LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Wednesday, April 24, 2013

Why I’m not signing the petition

I just got a heart-felt letter from Jamie Perez, one of two moms of kiddos with type 1 diabetes who are leading the fight to change the name of our disease. These two ladies are hardly the first to argue that the sister diseases of type 1 and type 2 diabetes are poorly named, but they are the first to successfully launch a grass-roots effort to try to actually do something about it. They’ve collected over 3,000 signatures on an online petition to the American Diabetes Association, the National Institutes of Health, and the International Diabetes Federation; and in the process have ignited a wildfire of passion and controversy.

This is not the type of situation I’m known for shying away from.

Their motivation, to quote from the petition, is that their sons are “subjected on a daily basis to ignorance and misconceptions.” They note, correctly, that the mainstream media frequently gets the two types of diabetes muddled. This dynamic duo believes that if the names of diabetes were revised to “more accurately reflect the nature of each disease,” it would “alleviate the confusion.” They think this would be to the advantage of type 1s and type 2s alike.

Jamie was writing to me to ask for my support in this effort. Oh, and not only did she write beautifully and passionately, but she made matters worse by telling me what a big fan she is of my writing—and as everyone knows, I’m a huge sucker for a compliment.

So it was with no small amount of guilt that I had to write her back, thank for her compliments, salute her for her passion, but to respectfully pass on joining her in this fight.

I’m not going to sign.

And I have four reasons why I’m not going to sign. Now, I’ve known about this petition for a bit, and even wrote about it in a roundabout way for Diabetes Mine. I did the background research into the last several times the names of diabetes were changed. And while our coverage, which Jamie felt placed her efforts “in a negative light,” has generated a ton of comments—more than 100 as I’m writing this—I have not read even one of these yet. Nor have I read any of the detailed posts written by my fellow diabetes advocates; both for and against the effort. I will. Eventually. But I thought I’d better commit my thoughts to paper first. I’m sure I’ll find myself tugged back and forth by the passion and wordsmithing of the opposing sides.

But think about what I just said.

Opposing sides? Since when? Since when should there be sides? Aren’t we all in this together? Apparently not. And that’s the first reason I’m not signing.

First: Look at what this is doing to us. We are fighting among ourselves. It’s a fucking diabetes civil war. We have bigger and more important battles to fight. We should be using our energy to combat public ignorance, legislative ignorance, and media ignorance—not fighting each other. Also consider, my brother and sister type 1s: So you feel bad when some idiot mistakes you for a type 2 and thinks you gave yourself diabetes by eating too much? Maybe you’d better do a knowledge check. Type 2s don’t “give themselves diabetes” any more than you did. How do you think they feel when exposed to the same cruel ignorance? You type 1s who want to ignore part of our family had better look into your hearts, or at least into a good medical textbook. The flavors of diabetes overlap, blend, and mesh much more than most people realize. Hell, if you really want to rename it, the only thing that makes sense is to drop the type 1 and type 2 and just call it Diabetes. Or maybe Fucking Diabetes. That would be more accurate. And much more fun.

Second: Changing the name would not cure pubic ignorance. Neither would it educate the mainstream media.

Third: It most likely can’t be done anyway. The petition is going to the wrong outfits. Who says the ADA, NIH, and IDF could change the names of diabetes if they wanted to? Diabetes is global. If you want to change the name, you really need to talk to the World Health Organization. And if you think our politics are bad, we are all bush-league compared to what you see there! And if the WHO did agree, beyond the three organizations petitioned, they’d also need to get the following on board: the JDRF, the two big groups of endos, the AACE and the ACE, not to mention the European Association for the Study of Diabetes, the Australian Diabetes Society, and the prestigious Japan Diabetes Society. And what about professional diabetes organizations in India, China, and elsewhere? Even if the three petitionees had the power to make all the other organizations toe the line, let’s not forget that they can’t even agree on a symbol for diabetes at large! Can you imagine the fights, egos, politics, and turf battles involved in choosing the new names? Getting all these organizations to agree on anything would require the same kind of miracle that it would take to get the US congress to pass a law!

Fourth, and most importantly: If, in the unlikely event this effort were successful, I fear it would have an unintended consequence for us type 1s, and for the two children whose experiences started this. Piggybacked onto the pandemic that is type 2 diabetes, we type 1s have some clout. If we get re-named, re-branded, re-invented, we just become another oddball rare disease. One unworthy of awareness, research, protection of law, or money. We’d risk becoming a fringe disease that only those who have been touched by it have ever heard of.

Globally, compared to other diseases, by ourselves, we type 1s just aren’t all that important. On the other hand, being in the shadow of an epidemic that casts a long shadow on the economies and societies of nations is to our benefit.


Anonymous Anonymous said...

The intent is not to take T1 out from under the Diabetes umbrella. I thought I'd point this out since you're comment implies it would. "If we get re-named... we just become another oddball rare disease. One unworthy of awareness, research, protection of law, or money." Beta Cell Apoptosis Diabetes BCA would absolutely remain Diabetes but with a more memorable type identification than '1' so when awareness & education efforts are made, the public can make actually make recognition with a name. The number classification system is NOT working. At no intent of T2's own, the media has inadvertently made it so T2 is synonymous with the word 'Diabetes' while the other type is struggling to hold onto an identity while this is happening. T2 doesn't have name identity issue - there big challenge is the stigma and I hope they fight this every step of the way. When Diabetes is mentioned, the general public automatically assumes the one they hear about on t.v. - this is just how it is. So if I can't lay any claim to the word Diabetes by itself, how do I distinguish my son's disease by a number '1'? Can I please help T2's with their struggle to fight stigma? And can they please help me to make it easier in making my son's disease more memorable with a real name so that when I do educate someone, they might actually be able to remember it? Can't we help each other? That's where the real divide is.

12:23 PM  
Blogger Jamie Perez said...

Will, I appreciate your respectful blog; and while I realize I might not sway your opinion, I would like to address some of your points. On your first and last points, we are petitioning to rename both T1 and T2 to actual descriptive names rather than meaningless numbers. We are not changing the fact that they are both D. The two sisters would just be called something other than Type #. It's not about removing T1's association with T2. It is not about T1 being subjected to the stigma of T2. Its about the misconceptions surrounding BOTH types. In a way, it IS about the stigma attached to T2, but not in the sense one might think. It's about that stigma being applied to both T1 and T2 and how that inhibits education, awareness and fundraising for all types of diabetes. It is about the confusion caused by designating both conditions with just a number and how unique names for each type of diabetes that reflect the true nature of each condition will lay the foundation for better education about our diseases. We believe that this will do nothing but benefit fundraising efforts for all D- and again T1 and T2 will still be sisters. They will just have names that make sense. Just like two sisters in real life- do they have to be named Child 1 Smith and Child 2 Smith?

And while the debate regarding our petition is obviously quite divisive, the intent and content of our petition should not be. Our goal is for this petition to benefit all of us through increased clarity in education and awareness, which in turn will facilitate better care and more productive fundraising towards better treatment and a cure. Of course, it does not directly benefit progress towards a cure, but it does so in an important indirect way. We believe that clarity in the names is the first step. It won't happen overnight, but it is a much needed first step. And like you stated in your second point, changing a name won't cure public ignorance or educate the media. We agree. We have to do that. Our D education and awareness campaigns have to do that. We will continue to do these things, but with names that actually have a little educational value in and of themselves the process will be easier. The numbers 1&2 just add confusion. Nowhere in our petition do we perpetuate the myths that T2's gave themselves D. In fact we mention that as part of the stigma that needs to be stomped out. We look at descriptive names as an opportunity to re-educate the public in the case of T2's and just educate in the case of T1's.

On your 3rd point, our petition is directed to the very organizations that were represented on the international Expert Committee on the Diagnosis and Classification of Diabetes that released the current classifications of the various types of diabetes in 2004. This committee was sponsored by the ADA and included representatives from the ADA, the IDF, and the NIH. The WHO was consulted but not one of the decision makers. On the other orgs like JDRF, Endo groups, etc- we absolutely agree its important to get them on board and that is part of our promotional platform. However, we felt the petition should be directly addressed to the decision makers and those who have influenced will be targeted as supporters.

3:07 PM  
Blogger Jamie Perez said...

Pease see my comments above first. One final point I want to make on the "diabetes civil war"- don't the supporters of this movement count? Those opposed to the petition are making the point that we shouldn't be doing this as it is causing this divisiveness- that we are doing "this" "to" the D community. But really, what about us? We believe that many of the opposition's arguments are prejudiced by prior renaming attempts and that a thorough, unbiased reading of our petition might show things in a different light. I do realize that not everyone will agree and they will have valid reasons; but to say that the divisiveness is caused by our movement totally discounts the opinion of the many to whom this cause means so very much. If we were to stop this campaign right now, do you think the divisiveness will go away? Just because the D community sweeps the dirty laundry under the rug doesn't make it go away. Those of us in support of name revisions will still desperately desire the change. So does the fact that we have been silenced mean the divisiveness is gone? It just means this who don't favor it don't have to hear about it anymore, but its still there.

3:09 PM  
Anonymous Pearlsa said...

Great post, well said.

11:00 PM  
Blogger Skye said...

I'm entertained that this has gone so big and so divisive! My gripe used to be that we use the word "diabetes" for both variations of the disease, not that the adjectives are wrong. As we learn more though about how both versions start and behave and even merge though, I'm glad nobody decided to run with my annoyance and change anything!

"Type 1" has just as much non-meaning to as many people as "Beta Cell Apoptosis" will, and Type 2 vs "Insulin Resistance" is the same. Using bigger words that nobody understands isn't a useful move in my book. I'd consider supporting a name update if we were going to Plain English- understandable by regular people on the street- but I don't see what using harder to pronounce words is going to do for anyone. My suggestions for name changes for the types of diabetes would be along the lines of "dead pancreas diabetes" and "cells that don't absorb insulin diabetes". If I say 'brain cancer', nobody gets that confused with 'liver cancer' because we use words everyone is already familiar with to label these diseases.

I think Will makes an excellent point though that a lot of us 1s out there are just as guilty of stigmatizing the 2s as the general public is, and I think the more we squeal about being so much "different" than they are, the worse it will get for all of us. The misconceptions the general public has about diabetes in general aren't going to go away with some new harder to pronounce- albeit more technically descriptive- names for the various versions.

2:23 PM  
Blogger Kate Cornell said...

Thank you from the bottom of my T2 pancreas...or is that T2 crappy, I like crappy T2 pancreas the best even if it's not all that accurate.

It does seem like a civil war, even if that was not the intent of the petitioners and their supporters. I'm all for putting our energies into busting the myths and the media seems like the best place to begin.

9:21 AM  
Anonymous Stephanie said...

Not everyone will agree, and I believe the Jamie and Jeanette understand this. All they ask is for you to read the petition with an open mind and make a decision based on what you read- not what you hear.

Also no matter whether you agree with the petition or not you at least have to respect these women. They identified what they believe to be a problem and are actively working towards changing it. How many of us in the D community complain about something- whether it be name confusion or the stigma that is attached but do nothing towards changing it? I have much respect for Jamie and Jeanette for taking action.

11:55 AM  
Anonymous Natalie ._c- said...

I read the petition several times. And while the stigma of T2 is not ever actually mentioned, its ghost is still CLEARLY there. Just in the example of the comments that people had made about the children clearly showed the stigma. For a much better take, read Bob Pedersen's blog on the issue.

Then there is the fact that ALL of us suffer "beta cell apoptosis". Which the general public, AND the media will totally fail to understand. There are obese T1s and thin t2s and lots of people whose diabetes doesn't fit in a box, anyway, and the more science gets to know, the less those boxes fit anyway.

I understand passionate parents' desire to protect their children, but children do grow up, and the vast majority of people with diabetes are adults, and have learned to deal with ignorance issues. If the person is worth educating, then explain it to them; if not, come up with some snarky remark and walk away. Parents, protect your OWN children, and leave the rest of us alone. Or if you REALLY want to do something, engage in a letter-writing campaign to the cheapy grocery-store publications that advertise "Reverse diabetes in 20 days with this magic fruit!" THAT'S where the real need is, not some name change that will accomplish nothing because the public will understand NO more than it did before. Are you up to combatting the media, which is where the action REALLY is?

5:39 PM  
Blogger Jamie Perez said...

It's not just the ghost of the stigma that's there, the actual stigma attached to T2 is clearly there, but not in the sense you think. Like I said, it's about that stigma being applied to BOTH T1 and T2 and how that inhibits education, awareness and fundraising towards better treatment and a cure for ALL TYPES of diabetes. It is about the confusion caused by designating both conditions with just a number and how unique names for each type of diabetes that reflect the true nature of each condition will lay the foundation for better education about our diseases. The Expert Committee did our community a grave disservice when they settles on the numbers 1&2 as names. Names are designed to be descriptive- to help as an identifier. We are petitioning for something that will help the education process. I just don't know how anyone can say they prefer the numbers 1 & 2.

We will protect our own children and our goal is to make a difference in their lives no matter how old they are. Our goal is also to make a difference in the 1,000's of people's lives who are signing our petiton. People who are not just parents, but T1 adults and T2 adults. People who can see the value in names that add clarity. We are not bothering you so please do not tell us to leave you alone. Disagree? Don't sign, but don't insinuate that we are out to bother you.

And we are really doing something and we are going to attack the media. A name change for the most common types of D is a perfect catalyst for change within the media.

And one more thing to consider in the comments left re: children. Isnt it possible that some of those are just a small tidbit of their thoughts? Those comments are 1-2 sentences in most cases. You do not know what they feel about T2's themselves. Just because someone doesn't like the stigma surrounding T2 to be attached to them, doesn't mean they have any type of negative feelings towards T2's themselves. Are you telling me that T2's like the stigma? I would not think so and like I said our petition is motivated by that as well.

6:06 PM  
Anonymous Anonymous said...

My son is 15. I signed for him. When I asked him if he thinks a name change would help to distinguish the differences between both types of diabetes, he said "yes". He may be young and idealistic in thinking a name will solve all the problems- but I'll take that over older jaded adults who see this petition as a way to divide rather than bring people together.

7:51 AM  
Blogger Sarah Kaye said...

This comment has been removed by the author.

9:10 AM  
Blogger Jamie Perez said...

This comment has been removed by the author.

9:36 AM  
Anonymous Lauren Plunkett said...

"Leading the fight to change the name of our disease" ????
I've OWNED my type-1 for almost 20 years. Moms, if you change the name of my disease, you change my identity and all the other type-1's that are kicking this thing (diabetes) in the ass.
The media messes up all the time! Doctors mess up all the time. We only have ourselves to blame for misinformation. Diabetes is a "welcome to the team" kind of disease. Support each other and forget the other guys that don't know any better. Name change or not, the idiots and ignoramuses of the world will never go away (titles like "MD", "RD", "CDE" not necessarily excluded).
Teach your kids about us- those of us who are commanders of our Type 1, are fit, healthy, and good looking (just sayin').

6:09 PM  
Anonymous hascheks said...

I am an Australian type 2 diabetic coping with the stigma attached to being so. Here the first question most people ask when I tell them I am diabetic is Which type? 1 or 2. The implication being are you innocent or guilty of having "a lifestyle disease" The difference is well entrenched in the publics mind.
Ps: I like your suggestion of changing the name to Diabetes, just about sums up my opinion of it and the preventitive health movements hamfisted efforts to health education and predjudice.

4:44 AM  
Blogger Tamara Hagler said...

It is no wonder that the media, public and healthcare world see us as different breeds...we are perpetuating it ourselves. Did I cause my T2? Not entirely...but I didn't and don't help matters any. Let's try to get along people without attacking those that try to educate and make a difference. We need to respect each others opinions even though we don't necessarily agree.

9:21 AM  
Blogger Laura Kilpatrick said...

It is unfortunate that there has to be such a divide. How about an effort put forth in educating the masses instead of trying to change a name to disassociate type 1's from type 2's. No matter what "type" of diabetes, it still is diabetes. The sad truth to all of this is that many type 1's want to distance themselves from the horrible uneducated ignorance comments that "type 2 is caused by lifestyle."

7:34 PM  
Blogger Jamie Perez said...

It IS unfortunate that there has to be a divide. Putting forth an effort to educate is exactly the goal of this campaign. In our opinion, it is clear that the confusion and misconceptions about both T1&T2 have resulted in the perception that Diabetes, as a whole, is 'no big deal'. This attitude is adversely affecting awareness and fundraising efforts. We believe that clarity in names given to these two types of Diabetes will enhance educational campaigns for all types; which in turn will benefit fundraising towards better treatments and a cure.

Additionally, we view society's attitude towards diabetes, T2 in particular, as a form of bullying. In the case of both T1&T2 children, the bullying is apparent and direct. For adults with diabetes, the bullying is in the form of societal stigma. A primary principal of dealing with bullies is that it can not happen if the targets do not "allow" it. Descriptive names would empower people with diabetes. It's very hard to empower ones self with a "type" of a disease that others think they know all about. However, being able to say a name such as Insulin Resistance Diabetes (IRD) or Beta Cell Autoimmunity Diabetes (BCA) is empowering. Even though more explanation may be needed, it empowers. It presents an opportunity to educate about the the autoimmune nature of T1 and the various factors that cause the resistance that triggers T2.

Those are the reasons we have filed the petition. It has surpassed 5,100 signatures from more than 25 different countries and it is continuing to garner support from well-respected individuals within the diabetes community. It made an appearance in editor letters of The Washington Post on 6/25/13 and it is being featured in the editorial of the Fall issue of Diabetic Living magazine.

We truly feel that nothing but good can come out of the changes we propose- for BOTH T1 and T2.

7:59 PM  

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