2013-04-12

Does Type 1 Diabetes Need A New Name?

The hat tip goes to the always-excellent Wendy Morgan. It appears that there is a new petition out there to rename type 1 and type 2 diabetes mellitus. Whether you should sign the petition or not, is naturally a matter of personal choice and preference. I have no strong opinions on the survey itself.

I will say, however, that I don't see the point of signing the petition. My reasoning is as follows.

Reason #1: Type 1 And Type 2 Diabetes Mellitus Is Already Thoroughly Descriptive
The petition's website says the following:
There are other forms of Diabetes with names that more accurately reflect their nature, such as Gestational Diabetes, Maturity-Onset Diabetes of the Young (MODY)and Latent Autoimmune Diabetes in Adults (LADA). What nature does Type 1 and Type 2 indicate? They are the most common forms of Diabetes, yet their names remain the most generic and are easily confused.
I am not sure this is 100% true. My understanding was that the "Type 1" nomenclature referred to pancreatic failure, while the "Type 2" descriptor referred to insulin resistance. Therefore, Gestational Diabetes is a special case of Type 2 diabetes, while LADA and MODY are special cases of Type 1 diabetes. I just perused the website of the American Diabetes Association to verify this and found nothing to contradict my claim.

Perhaps the confusion stems not from the Type 1/Type 2 nomenclature, but rather from the newly recognized, special-case scenarios of Type 1 and Type 2 diabetes. Gestational diabetes gets a special name because, even though it is a form of insulin resistance (i.e. Type 2), it is not "forever diabetes" like more traditional cases of Type 2. LADA gets a special name because its more gradual and adult onset makes those of us who have it more susceptible to medical misdiagnosis. MODY is nothing more than traditional Type 1 diabetes diagnosed at a different age.

Yet the language is entirely consistent: Type 1 refers to the death of pancreatic beta cells and the resulting inability to produce insulin; Type 2 refers to situations in which the pancreas and its ability to produce insulin is not the core problem, but rather the body's insulin response is inhibited for non-pancreatic reasons.

No matter how one acquires diabetes mellitus, that person's body will reflect one of two scenarios: the inability to produce insulin, or the inability to absorb insulin. Stunted production is Type 1; stunted absorption is Type 2.

Reason #2: Diabetes Nomenclature Is For Doctors, Not Society At Large
Wendy Morgan makes a great point that I'm sure anyone with Type 1 diabetes understands full well:
I've been annoyed for years. Whenever I'm in public and pull out my pump or CGM, I get, "what's that?" I explain and then, just yesterday and almost every single time, I get, "Oh! So it runs in your family?" Or, " My sister got it from eating too much candy." Or, "So you have to watch your sugar, don't cha?"
Nooo! Type 1 diabetes isn't like that! We all want to grab people by the shoulders and shake them when they say this stuff to us. She continues:
You've seen my posts about my tween. In 7th grade and she does everything possible to avoid letting anyone see her manage her diabetes. Few know and she wants to keep it that way for now. The main reason, other students only know about type 2. It's what grandma has or Uncle Joe. He's real overweight and had his big toe cut off. "It's real gross." 
That is what my daughter wants to avoid. What do you say to that? Communicate with fellow 12 and 13 year olds? "Oh! You have this all wrong. I don't have what your grandma has, I have something that is completely out of my control. It's an autoimmune disorder..." Glare. "Whatever." On goes life. Misconceptions remain. 
This poses a safety hazard, too. If friends don't know, what if there is an emergency. Wi makes the call for help? Maybes teacher who thinks the same thing?
Ms. Morgan's point is spot-on, and her perspective is basically this: Wouldn't it be great if we had something more descriptive to tell people when they see us injecting our insulin or futzing around with our pump or CGM? Wouldn't it be great when we were asked what we're doing to have an answer that doesn't make people think about their fat grandma who can't keep her hands off the tub of ice cream in the freezer?

It's a valid concern, but renaming what doctors call Type 1 and Type 2 diabetes will have no impact on this. It has been years since doctors changed the name of "manic depression" to "bipolar disorder," and yet we still hear the term "manic depression" being thrown around. VD is now called STI, but still people talk about VD.

And suppose I told someone that I have LADA. What do you think would happen next? I actually know the answer to this already, because I have told people that I have LADA. They simply ask, "What's that?" And then I have to describe how it is a type of adult-onset juvenile diabetes, and then they're back to talking about their fat grandmother. So the name does not actually solve the core problem.

But that doesn't mean we can't find something better to tell people. I, for one, have occasionally opted to describe my condition as "pancreatic failure" instead of "diabetes." That usually suffices to indicate that my condition is different from their grandmother's.

Another option is to simply not make an issue of it. When asked "Whatcha doin'?" simply reply, "Taking my insulin," and proceed as usual. If you get the follow-ups, you can simply say, "Well, I have a totally different condition than your grandmother has. I won't bore you with the gory details, but they are two completely different diseases." End of conversation.

Remember, most people are really just curious. They don't want to embarrass or frustrate us, they are genuinely interested. I know that doesn't help a teenager feel "normal," but teenagers do eventually grow up and find their groove in life. This is a life-long challenge. Learning how to talk about it without feeling frustrated or embarrassed is an important part of coming to terms with your condition.

Conclusion
I firmly believe that we diabetics have to make the best choices for ourselves, based on our own personal experiences. So if your experience leads you to believe that this petition will do some good, please do surf over to the website and sign it. One thing is for sure: signing that petition will not adversely impact my life at all. Just because I don't think it will solve the problems it aims to solve doesn't mean I think it's a bad idea. After all, it comes from a good place that every diabetic can easily understand.

Having said that, I do believe that we diabetics individually need to make the difference in our lives. It's not always easy to explain our condition to others. It's not always easy to explain how some of us Type 1 diabetics have figured out how to eat ice cream without experiencing hyperglycemia while others haven't.

But learning how to relate information to others in a way that makes them understand and feel more comfortable with how we individually prefer to manage our condition is part of having diabetes in the first place. There will always be ignorance and confusion out there. It's not as if a name-change will suddenly educate society about something they simply will never understand.

Far better to simply come to terms with how life is, and make the best of it.