Diabetes' Civil War: Type 1's frustrated at attention paid to Type 2's

That was the headline in an LA Times article yesterday: http://www.latimes.com/ct-met-diabetes-rift-20101122,0,2929350.story

Where do you guys stand on this topic? 

"Civil War" is over the top, but as someone who's been frustrated in having type 2 lumped into the same category with what we're dealing with I found some solace in this article.  It's nice to see it even brought up.

Wow - I hate to characterize it as a civil war, but I DEFINITELY feel the kind of frustration described in the article. If one more person tells me how to cure my daughter's type 1 diabetes, I might just have to walk away to avoid slapping them...

I really don't care.  I'm sure we who don't have type II have many misconceptions about it as people who don't have type I have misconceptions about what he have and deal with.  It's just the way it and it aint' gonna change anytime soon. But, I typically don't get comments because I don't tell anyone I have it unless they really need to know.  And I'm at a point in my life where it's easy to not share.  I'm well established in my career and work from home 90% of the time.  My friends and family know.

This was my favorite part of the article though:

What not to say

Six things it's better not to say to a person with diabetes:

•"Can you eat that?"

•"Do you have BAD diabetes?"

•"If you'd just exercise…" or "If you'd just eat better…" (Type I diabetes is an autoimmune disorder, unrelated to diet and exercise.)

•"You don't look like a diabetic!"

•"My grandfather had that and he lost his leg."

•"I could never do that." (Inject insulin.)

 

Has anyone NOT heard any of these?

I've said this before, but this is how I feel about the topic (I wrote an entire blog about it): http://cslifewithd.blogspot.com/2010/10/whats-in-name.html

I really don't think feeling angry at other diabetics is going to solve anything. Nor do I think changing the name is going to help anyone understand diabetes anymore. You can call it "Autoimmune Diabetes" and you're still going to get comments like, "Isn't that the one kids get?" It's not stupidity; it's simply a lack of education. Diabetes just doesn't fit the stereotypes anymore - adults develop type 1 and thin, young, healthy people develop type 2. 

We all have pre-conceived notions and misconceptions about things we don't understand. Rather than being annoyed, educate them, as you would yourself. 

Personally I am all about the name change. Now, don't get me wrong, I doubt a change in name will change any of the general public's conceptions of diabetes. People are always going to bother me asking the same list of dumb questions. Nevertheless, something I have thought of, and something touched on in the article was the idea that a name change would help with donations and work towards a cure. I have a feeling that many people are hesitant to donate to diabetes research because of the stereotypes of type 2's being overweight. Whether those stereotypes are right or wrong is another topic, but I think more people would be willing to donate to ABCD, which affects a smaller population but it is in all cases unpreventable, than to donate to diabetes research, which in the public's eyes is preventable and controllable. It would be like the little brother  coming out of the big brothers shadow. Just a thought.

Dan

P.S. ABCD is a name change I heard suggested once for type one. It stands for Auto-immune Beta Cell Disorder 

I really like the ABCD idea it'll definately be nicer to have people just ask what that is other than just jump to their own conclusions because they heard diabetes.

Calling it a "civil war" is insane! i don't blame type 2's for the misinformation in the world...i blame the people saying them! after reading the first little bit of that article i chose not to read the rest...why? because i didn't feel it would do me any good to find out more about this "civil war" we T1's apparently have with T2's...because that is just plain nonsense.

I have both type 1 and type 2 in my family. My grandfather and his parents were type 2, and my sister-in-law who lives with me is type 2. Her best friend and boss is type 1. So I've always known a lot about type 2, and have gotten a serious education on type 1 since Sarah's diagnosis.

I don't think it should be a battle. The issue is that they should be kept more separate maybe, and maybe this would be accomplished by a name change. People just don't have a clue what type 1 is, but everyone knows about type 2. Most people I've met will start with misconceptions. I will start by laying out that these are two completely different conditions, then explain the differences.

The biggest issue I have is in the communication. I know it's important to educate the public about the severity of diabetes (1 and 2), but at every single function someone spouts off a huge number of people who die from diabetes every year. Invariably I have my daughter with me, so it bugs me that they focus so much on worst case scenario. And they never qualify it with anything about how high the death/complications rate is for untreated or poorly treated diabetes. It just sounds like a death sentence - which is not fun for an 11 year old to hear! Of course I always talk with her to make sure she understands that she can live a full, long, happy life as long as she continues to care for herself.

[quote user="Michelle"]

The biggest issue I have is in the communication. I know it's important to educate the public about the severity of diabetes (1 and 2), but at every single function someone spouts off a huge number of people who die from diabetes every year. Invariably I have my daughter with me, so it bugs me that they focus so much on worst case scenario. And they never qualify it with anything about how high the death/complications rate is for untreated or poorly treated diabetes. It just sounds like a death sentence - which is not fun for an 11 year old to hear! Of course I always talk with her to make sure she understands that she can live a full, long, happy life as long as she continues to care for herself.

[/quote]

 

 

"well controlled diabetes is the leading cause of nothing"

I joined Diabetes Daily in Jan, 2007 and I have 7000+ posts there. I know David Edelman, the owner of the site. He started the "war" on his site "Which Is Worse...Type 1 or Type 2?" At least it was on the home page, and not in the forums, but there were some very angry replies. There were more than 125 replies and so many were from members of other diabetes sites. Word had spread like wildfire, and many had come to join the discussion/fight. So many member's feelings were hurt, and some left the site forever. However, Google and the newspapers have picked it up and the publicity has drawn new members to Diabetes Daily. Maybe that was the master plan at the offset.

I feel for this language issue, I really do, and it has struck me in other areas of my life besides my diabetes. It may just be inherent in our culture for these word association mixups to be rampant with our way of relating to people.

So I'm at a party and the hostess want me to try some food

I say "No thanks, I can't eat anything."

"Why not everything is so good?" says the host.

"Because I'm allergic to milk and everything has milk in it, but thanks."

"Oh I'm lactose intolerant too, you should be fine, here have a bite."

"No, I'm allergic to milk, I will stop breathing." (Great development in my milk allergy =p)

See that, word association issues. This isn't fun, it isn't something I often say in public, but when I used to it kinda made the diabetes name change take a step up in my mind. The difference between lactose intolerance and an actual milk allergy- one bloated and uncomfortable, the other suffering from anaphylaxis- yet even with a completely different name but the one person associated it with their version and understanding of a condition. This form of language empathy causes us to be lost in translation.

Even having said that, I'm all for a name change, we will still be related by our use if insulin and our mutual understanding of suffering, we can even still support one another. Just recognition of these two separate diseases by two separate names may help or even hinder in unexpected ways, I'd like to see what happens.

I love the idea of a name change--I kinda toyed with the 'Betasin" idea and think it would be cool to name it "Betaimmunisin". Along the same lines as the article --Beta (cells) immune (I don't have to preach that part to you all) and sin (that the beta cells don't work).  I also like that the end of it looks almost like "insulin".  IDK. A name change probably won't happen, but I thnk I'm gonna refer to my D as that.   HAHAHA

I am mad at all the attention given to type 2 diabetes it is not funny. Did you see the commercials with that guy saying 'diabeeetis' instead of pronouncing it right. I applaud the folks at my local stations doing commercials for JDRF.

i say "diabeeetis." does it really matter how you're pronouncing it?  if you weren't diabetic would you even pay attention to the commercials? probably not, so now you know what the rest of americans are thinking every time they see the quaker oats guy on the commercials. NOTHING! 

anger gets you nowhere. 

[quote user="C"]

i say "diabeeetis." does it really matter how you're pronouncing it?  if you weren't diabetic would you even pay attention to the commercials? probably not, so now you know what the rest of americans are thinking every time they see the quaker oats guy on the commercials. NOTHING! 

anger gets you nowhere. 

[/quote]

bwahaha i love that guy. you've seen the family guy skits right with him? OH MAN. hits my funny bone it does!

[quote user="Richard Vaughn"]

I joined Diabetes Daily in Jan, 2007 and I have 7000+ posts there. I know David Edelman, the owner of the site. He started the "war" on his site "Which Is Worse...Type 1 or Type 2?" At least it was on the home page, and not in the forums, but there were some very angry replies. There were more than 125 replies and so many were from members of other diabetes sites. Word had spread like wildfire, and many had come to join the discussion/fight. So many member's feelings were hurt, and some left the site forever. However, Google and the newspapers have picked it up and the publicity has drawn new members to Diabetes Daily. Maybe that was the master plan at the offset.

[/quote]

Do you know if that post on the Diabetes Daily website is still available?  I'd like to read it.  Can you provide a link?

Ideen, I went and looked for that blog on DD. I thought I could scroll down and click on "Older blogs" and go to previous pages, but it is not working. I get the "Fatal error" message, so it is apparently being blocked. I went to the forums and found one of David Edelman's posts and clicked on his name. One of the options is "blogs". That would bring up all his blogs. It no longer works for him, but it does for everyone else. I guess we will never be able to see that controversial discussion again. If I find a way to access it, I will let you know.

It seems like I'm in the minority here, but I think a name change would be a GREAT idea to HELP with education. It would be almost like starting over, and leaving behind the stereotypes.

Sarah, I also support your view.  The education would first help individuals within the medical community understand the differences between Type1 & Type2.  I've seen too many medical professionals unaware.  Granted, many are not trained in endocrinology, so by a new name and education, the medical community would be forced to explain the difference.

As someone just recently diagnosed with Type 1 (at age 29), I am all in favor of a name change. I think it would help people understand the difference and save me some of the long answers to the "I thought only kids get that?" questions...