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Is There a Civil War?

** There’s been a lot of conversation about the Civil war: Diabetes vs. diabetes article by Julie Deardorff that originally appeared in the Chicago Tribune.   One of the contributor’s was David Edelman and his post on Diabetes Daily, Which Is Worse? My personal reply to that thread was “The worst kind? That’s an easy one. It’s whichever type affects you or a loved one.”  So here’s my take on the whole thing…

Is there a Civil War? Yes and no.

The basis of the rift is the same as any bias or prejudice:  Ignorance.

While T1 and T2 both have the same basic symptoms and long-term prognosis if not controlled, the treatment regimens can be vastly different between the two types.

Most people learn about diabetes from the media (news, entertainment, opinion) and what they learn is very stereotypical. Diabetics are fat and lazy and it is their own fault.

When someone gets a diabetes diagnosis, either Type 1 or Type 2, that is pretty much all they know. They can easily end up feeling guilty for doing this to themselves and the stigma that the stereotype causes can make them isolated, not wanting to talk about it.

And that stereotype is totally incorrect. The cellular changes that cause insulin resistance in T2 can be detected years before the diabetes presents itself. The insulin resistance causes weight gain, so obesity is a symptom, not a cause. The general public doesn’t understand that just because there is a correlation between two things, that doesn’t mean that one causes the other.

And T1 is an auto-immune disease where their own body destroys the insulin producing cells in the pancreas.  Eating too much didn’t cause that type either.

With the stereotypes so firmly in place, any diabetic may feel stigmatized.  And a newly Dxd T1 may feel unfairly grouped with those “fat and lazy” T2s.  Wars have probably been started over less.

What a T1 may not know about a T2 is that controlling T2 requires lifestyle changes to exercise and diet, which are extremely difficult to accomplish (especially if you are not getting support), along with medication.  Seriously, how many New Year’s resolutions did you just recall reading that?

What the T1 sees is a T2 taking a pill or being very upset that their fasting glucose level was 140 this morning. To a T1, a pill is much easier than insulin and a lot of us are plenty happy with waking to a 140. However, what the T1 doesn’t see is that 140 IS a big deal to that person.  They don’t see the effort it takes to change diet and exercise habits.  Working so hard and then seeing a higher than normal number.

Coming from the other direction, a T2 may see T1s talking about counting carbs and just dosing correctly; i.e. T1s can eat anything they want. What the T2 doesn’t see is that is an ongoing juggling act that will never end.  And while T1s can adjust doses for food, there are risks associated with that.  A T1 can miscount or just calculate their dosage wrong; ending up in a potentially dangerous low (hypoglycemic) or high (hyperglycemic) episode.

When talking about meds, if a T2 skips a dose for a day or two, their numbers run a bit higher than normal.  For a T1, skipping meds for a day or two is FATAL. I’d probably be dead by this time tomorrow if left untreated.

So the T1 doesn’t see the same urgency in the T2 world. What the T1 may not see is that many T2s are only diagnosed after complications have already begun and, since there is not that same urgency as in the T1 world, it can become even harder to make those already difficult lifestyle changes.   The complications may not be evident yet, “I’m not having any problems. I’ll worry about it later”.   And then later arrives with irreversible damage done.

There are a large number of T2s who do take insulin, usually large amounts due to insulin resistance. It is usually a long acting version and since their bodies are still functioning “somewhat normally”,  low blood sugar incidents are relatively rare, but they are know to happen.

Blood testing is another area where there are differences. As a T1, intensive insulin treatment requires intensive glucose monitoring to be successful; i.e. avoiding both low and high glucose levels. So testing 6 or more times daily is not unusual.  A T2 may not require that much, and probably doesn’t. Testing first thing in the morning and a couple of hours after a random meal is probably good enough on a daily basis, but I’m not a doc so don’t quote me on that!

I’ve witnessed several of these spats and used to be a “T2 bigot” myself. Once I understood the differences AND the similarities between the two groups, I was able to put that prejudice to rest.

I do believe that it was a grave disservice to all diabetics when both conditions were called diabetes.  And while I see the logic in renaming Type 1, I wonder if that wouldn’t make things more confusing.  Someone at a higher pay-grade than me is going to have to make that call.

As I’m finishing this up, I bet 99.9% of the folks who read it already know this and I’m just preaching to the choir again.  (hmmm… seems I do that a lot).  I hope that Julie’s article can lead to more media awareness.  Media education is an area that I would like to see more activity from the national organizations.

But even if the JDRF and ADA both put out press release after press release,  write letters to the editor of every myth published, you have to wonder how much good that would actually do.  You can lead a publisher to a story, but you can’t make them print it.

It may just be that correct articles about the similarities and differences between T1 and T2 just isn’t “sexy” enough unless the horrible complications are the topic.  “If it bleeds, it leads” seems to be the mantra.

You don’t see many stories about people who have lived decades with T1 or T2.  They don’t have articles that show the incredible effort and dedication that it takes to survive.   They don’t show all the balls being juggled on a daily basis for the rest of our lives.

I sometimes wonder if we should just forget about what myths are still being pushed.  Maybe turn our attention to the vastly growing audience of diabetics and make sure that they understand the differences.

Make sure that they understand what diabetes is and isn’t, helping them overcome their fears and guilt that have been spawned by the myths and a diagnosis.  Empower them to take their local media outlet to task when some senseless drivel is spewed forth.

Perhaps then enough attention can be drawn to the harm these myths do and thereby lay them to rest.

© 2010 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

  • http://justicesmisbehavingpancreas.blogspot.com alexis of justices misbehaving pancreas

    I may get linched for this. While I totally agree with all you said…(mother of a type 1 wife of a type 2 who is not overweight) its sometimes easier said that done. For us its cause Justice watchs as his dad pops a pilll and keeps moving. He sees an occasional bg over 150 and never a low. Its just not fair he says. And quite frankly I agree. Ofcourse my husbands type 2 is different as is all diabetes. He tests 2x a day and hasnt been told to change his diet at all. Just to eat more actually…odd I know. So while there isnt a war sometimes it can be a battle to explain to a type 1 whos 8 why dad has it ” way easier”. With that said I wish the media would explain type 1 is autoimmune and 2 isnt always lifestyle choice. There would be a lot less hurt for all of us.

    • http://strangelydiabetic.com Scott

      Alexis,

      I can’t imagine how tough that is for all of you. I hope that things settle a bit as Justice gets older

  • http://www.diabetesdaily.com/pedersen Bob P

    Fabulous piece.

  • Pingback: Is there A Civil War? - Strangely Diabetic - Juvenation

  • http://www.mydiabeticheart.com/ Mike Durbin

    Great piece, Scott.

  • Katszr

    Wow…excellently written. I feel there should have been two names for the two types of diabetes too. Would have made my son’s life easier.

  • http://www.diabetesdaily.com David Edelman

    Scott, great piece! I’ve been struggling with how to respond to this. People with both diseases have many legitimate reasons to be frustrated at the disease and society at large. Some of those can be improved with education, others can’t.

    Part of me is just practical. I think there are real areas where people with both types can work together. In education, awareness, and practical areas, too. How to count carbohydrates? How do I get good insurance? I’m broke, where can I get supplies? What do you think of that new lancet?

    There’s a lot of areas where you can have vastly different experiences but still share lessons learned.

    I appreciate all the comments and thoughts. It’s really got me thinking.

  • http://www.diabetes1.org/ FatCatAnna ^^//

    Because of what I do – education with mainly Type 2 diabetics – it’s always rewarding when they walk away with a better knowledge of the differences between the various diabetes out there. They go on to educate others with facts that have developed dust webs on them for far too long.

    Like you say, with T1 it’s never ending for always calculating insulin requirements for that sinful piece of cake that a T2 would generally walk away from (though I tell them – a small piece is fine – but hard to tell someone who has always eaten that HUGE piece). Would I trade with a T2? I’m a programmed little soldier with having done this all my life – and hopefully with younger children today – who develop T1 like some of us have had since youngsters – with the better tools at hand – they will do even better then we have.

    Would I like to know what it feels like to be a regular bloke without any pill popping / jabbing of insulin – yes you betcha. Who wouldn’t say no? Though would it be tough to go back to the 24/7 regime. Hmmm – that’s a good question for another one of your blogs perhaps?

    • http://strangelydiabetic.com Scott

      ahhh.. the old “devil I know versus the one I don’t” topic?

  • http://nhstuff.blogspot.com/ colleen

    The very, BEST post I’ve read on this issue!
    Thanks for taking the time to write this.

  • tmana

    Well-written piece, and highlights some of the key issues in each of us understanding “the other (major) type of diabetes”. The differences are one reason that, where given the editorial leeway to do so, I prefer to use the term “autoimmune diabetes” over “type 1 diabetes”.

    That said, I’m also reasonably certain that there are at least three separate types of “type 2 diabetes”: one that is moderated by primary insulin resistance (due to protein-folding errors and/or insulin-leptin cycle issues), one that is moderated by lipokines (i.e., caused by obesity), and one that is moderated by primary glucose intolerance (i.e., consumption of simple sugars — typical presentation would be, failing an oral glucose tolerance test at the 15, 30, 45, 60, and 75 minute intervals, but back to reference normal at 2 hours).

    We need to look at “diabetes” as an umbrella term for multiple causes of persistent hyperglycemia in the same way that “cancer” is an umbrella term for uncontrolled pathological cell growth.

    • http://strangelydiabetic.com Scott

      Thanks Tmana,

      I’m not familiar with the lipokine form. Still got stuff to learn

  • http://www.thediabeticduo.com Renata

    Agreed, I think this is the best post so far on this subject. I wish now I didn’t graze over it so lightly, thank you for taking the time.

  • talesofmy30s

    Excellent, thank you for this piece. I agree that before we can educate the general public, we need to agree on what diabetes is as a whole, for better or for worse.

  • http://thepoordiabetic.com/diabetes-civil-war/ Ronnie the poor diabetic

    I have to agree with all your points well said and its also a well known truth that there is no love lost between the media and the diabetic community. I LAY THE BLAME SQUARELY on their doorstep.
    Like you stated the average Joe knows only what they see or hear on the news and the information is either misleading or outright wrong and the disclaimer at the end of the piece does little to lessen the impact a headline would, competing with this train wreck is not easy that’s why we face a monumental task in the name of diabetes awareness and diabetes education.

  • http://www.damdiabetes.blogspot.com Molly

    Great writing! Thanks for posting this.

  • Liz

    Great post, Scott.

    @tmana, it is not caused by obesity; it is caused by WHERE fat is deposited (apple body type vs pear body type) which triggers the genetic predisposition thing, along with the other diabetic genes. None of us can control where fat gets deposited, and many thin persons get a little fat once they past 30… I know someone who’s 40, and weighs 100 lbs and STILL got Type 2 Diabetes because of those few fat deposits. If Diabetes were only caused by obesity, ALL obese people would have it, regardless of their genetics.

    • http://strangelydiabetic.com Scott

      Liz,

      “it is caused by WHERE fat is deposited”

      wow, that is fascinating… yep, still lots to learn here

    • tmana

      Yes and no. Lipokines are secreted by active adipose tissue (which is primarily abdominal in origin) and interfere with insulin utilization.

      There’s a difference between “gaining a few pounds” and being “morbidly obese”, which we also tend to forget. (I suspect there is probably a trigger weight for many people with this particular tendency.)

      Also, I mentioned that lipokine-moderated insulin resistence is only one of several distinct causes of non-autoimmune persistent hyperglycemia (aka “type 2 diabetes”). In the case of your thin person with “type 2 diabetes”, the origin is probably not lipokine-moderated. It may be a protein-folding issue, it may be a food-sensitivity issue (does a low-carb or very-low-carb diet, or a low-GI/GL-diet help that person?), it may be a genetic issue (similar to MODY, but caused by more than one gene, or by a single gene we haven’t figured out yet)…

      In short, what I am saying is that some forms of “type 2 diabetes” are caused by obesity (lipokine-moderated), but not all forms are.

  • http://type1rockstar.blogspot.com/ Jackie

    I liked your article alot it was nice to read the differences. Hon! I’m not into the whole “who has it worse” game but it seems diabetes is just an umbrella term like @tmana said. I mean the symptoms are similar… but i know when i was first diagnosed i was given pills instead of insulin, 3 days later ended up almost going into DKA. So maybe the doc’s in the world need to look at things a little better when it comes to diagnosing a person. Kind of wish you included type 1.5 and info about diabetics getting type 2 or what do you even call people who just get low or people who are allergic to insulin? In the end it’s all about genetics i think. Like somebody said above obesity is symptom like cause, i will remember that. I do have one disagreement with your article. You wrote “What a T1 may not know about a T2 is that controlling T2 requires lifestyle changes to exercise and diet, which are extremely difficult to accomplish (especially if you are not getting support), along with medication. ” wouldn’t this statement be true for both types? not just type 2? I would say that being type 1 is a life style change as well, we can’t honestly continue some of our eating habits (like drinking soda or eating sweets as well), or did you mean something else?

    • http://strangelydiabetic.com Scott

      Jackie,

      You’re right, better eating and exercise will benefit anyone. I’ve been diabetic so long that I don’t remember the lifestyle changes that I made, so it seems I have a lot to learn about LADA as well!

      I tried to keep the post somewhat “generic” to keep it similar to what might be seen in the media.

      • http://type1rockstar.blogspot.com/ Jackie

        thank you so much for replying :)

  • http://sexydiabetic.com Chrystal

    I don’t think it is a civil war but more like the “separate but equal” mentality from the famous court case.

    I AM AN INSULIN DEPENDANT TYPE 2 DIABETIC. I TAKE LONG LASTING AND QUICK RESPONSE INSULIN. Bret Michaels states he shoot up 3 times a day. I do it 7 times a day.

    I am glad you wrote this article because the Chicago tribune article was full of ignorance. This article hurt my feelings as a Type 2 diabetic. Again this is separate but equal. As Type 2’s our money is good for getting laws past but anything else is unacceptable.

    I am intelligent enough to know not all Type 1 person’s are as silly as the ones in the article but I say that I have experience more discrimination and shear stupidity by Type 1’s than non diabetics. I have been refused member ship in a Type 1 only club because I am Type 2. I was looking for local support because I was having a rough time. What could my membership done to this group? What the purity that important?

    I don’t understand what the big deal is when Type 1’s have such a broad online presence. Everybody knows a token Type 2 but when you look at numbers and blogs the majority is Type 1. When you see groups advertising it is normally exclusive Type 1 groups.

    If we are truly to be equal than end the hypocrisy…end these separate but equal groups and meetings for Type 1’s. In my city I have yet to see a Type 2 only grouping or event. Let’s have events for all Types or none at all.

    • http://strangelydiabetic.com Scott

      Hmmm… I don’t see the issue as a T1 v T2 issue. If we’re to be all one big D family, then the issue belongs to us all.

      I see it as an issue of educated v uneducated on all D stereotypes and issues

    • http://strangelydiabetic.com Scott

      Chrystal, just curious, but have you had antibody and c-peptide tests performed? Almost all LADA diabetics are misdiagnosed as T2, sometimes for years before a correct diagnosis is made

  • http://sexydiabetic.com Chrystal

    “What a T1 may not know about a T2 is that controlling T2 requires lifestyle changes to exercise and diet, which are extremely difficult to accomplish (especially if you are not getting support), along with medication. ” wouldn’t this statement be true for both types? not just type 2?

    To answer Jackie………

    I am a insulin dependent Type 2.

    Before l was diagnosed 3 years ago the only thing i knew was that I was in my 30’s, eating, sleeping, working, going to school for the 2nd time and doing me. Then certain events happened and I was diagnosed.

    As an older person, I had to go through denial, I had to go through food changes and I had to loose weight. I HAD TO DO THIS ALONE. I didn’t have mommy there reminding me about taking my shots and such. As an adult people automatically think “you can handle it” and don’t offer and help. I had to realize that my body is telling me that I have to change. If it was so easy to do it then everybody including you would have a healthier life style.

    One thing you are over looking is when you are diagnosed at a young age you will have the support of your family and you grow up learning how to deal with your condition. Most people are happy to help young adults and kids. When you are older people and family may have their own problems to deal with. This is why a lot of older Type 2 diabetics don’t tell their family and make their situations worse because they don’t want to be a burden. they rather risk blindness then to worry people. At one time everybody thinks you are the strong person but now its your turn to be in need and lots of time nobody is there.

    After you have lived half your life doing whatever you want then to be told you have to become a monk for health reasons is like taming a rabid dog. Try changing a habit that you have like not drinking coffee. For 6 months.

    I hope this helps….

    • http://strangelydiabetic.com Scott

      In a perfect world, a child would have a “mommy” to do everything, but the world is not perfect and times are different now than they were when I was diagnosed. I was pretty much managing my own condition, also alone, since I was about 10 years old. And that is not because my parents didn’t support me or care for me.

      It was because they grew up during the Great Depression and sometimes life was just hard. I dealt with it the best I could, on my own, because that was how they raised me. To be independent, to be self-sufficient.

      At the age of 7, I learned that I would probably be dead by they time I graduated college. Knowing that I could die from DKA or a hypo event in my sleep. That is the reality I grew up with.

      I think that one thing you are overlooking, is that you didn’t grow up with this.

  • http://sweetlyvoiced.blogspot.com MelissaBL

    This cuts straight to the heart of it, Scott. Great post!

  • http://Babscampbell.wordpress.com Babscampbell

    Very well-written, Scott.

    Having experienced both “labels” I think you’ve represented us all quite well.

    There is SO much mis-information out there, misunderstanding, miscommunication and missed opportunity.

    I hope we’ll all learn a little something new each day so we can learn to support each other that much better.

    You’re my D-hero!

    • http://strangelydiabetic.com Scott

      ah shucks

  • http://strangelydiabetic.com Scott

    Thanks for all the great comments everyone! I appreciate everyone taking the time to read and respond!

  • http://www.diabetesdaily.com/knicks Sara

    Great post Scott! It seems that all of us who wrote about the article agree, there might be a war going on, but we don’t want to be a part of it.

    • http://strangelydiabetic.com Scott

      LOL, no kidding…

      Here’s a piece of useless trivia for you… During the American Revolution roughly one-third was pro-revolution, one-third anti-revolution, and one-third didn’t give a damn one way or the other

  • http://smashtastic.wordpress.com ashley

    Wow! I experience this battle every day with my family. My father is an insulin dependent T2. He was dx’d about 5yrs ago & refused to take oral meds or make adjustments to his activity and diet. In 2008 he was hospitalized & has been on a long acting & a couple units with every meal. My mother now refers to him as T1 & my father sees his insulin dependency as his doing, though I’m not sure which type he claims to be. It’s hard as a T1 with no opportunity to change my lifestyle, no matter how challenging.

    I think diabetics are apt to think of diabetes as their diabetes…or maybe that’s me. It’s hard to sometimes accept my father’s diabetes in my little world. It’s selfish, and maybe a little mean. But I also think it’s very easy to think of diabetes as your own, everyone’s diabetes differs – carb ratios, ISF, basal rates, pumps, pens, syringes… I can’t justify my selfishness, but I understand why it’s there.

    • http://strangelydiabetic.com Scott

      I also feel that it is “my” diabetes. It is a “problem” that I have to take ownership of because my health is my responsibility

  • Dayle

    Great piece, great points, great responses. Well done, Scott. I thoroughly enjoyed this and found many of my own thoughts, ideas and opinions articulated well here. One thing I would add, however, is an article from last year about people who have been living with diabetes for years and years (and years and years). I thought it was inspiring when it came out, even if it wasn’t mainstream media: http://forecast.diabetes.org/magazine/features/long-lives-lived-well

    :)

    • http://strangelydiabetic.com Scott

      Thanks Dayle, that was an interesting article

  • http://thegirlsguidetodiabetes.com Sysy

    When did you start responding to comments? Not criticizing, just saying I think it’s awesome!

    • http://strangelydiabetic.com Scott

      Thanks! thought I’d try something new… now I just need to post more on other blogs that I read almost everyday

  • ShelbysMom

    Best article I have read that really lays out the difference, and yes – bias. My daughter diagnosed 18 months ago and I’m constantly trying to educate people – thank you so much for writing this!
    No one seems to believe me when I tell them it had nothing to do with her diet – and everything to do with her genes…!