Letting go of "Diabetes"

[Sarah Maddie's Mom]

Just about everyday there is a post on the Forum, or a conversation on the Chatroom, that makes clear the absolute and utter mess we are in with regard to the name of the condition that effects us and our kids.

I suggest that we can no longer lay claim to the word Diabetes. Our tenuious hold on the term simply cannot withstand the onslought of Type 2.

I have decided to admit defeat. They can have it. As far as I'm concerned my kid is, "insulin dependent". That's her condition: Her pancreas doesn't make insulin - she is dependant upon getting it - that her diagnosis. I will no longer use Diabetes to explain her health situation.

As none of the public's ideas about diabetes apply to her - she isn't obese, or sedentary, she does not need sugar-free candy, she didn't bring this on, and she can't cure it in Hallie Berrie fashion by "weaning" herself off of insulin. So why should I persist in calling her "diabetic"? This word is evolving, and I have no power to direct the definition that emerges - so I'm letting it go. I'm waving the white flag.

[Boo]

I can understand where you are coming from, but I'm not ready to join you (yet). As for now, I'll continue with my optomistic (though perhaps not realistic) view that the general public can become better educated. I will continue to attempt to politely change individual's perceptions of T1 diabetes, one by one. I've got a long road ahead of me...wish me luck. Maybe in a few more years, I'll become more jaded and throw in the white towel myself, but until then, I'll keep plodding along fighting the battle.

I suspect that most of the general public knows enough to associate the term "insulin dependent" with diabetes. (Although that might be where their knowledge of diabetes ends, as mine did before my son's diagnosis.) So, my thought would be that as soon as you use that term, many people will respond, "oh, so she is a diabetic?" Then, you'll be back to square one. :rolleyes:

[oskar]

Auto- immune insulin dependant for life? AIID?

[EmmasMom]

"Auto-immune insulin dependent for life."
AIID... I like it!:)

I tell people that Emma has "Auto-immune diabetes that was dx'd in infancy", and that usually tips them off that it is different, but they still hear that D word cling to the myths, stereotypes, ignorance, etc.

[sam1nat2]

I"m with you!! My life is busy and I don't have the time, energy or desire to care what uninformed people think. Those that know us know Sam is a type 1 and understand a bit, I can't ask for more caring friends, so if strangers are ignorant, so be it.

[AJsmom]

We have "insulin dependent" on our son's medi id tag.

[frizzyrazzy]

I usually just call it Juvenile Diabetes (even though that is fraught with it's own problems) but normally people understand that more than type 1 diabetes. I know that I knew nothing else about it, but I knew that Juvenile was the kind where the kids were insulin dependent and had to take shots and it was bad. And I knew the stereotypes of Type 2. Since Ian is a child still, the term works for us and I usually don't get weird comments when I say Juvenile Diabetes. When I say Type 1 diabetes, that's when we get the trouble.

[Amy C.]

I think this is a great idea. I am starting to call it insulin dependent now -- not diabetes.

My son's ID tag says Insulin Dependent, which is so true.

[AlisonKS]

I've been referring to it as juvenile diabetes lately too-since I can't say insulin dependant to some-type 2's can be on insulin too!

[badshoe]

I went through this and came up with this name for it:

I don't need the D-Day Details I only Need Carb Counts for your Menu and Does Anyone Have a Ouija Board so we can Figure Out Why the Insurance Doesn't Know What is Up With the CGM Because Parents Never Get to Sleepabetes (http://ydmv.blogspot.com/2007/07/rome-didnt-fall-in-day.html)

[Tori's Mom]

We have "insulin dependent" on our son's medi id tag.

Which brings up a whole new thought. Many of us are diligent in putting "Type 1 Diabetes" on the Med alert tags. However, over and over we know medical personnel do not have the knowledge to differentiate between the types of Diabetes. So, what good does "type 1" do on the tag. We would be better off doing the insulin dependent probably!!

[frizzyrazzy]

I think my son's says "diabetes - needs insulin"

[Momof4gr8kids]

Insulin Dependant - hmmm, if you think about that one, we are all insulin dependant. I'd rather call Julia pancreatically challenged from an auto immune disease. I like Bennet's idea, but even the acronym is too long to say on as little sleep as a T1P gets.

[MamaChrissa]

I'll stick with Type 1, and tack on insulin dependant and/or auto-immune disease as necessary for further description. I refuse to let the stupid or uninformed change my language or the name of my son's condition. Why should *we* change anything...they should learn!

[Mama Belle]

Insulin Dependant - hmmm, if you think about that one, we are all insulin dependant. I'd rather call Julia pancreatically challenged from an auto immune disease. I like Bennet's idea, but even the acronym is too long to say on as little sleep as a T1P gets.

Ditto. We all need insulin to live. this descriptor does nothing for me. Some type 2s require MDIs to live, so it isn't like that is the difference between type 1 and type 2.

I'm over it at this point. I know the difference, my kid knows the difference and anyone else who doesn't know the difference can stand to be educated. Does it still bug me when I hear stuff like that Halle Berry thing? You betcha. But at this point it isn't worth it for me to invest my waning energy over the opinions of people who don't matter. I'd rather channel that energy into making sure that my daughter knows what she has ahead of her and how to take care of herself. I'll take the time to educate those willing to listen, but for everyone else, they aren't deserving of my time or attention.

[piratelight]

I'm with Bennet's name too - I recall that post and really enjoying it. I just need to work on remembering the entire name.

[deafmack]

Just about everyday there is a post on the Forum, or a conversation on the Chatroom, that makes clear the absolute and utter mess we are in with regard to the name of the condition that effects us and our kids.

I suggest that we can no longer lay claim to the word Diabetes. Our tenuious hold on the term simply cannot withstand the onslought of Type 2.

I have decided to admit defeat. They can have it. As far as I'm concerned my kid is, "insulin dependent". That's her condition: Her pancreas doesn't make insulin - she is dependant upon getting it - that her diagnosis. I will no longer use Diabetes to explain her health situation.

As none of the public's ideas about diabetes apply to her - she isn't obese, or sedentary, she does not need sugar-free candy, she didn't bring this on, and she can't cure it in Hallie Berrie fashion by "weaning" herself off of insulin. So why should I persist in calling her "diabetic"? This word is evolving, and I have no power to direct the definition that emerges - so I'm letting it go. I'm waving the white flag.

Don't worry, the publics idea about diabetes doesn't fit many with type 2 either. Somehow it is a misperception that has been passed around by the media. When people say something. I just say there are several types of Diabetes and Type 1 is where you need insulin in order to survive.

[rickst29]

Um, our disease is to be renamed as "Chronic, Ruthless Attack on the Pancreas". Acronym has four letters, leave out "on the".

"I don't have diabetes! But every day, my life is full of CR-ay-P. All day long, I have to put up with CR-ay-P. And every night too, just more CR...P. I never get a break!" :p

By the way, that other version of diabetes is also going be renamed, from "Type 2" into "Number 2". If you think that Halle Barry sounds confused about "Type-1" and "Type-2", just imagine what a mess she's gonna make explaining the difference between her old CR-ay-P versus her new (and improved) "Number 2"! It'll make your head spin :p:p

[badshoe]

rickst29 you are full of CR*P - LOL

[Deannas mom]

I usually just call it Juvenile Diabetes (even though that is fraught with it's own problems) but normally people understand that more than type 1 diabetes. I know that I knew nothing else about it, but I knew that Juvenile was the kind where the kids were insulin dependent and had to take shots and it was bad. And I knew the stereotypes of Type 2. Since Ian is a child still, the term works for us and I usually don't get weird comments when I say Juvenile Diabetes. When I say Type 1 diabetes, that's when we get the trouble.

This is what I say as well, when Deanna was diagnosed, her peds. Dr called it Juvenile Diabetes.. that term hit me like a ton of bricks..I knew next to nothing about the different types but I knew the term Juvenile diabetes..I knew it was bad and it ment lifetime shots of insulin. I believe that if he had used the term type 1 , I would not have had the same gut reaction.

[czardoust]

I like the insulin dependent idea. As far as Halle Berry. We all know she is swimming in a great big river cause De Nile. Sooner or later if she doesn't buck up and face things, she's going to be drowning. What is trying to prove to herself? Cause she isnt proving anything to anybody else. :rolleyes: