April 8, 2013

Diabetes by any other name would still be as sweet.

Living in a family with two T1D teens and a being T2D myself means a I have front row seat to diabetes differences. No two people with diabetes have exactly the same set of struggles. Unfortunatly there is often a desire to use diabetes differences as surrogate for virtue. 

That isn’t how it works.

I get parents of kids with Type 1, who feel frustration.  I have suggested renaming Type 1, 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.” This kind of frustration can lead some to less facetiously wanting to rename Type 1 so that their kids don’t get treated like they did something to deserve the chronic condition they have.

Some say, ‘Type 1 is different’ and our kids shouldn’t be stigmatized by association with Type 2. Well, yes, everyone diabetes is different and what works for one Type 1 child may not work for another. Certainly the self care process for Type 1, with daily injections starting the day of diagnosis can be viewed intense right out of the gate. No child with Type 1 is responsible for the genetics that increased their likelihood of getting it and no they shouldn’t be stigmatized by ignorance. 

Much of that holds true for Type 2 as well. No two cases of Type 2 are exactly the same and yes the initial treatment may variy from Type 1 and certainly varies from individual to individual, none the less it is often traumatic. Still, nobody with Type 2 is responsible for the genetics that increase or decrease their likelihood of getting it. Some already disadvantaged ethnic groups are at significantly higher risk for Type 2. Nobody with any type of diabetes should be stigmatized by ignorance and blamed for it. 

I am not jumping on board to the idea of re branding type 1, beyond being careful to be clearer going forward about the type of diabetes I am writing about. I do not wish to react to ignorance and stereotyping of a few without the recognition of the of larger ignorance and stereotyping that is rampant with all diabetes. That ignorance is at the core of all diabetes stigma. I want to avoid promoting false stereotypes and ignorant assumptions about all diabetes including Type 2, particularly for already inappropriately stigmatized populations.  

The most significant thing I have learned from diabetes is to honor others’ struggles without offering a simplistic solutions. In my view the solution to ignorance and stigma is education and empathy, for all people with diabetes. 

That certainly isn’t simple. 


  1. I've had two initial thoughts to this whole rebranding idea.

    1) If you keep the word diabetes in both of the names, you're still at the same problem. Diabetes will always just be diabetes to people. They are lazy and won't differentiate.

    2) If you did take out the word diabetes from both names, and gave each a unique name, would type 1 diabetes become such an insignificant disease (population wise) that people would cease to talk about it entirely? Or at least, to a much lesser degree because we no longer have type 2 to bolster our "street cred."

  2. "The most significant thing I have learned from diabetes is to honor others’ struggles without offering a simplistic solutions." -- Very well said, Mr. Dunlap.

  3. I really dislike the idea of renaming T1. Mostly because I don't like my interpretation the motivation behind it for most - "don't associate me with THEM"

  4. Jeanette Collier and I recently wrote a petition that exactly addresses the issues discussed in this very well-written blog post. We couldn't agree more with the statement "The most significant thing I have learned from diabetes is to honor others’ struggles without offering a simplistic solutions". We have written our petition with this spirit in mind. The goal of our petition is to benefit both the T1 and T2 communities and help protect our T1 children from dangers caused by the prevalent misconceptions. This is was not motivated by "stigma" attached to T2 being directed at our children. In fact, we consulted with several T2's as we did our research. We believe this is something that has allowed our petition to stand out from all previous attempts. Our goal is for this petition to benefit all of us through increases clarity in education and awareness, which in turn will facilitate better care and more productive fundraising towards a cure.

    We are petitioning is for a name revision- not a complete change. We just want names that specifically indicate the nature of each condition- something the numbers 1&2 do not. For T1 that nature would be indicated with words like autoimmune and Beta cell death. With a descriptive and meaningful name, the word diabetes would likely be dropped from common discussions. T2 will probably always "own" the word diabetes, but having it indicated with the words insulin resistance could help dispel some of the myths and stigma that surrounds that condition. Even other forms of diabetes like Latent Autoimmune Diabetes in Adults (LADA) and Maturity Onset Diabetes of the Young (MODY) have names that are more indicative of their nature. T1 & T2 are both definitely Diabetes Mellitus no matter how you slice it. To pull T1 out of that umbrella would be to change the entire classification of diabetes which is not going to happen- should not happen. We just want a revisions to the names of these two types of diabetes. We are not petitioning for specific names. We believe that the medical community is most qualified to determine the names. We just want the names to be reflective of the nature of each condition.

    We believe that a change will facilitate education, awareness and fundraising. It won't happen overnight, but its the first step toward clarity. While we would never compare cancer to diabetes, a look at the way various cancers are named validates our purpose. I can't imagine the confusion if all of those types of cancers were just called Cancer Type 1, Type 2 etc. How would each particular cancer educate and spread awareness, let alone advocate for a cure?

    We are 1 1/2 weeks into this and are approaching 2,000 signatures. It has been signed and shared by Dr. Camillo Ricordi of the DRI; respected Ped Endo, Dr. Stephen Ponder; speaker, author and health coach, Riva Greenberg; and Dr. David L. Katz, Director, Yale University Prevention Research Center. It was also the featured story on Bret Michael's Life Rocks Foundation. We have gone global with signatures from Italy, England, Scotland, Wales, Ireland, Germany, Canada, Argentina, Australia, New Zealand, Spain, France, South Africa, Saudi Arabia, and more. Our hope is to bring positive change into the lives of children and adults living with both T1D and T2D.

    If you haven't had a chance to actually read our petition, please click on the attached link to review.

    Thank you for the opportunity to discuss what we believe to be an extremely important cause.
    Jamie and Jeanette


  5. Thanks Jamie and Jeanette.

    I am facetiously down with, “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.” Beyond that I see changing names as treating the symptoms of ignorance not the root issues. YDMV.

  6. Hi Bennet. I hear you, but isn't the root of the issue and the key to all diabetes campaigns- Education and Awareness? Wouldn't the clarification of types, other than a vague number work to improve this? Clarity here allows us to build upon that to achieve all of our other goals. No, it won't make the disease go away, but it will aid in treatment, diagnosis, and funding for a cure. How? Clear names that indicate the nature will pave the way for better education and awareness. Status quo is getting us no where. Even Dr. Ricordi said in the comment he left when signing our petition, "
    "The confusion generated by the same name for two completely different conditions has been a problem for decades ... time for a change (at least in the name)".

  7. I read the petition before offering my two cents and the reference to the Bard. I think we will have to agree to disagree.

    Many diseases are poorly understood by those who don't live them and the name is no help: ALS, RA, ALPS, ATP, MS, ext.

    By to accepting that I cannot change misconceptions about diabetes mellitus, nor the centuries of medical history intertwined with that popularly misunderstood medical term can help me have courage to advocate for the changes I can make.

    My Diabetes May Vary.

  8. We do have specific names for LADA and MODY and yet even PWDs don't really understand what they are. I hardly think Insulin Resistance Diabetes is going to change the public perception of type 2 diabetes. It's not the name that gives the disease its stigma, it's the associated risk factors which the media blows up as being the sole cause, hence so many (INCLUDING the diabetes community) thinking that type 2 PWDs have brought it on themselves.

    A name change might remind some folks of which type is which, as occasionally people will ask if type 1 is the one where you need insulin. But beyond that, it won't help anyone become more educated, it will certainly not diminish the stigma of type 2 diabetes, and it could isolate type 1 diabetes from the very attention it so desperately needs.


  9. Thanks for your viewpoint, Bennet.

    You know how we feel:


  10. I lived with Insulin-Dependent Diabetes Mellitus (IDDM) for more than a decade, apparently, back in the 80s and 90s. Guess what? I was still living with juvenile diabetes, and eventually it just became type 1. Now, the petition-writers appear to want to go back to that more descriptive names of IDDM and NIDDM - names that the very medical community they're appealing to, decided they didn't want. I just don't understand this, beyond the emotional aspect of wanting better distinguishing between D-types.

  11. I love what Sara said in her comment:
    "Mostly because I don't like my interpretation the motivation behind it for most - 'don't associate me with THEM'"

    Even if the petition creators say that doesn't reflect their motivation for creating the petition, that is the motivation of many, many people who are supporting it. THAT is a problem that we need to try to solve within our community. Until we can better address it, the efforts to promote understanding from outside our community for our collective struggles will be that much more difficult.