes, I say I have "Juvenile Diabetes"... despite the fact I was diagnosed w/ type 1 at age 32..