Tuesday, November 30, 2010

Diabetes by any other name...

Over the past week, the media has been busy discussing the "war between Type1 and Type2s".  Supposedly there has been a hot debate raging regarding changing the name of Type 1 diabetes to any but diabetes.  They say that some people with Type 1 diabetes feel that they are wrongfully lumped in with the stereotypes of people with Type 2 diabetes and that it becomes more difficult to lobby for cure funding.

The more I thought about this, the more I began to wonder, what's in a name? Before it was called Type 1 or Type 2 diabetes, we had Juvenile and Adult Onset Diabetes.  When my son was first diagnosed I definitely wanted a different name.  My son's diabetes was nothing like your grandmother's diabetes that she was diagnosed with when she turned 70.  My son did not get diabetes from eating too many chocolate bars when he was one. My son would not be "cured" by eating well, exercising and losing 50 pounds...he was less than 20 pounds when he was diagnosed and believe me when I say he didn't have an ounce of fat to spare

As time went on, I learned a lot more about Type 2 diabetes. I met marathon runners who were living with Type 2 diabetes.  I experienced the frustrations of people trying desperately to manage their diabetes with diet and exercise.  I learned that you did not have to be old, overweight, or a couch potato to develop Type 2 diabetes. 

There were differences between the two diseases for sure, but they both have to do with the pancreas not doing its job.  They both are silent killers. Neither diseases are taken serious enough by the public at large (or in some cases the people living with it).

This new debate has had me thinking back to the good old cancer advocates.  We all continue to stand in awe at the funding and awareness that is out there for cancer.  Not all cancers are the same however.  There is the sexy cancer, the cancer you don't want to talk about if you are a male, the cancer that is all your fault because you were a smoker or lived with one, and so many more. People living with these diseases do not ask to have each cancer recognized with a different name.  Despite all being "cancer", we immediately recognize pink as breast cancer.  We know about the "Dad's Ride for Prostate Cancer"  and we have seen the Heart and Lung Association extol the evils of smoking and its high risk for lung cancer.

Do we really need two different names or should we spend that energy simply educating people now on what Type 1 diabetes (or Type 2 if you like) really is?  People still call Type 1 diabetes Juvenile Diabetes so will yet another name make any difference in how they see our loved ones and people with diabetes?  I doubt it.

As Shakespeare's Romeo said, A rose by any other name still smells as sweet.  Type 1 diabetes by any other name is still just as horrible.  It still kills too many people.  It is still very serious and requires a lot of care.  It is still carries a terrible expense--both financially and emotionally.  The name does not change the facts.  We just need to work harder at making the world know the facts not the fiction.

4 comments:

  1. My sentiments exactly,Barb.
    I even quoted that Shakespeare line in my response. I was bothered by the article at first, as a T2 myself diagnosed at 19 and even 13 years ago mine was at first treated as a T1 but that another story all together.
    I believe there is no love lost between diabetes and the media truth be told, they will find the one bigot in any situation and blast their opinion all over their story which doesn't necessarily reflect the views of the community because this will stir people up and am sure it has.
    On my post I received a comment from a lady who said the reason she is advocating for a name change is because as someone on the front lines of diabetes research she sees all the research dollars spent on type 2 diabetes and this is stunting the development of a cure for type 1's, someone also said that they are tired of the stigmas associated with type 2 being pushed on type 1's.
    I was quick to point out however that the reason we don't have enough research dollars is people's perception of diabetes thanks to the media, that it is simply curable with diet and exercise, which is purely false for type 1 or type 2. plus yes there are obese couch potato diabetics out there but that's not all of us. until we get people to get it as one commenter said, name change or no name change we are still doomed.

    here is my response at the bottom please check out the link to Sarah of sarandipity's response as well very insightful
    http://thepoordiabetic.com/diabetes-civil-war/

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  2. I have always stated that I wished they had a different name. I don't know if it would help in education or diminish confusion amongst the public. I feel that it would eliminate that "common thread" with type 2. However, that being said, I don't even know how they would begin to change the name AND to update resources/texts/etc. would be a nightmare...and...as you pointed out we still need to educate, advocate, and then educate some more...A lot is in a name, unfortunately the name has already done it's damage...time to educate and get a move on...type 1 or 2...we all need a CURE.

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  3. Even if one renamed it, once you started telling people what the disease entails, they would go "Ohhhh, so you have Diabetes." lol I mean, you are more than right... What needs to happen is not a name change, but a reality change. We need to completely change our current agencies so that will effectively lobby for the realities of Type 1 (and how it's not just a children's disease that goes away when one grows up), as well as know how to work with Type 2 agencies to help put a spotlight on Type 1, as a combined effort. If we don't do these things, it's not going to matter if we call it "Sponge Bob," or if we call it Diabetes. Also, a lot of diabetics think they know ALL about Diabetes, but they may not even know enough about their own type, let alone someone else's. Many Type 1's tend to stop and think "We need a name change because all these stereotypes affect us so much," yet, they don't realize they horribly affect Type 2's, as well. We feel like we have to give support to people who don't want to support us, in many ways... and it's hurtful. Should we change our name, too? And to what? We need to fight for OUR education, much like AIDS patients have had to fight for educating people that not all persons who got infected were doing questionable things... And life just happens, sometimes... Why go around judging?

    Great post.

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  4. media promote their own agenda regardless of what effect that kind of propaganda has on regular working people.

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