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27 Responses

  1. kdroberts
    kdroberts January 14, 2011 at 7:20 am | | Reply

    Good post. The other major factor is that people who don’t have diabetes and don’t know about diabetes are getting their info from the media and then sticking their foot in it. I can only imagine what would go through the mind of a parent with a young type 1 child who gets told that they caused their child’s diabetes by letting them eat sugar/not having them exercise enough/not feeding them right/etc and that their friends, sisters, cousins, grandmas, aunts, brother cured the bad type of diabetes with cinnamon/chromium/the bark of the wulu wulu tree/etc.

    The infighting between types is like 2 people fighting over which is better, to have your right arm cut off or your left arm chopped off. Either way you end up in a situation that sucks.

  2. Sysy
    Sysy January 14, 2011 at 8:09 am | | Reply

    I enjoyed reading this. I agree and hope to point out that guilt is something you choose to let someone make you feel. So just as Alan said, we can choose to “drop the guilt” and move on. And we type 1′s can choose to carefully craft our message: that we don’t blame anyone, just that we deserve specific consideration just as much as the type 2′s deserve it.

  3. Anne
    Anne January 14, 2011 at 9:13 am | | Reply

    Thanks for sharing your thoughts….

    I think those who want to rename type 1 diabetes should consider that a lot of support probably comes our way due to the confusion between the types and the significantly higher prevalence of type 2.

  4. Anne E
    Anne E January 14, 2011 at 9:39 am | | Reply

    I have Type 1 and don’t feel like I should feel bad every time I distinguish the fact that I have Type 1. It isn’t because I don’t want to be lumped into Type 2 because Type 2s did it to themselves, deserve it etc. It’s because I have Type 1 not Type 2, and they are different. I hate that now every time a Type 1 reinforces the differences between the two types we are being labeled Type 2 haters. The diseases ARE different, and we Type 1s are a small minority (10% of the overall Diabetic population). I see nothing wrong with educating people about my specific disease. In fact, I think it’s dangerous and defeating to lump us all together.

  5. Pubsgal
    Pubsgal January 14, 2011 at 9:49 am | | Reply

    Thanks for writing this, Alan. I agree.

    As a person with type 2, I found Jenny Ruhl’s article, “You Did NOT Eat Your Way to Diabetes” (http://www.phlaunt.com/diabetes/14046739.php) to be a well-researched case for dropping the guilt. As Alan said, the best thing was focusing on what I was going to do going forward, and it’s made all the difference in my health and well-being.

    I’m sorry to say, though, I was dismayed by the tone of some discussion in the diabetes online community toward those with type 2. Although I was really tempted to tune out completely, I found some type 1 bloggers who kindly educate people about the differences and misperceptions they face, and I’ve learned quite a lot. I think we all deserve better awareness and more constructive approaches to treating all types of diabetes.

  6. Eric
    Eric January 14, 2011 at 10:09 am | | Reply

    I have mixed feelings on this subject. One benefit to renaming and distinguishing between the two types is that this will help reduce confusion and promote proper education. The downside is how this may impact research and funding to finding better treatment or even Cures for these two diseases.

    One of the things that would help is if the media was able to change the perception of the word Diabetes to reflect those with type1 more so than type2. Right now in the media we have the opposite effect of Cancer. No one makes fun of a cancer patient. but there are MANY types of cancer, some not serious at all yet as soon as the C word is mentioned everyone believes there is a serious illness.

    That is what I want when people say the D word. Instead right now people all look at the media and see diabetes as some kind of mild illness that can be fixed with the right diet, exercise etc etc. Diabetes should be looked at more seriously regardless of which type someone has. This would benefit people of either Type1 OR Type2 diabetes. With this kind of unification there are also better changes of funding and research dollars as well!

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  8. Roselady
    Roselady January 14, 2011 at 11:24 am | | Reply

    Great article. Another interesting read.
    I’m very new to diabetes, but as a parent to a new CWD, I too have noticed that the type 1s really try and separate themselves from the type 2s, but I think it’s mostly because they feel so misunderstood, with a lot of publicity going to the type 1s. Therefore, it can be such a sensive topic. I, for one, just assume the general population doesn’t know the nuts and bolts about type 1, because I never knew anything until we got a family diagnosis — and I don’t get offended at all if someone doesn’t quite get the differences between us and type 2s. I’m sure most people are interested to learn about the differences if you tell them.

  9. Jan
    Jan January 14, 2011 at 11:34 am | | Reply

    Type 1 is, plainly and simply, a different disease…. at least according to her pedi endo. I, for one, do not wish to separate the two camps, but for selfish reasons…. i am afraid Type 1 would become another orphan disease, without the backing of the general “diabetes” population, which is predicted to grow so that 1 in every 3 will have Type 2 diabetes. That is a lot of political clout. I believe the obesity in Type 2 is caused by insulin resistance. Use of injected insulin exacerbates weight gain, so you can have heavy Type 1s also, who really are not overeating. The weight gain is neither type’s fault. The frustration of many (but not all) Type 1s feel, I believe, is that this burden is put upon them in childhood. The general public does not understand that there is a difference between Type 1 and Type 2. Imagine the chagrin of a child, who has always been super thin and in the 20th percentile for weight all her life, being lectured and blamed for her diabetes caused because she ate too many sweets and even lectured on weight, from her far heftier classmates. Just spouting media misinformation and ignoring what is before their very eyes. Any more weight loss and she would be anorexic. This contributes to eating disorders in teens. So I am just as interested in correct media coverage for Type 2, because she is treated by the public as a type 2 and unfairly experiences the same shame, blame, etc. as a type 2. And has since the age of 8. I want correct media coverage for both Type 1 and Type 2. A lot of Type 1s think just changing the name of the disease will easiily remove them from the fray altogether. And I can’t blame them from not wanting to take on this fight. But I believe separation of the two types will not ibe beneficial in the long run for Type 1s. And, regardless of type, there are things we can learn from each other. In unity there is strength.

  10. Vint C
    Vint C January 14, 2011 at 2:09 pm | | Reply

    Great article. I’m a Type 2 diabetic. And I don’t consider myself to be a fat, old, lazy slob. I also don’t think I’m middle-aged but that’s a story for another day! I stay moderately active and I’m managing my diabetes very well without medication. I know this won’t always be the case, but for now it is working.
    Your article was very interesting to me. It’s refreshing to hear someone who’s on our side, rather than the media take on it. When I was diagnosed, I was booked in to see a diabetes nutritionist. I left that appointment with a tremendous amount of guilt. She told me that it was all my fault and I had caused it. I have never been back to see her in two years.
    Two weeks after I saw the nutritionist, I met my diabetes educator. She told me it was all about genetics. Yes, big people get diabetes. But she also pointed out that there are people twice the size of me who don’t get it. My diabetes educator is amazing – full of praise and encouragement – and I actually enjoy my visits with her.
    I’m going to check out your books, Alan. Thanks for this article.

  11. riva
    riva January 14, 2011 at 3:46 pm | | Reply

    I think I once said we should change the name of type 1 diabetes to distinguish it from type 2 in the hopes that people would: 1) understand these are two different conditions 2) realize that type 1 needs intensive management and given the use of insulin can be life-threatening and 3) with greater awareness maybe get more funding. As the internet is wont to do, I seem now to be leading the charge to change the name of type 1 diabetes ;-)

    I have said type 1 and type 2 are equally serious because both lead to the same complications from high blood sugar. 1 in 5 type 2s are not overweight. I imagine they must also feel maligned by a smirking public accusing type 2s of causing their disease with their lazy, gluttonous ways. Furthermore, it’s not yet known which comes first – the excess weight or the insulin resistance, so for those who throw stones, we can’t draw a simplistic cause and effect line between weight and type 2 diabetes.

    That said, I think a lot of the rift between the types is because as a “1″ we are all but invisible with so much media attention on type 2 diabetes. While type 1s typically need more intensive management and live with their condition longer, most type 2s are asked to make preventive behavioral changes and change habits grown over a lifetime. Neither is easy.

    My only hope is that we all live long enough to see a cure and gain incremental advancements that make life easier along the way.

  12. Natalie Sera
    Natalie Sera January 14, 2011 at 10:08 pm | | Reply

    I am a glorious 5 lb. over BMI 24.9. No one ever picks me out as a Type 2, so I have heard some repulsive conversations blaming obese people for bringing it on themselves — not knowing that I am EMOTIONALLY obese.
    There is so precious little known about Type 2 and obesity — especially the fact that MOST obese people are NOT diabetic.
    I am a long-term diabetic (20 years), and there is no way mere diet and exercise would get me off insulin. In that respect, I am more like a Type 1 (which is how my doc has me down), but I have utmost sympathy and respect for those who struggle with obesity and Type 2. It’s just not so easy as “diet and exercise” There needs to be a lot more research into both obesity and Type 2, and not just platitudes.

  13. riva
    riva January 15, 2011 at 6:48 am | | Reply

    One other thing I’d like to add – when Ricki Lake said 10 days ago that juvenile diabetes is preventable, and a cry went up in the t1 community, at the deepest part of that cry was a basic human desire to be seen. A lot of the “seeming” strife between type 1s and 2s is not ill will, but a feeling that type 2 has robbed us of any visibility and all but made type 1s invisible. I wrote about it in the only article, 1 out of 50, the Huffington Post has ever rejected from me. A Sweet Life put it up immediately.http://asweetlife.org/riva/blogs/type-1-blogs/the-ricki-lake-type-1-blunder/13505/

  14. Niko
    Niko January 16, 2011 at 7:55 pm | | Reply

    “From my reading, it is becoming increasingly clear to me that the genetic tendency to diabetes is related to the genetic tendency to obesity, and which comes first is becoming a chicken-and-egg argument. There is a correlation between obesity and diabetes, correct.”

    This comment perfectly illustrates why we need a new name for type 1. There is NO correlation between type 1 and obesity.

  15. Natalie Sera
    Natalie Sera January 16, 2011 at 9:20 pm | | Reply

    Ah, but there is a STRONG correlation between loss of beta cells, build-up of glucose in the blood and the tendency to develop horrible complications in both Type 1 and Type 2. Obesity is the very least of it.

  16. Andrew
    Andrew January 17, 2011 at 5:44 am | | Reply

    What about M.O.D.Y 1 through 4.
    It is rarer then type 1 and 2. it is about 2% of all diabetics ( in canada where I live) there is less then 500 of us in the whole Country. It is a genetic form of Diabetes cared on the X chromosome (usually from the mothers genome). Without getting into to much genetics. It is is rare that diabetics are tested unless you have an amazing endo.
    It is NOT type II NOR is it Type I, it is a best called a mild kind of type I. Drugs for type II don’t work and insulin is tricky because the dose can be trick.
    I have been dealing with this for 5 years. I think both side need to get over themselves OR take some graduated level genetic and endocrinology classes. I fell a lot of this back an forth between the two groups is due in part to the “Google” it and now it is fact problem. In the end we all have shit we have to deal with with, our lives are much harder then the average person. WHAT IS THE POINT OF THIS BACK IN FORTH…..the average person doesn’t even know the difference.
    Cheers
    Andrew

  17. Melitta
    Melitta January 17, 2011 at 3:52 pm | | Reply

    Thanks for publishing this guest post by Alan Shanley. Blame and shame certainly don’t make anything better, only worse. Type 2 diabetes is a incredibly complex disease, and much research needs to be done. That said, I do think there is reason to give different names to the two different diseases (although frankly I don’t think this will happen). Type 1 is a distinctly different disease, so why shouldn’t it have a different name? Much confusion arises especially for those of us who acquired Type 1 diabetes as adults, as Amy T and I did. Doctors still assume that an adult presenting with the classic symptoms of diabetes has Type 2 diabetes, because many doctors still believe the myth that Type 1 diabetes is a childhood disease. I believe that if Type 1 had its own set of diagnostic criteria and treatment, ALL people with Type 1 would receive better care and people who are being misdiagnosed today might have a better chance for a correct diagnosis and appropriate treatment. And if all those with adult-onset Type 1 diabetes (including LADA) are correctly included in the statistics for Type 1, then Type 1 represents 15-25% of all cases of diabetes, not the oft-quoted 10%. (And MODY is probably represents more than 2% of the diabetic population, and that is a whole different complex issue). Again, thanks for the guest post.

  18. Elizabeth
    Elizabeth January 17, 2011 at 4:39 pm | | Reply

    Even as a type 1, I am SO with you on this!

    I thought for 2 or 3 days that I was type 2. The initial test my doctor did was just simple blood glucose, then she called me back in for more tests to confirm diabetes, determine the type, and make sure there were no other serious immediate issues that comes along with untreated diabetes.

    So yeah, she had told me we needed to confirm the type, but she and I were both assuming it was type 2. I was 30 and overweight. I could argue now that 30 is young for type 2 and I wasn’t excessively overweight, but still, I knew the chance of type 1 are so low, and assumed it must be even lower for an adult. And type 2 is so common.

    I was embarrassed and ashamed, because I felt like this was something I must have “done to myself.” How wrong it is that a person should be made to feel that way when also dealing with the diagnosis of a chronic disease! And I’ve learned so much since then that make me realize that self-blame was misplaced. There are fit athletes who are diagnosed with type 2, for goodness sake! Obesity is only one of many factors, and genetics plays a bigger role than any of the rest. Instead of feeling guilty, I should have simply been thinking, “OK, having diabetes means it’s even more important to get active and eat right, because that will make easier to manage and reduce the related risks.” A completely different attitude than what the commercials and talk shows teach us!

  19. Niko
    Niko January 17, 2011 at 10:52 pm | | Reply

    Natalie, your comment “I am a long-term diabetic (20 years), and there is no way mere diet and exercise would get me off insulin. In that respect, I am more like a Type 1 (which is how my doc has me down)” demonstrates that neither you nor your doctor has any understanding of type 1. You either have it (and it must be diagnosed through tests) or you don’t. If your doctor is labelling you a type 1 simply because you need insulin, this only adds weight to the argument that we need different names for the two conditions. Type 2s don’t progress to type 1 when they need insulin.

  20. Natalie Sera
    Natalie Sera January 18, 2011 at 5:44 am | | Reply

    At the time I was diagnosed, there were no easily available antibody or c-peptide tests, so all the doc had to go on were the fact that the sulfonylureas (the only oral available at the time) didn’t work, (arguing against a diagnosis of classic Type 2) and a small dose of insulin did. Also, I didn’t say I WAS Type 1, only that treatment protocols for Type 2 in the hospital didn’t work for me, whereas Type 1 protocols did. I’m smart enough to know I’m Type Weird — I don’t fit smoothly into either box, but I AM going to go for the treatments that work the best for me, which in this case is insulin. And I trust my doc to treat me for what I have, since he has far more experience than you do — he’s a Type 1 on a pump himself.

  21. Kendra
    Kendra January 20, 2011 at 9:51 pm | | Reply

    Niko, have you read Dan Hurley’s book (Diabetes Rising)? There is some suggestion of a correlation between weight and Type 1 which really surprised me (although I can’t say I’m convinced).

  22. Mary
    Mary January 21, 2011 at 8:00 am | | Reply

    No one here has yet to mention the food industry’s role here. In my opinion, America’s weight problems (and hence, T2D problems) stem from the food industry’s tricks of the trade to make a buck regardless of who they poison or even kill. Think about it. We spend more than any other country on healthcare but are one of the sickest nations. You would think that would be the opposite. The difference is America has a capitalist food industry allowed to sell us lies and poisons with very little regulation. Do I promote more regulations to promote better health? Maybe, but I prefer that Americans become educated and demand more from the food industry. Think about an improvised family who has very limited income, education, and are genetically predisposed for T2D. How are they going to spend their money on food? They’re going to buy the cheapest, highest-calorie foods. And who can blame them if they’re overweight and end up with T2D? The American food industry should be the ones put to shame here, not T2Ds. For those skeptics of this theory, I suggest you start reading and investigating what we as Americans are allowed to eat by the FDA. It’s absolutely shocking and sickening. BTW- I’m a 20 year T1D.

  23. Natalie Sera
    Natalie Sera January 21, 2011 at 2:43 pm | | Reply

    I think it’s far more complicated than just the food industry. Many if not most Type 2′s complain of being hungry ALL the time, and when food is plentiful, hungry people eat. In ancient times, there wasn’t enough food for most people, but there WERE fat people, and there WERE Type 2 diabetics (Type 2 was described in India about 3000 years ago).
    I know we’re a LONG way from understanding Type 2, so at the moment, it behooves us not to point the finger of blame ANYWHERE — not the victims, not the food industry, not the government, nowhere.
    And we shouldn’t believe falsehoods so easily, either — just lose weight and exercise and it will go away! Well, for some, in the early stages, it will go into remission, but it is never cured. For others, especially long-term Type 2′s, you can get thin as a rail, and it doesn’t go away. Or even go into remission — the lost beta cells are gone.
    And another largely unknown tidbit — I just read a study on adolescent Type 1′s, and guess what — they have insulin resistance! Wait!! I thought that was Type 2!! Well, no, it isn’t — there is more commonality than difference between the two if you’re willing to look.

  24. Alan Shanley
    Alan Shanley January 21, 2011 at 3:04 pm | | Reply

    Thanks for all the comments people.

    We’ve gone the full circle. Just a couple of thoughts on the final comment.

    “America’s weight problems (and hence, T2D problems)” is exactly the sort of comment which reinforces the automatic link in the public mind between type 2 and obesity; almost as bad as the terrible term diabesity. Correlation is not causation.

    For good nutrition, not necessarily related to diabetes, I agree with the concept of choosing foods that owe more to the farmer than to the factory for their production. I wrote more on that here: http://loraldiabetes.blogspot.com/2009/09/food-farmers-and-factories.html

    But I’ll stay out of the argument on America’s food industry, HFCS and all that. Although that may have some validity locally for Americans, it tends to ignore the fact that the USA food industry has little effect on the dramatically increasing diagnosis numbers for type 2 diabetes around the world. Browse through some of the statistics for some sobering reading: http://www.who.int/diabetes/facts/world_figures/en/index.html

    Thanks again.

    Cheers, Alan

  25. Patti Evans
    Patti Evans January 28, 2011 at 3:53 am | | Reply

    In our forum (diabetes-support.org.uk) we made a conscious decision not to have separate sections for T1s and T2s. OK, occasionally it causes a bit of confusion, mainly around diet, but on the whole it means we all learn from each other all the time. As far as we are concerned we all have diabetes regardless of type. We all acknowledge that both types are serious and neither has been caused by ourselves. It’s also obvious that there are many mis-diagnoses around! Particularly when that diagnosis has been by means of someone’s age/weight without any further tests being undertaken.

  26. Aimee Hamilton D.C.
    Aimee Hamilton D.C. February 2, 2011 at 2:38 pm | | Reply

    I have the opportunity to work with a lot of people that have type 2 diabetes. The thing that makes me sad is that it is so possible help people with type 2 diabetes reverse their condition. The food guide pyramid (or the new version of it) and lots of exercise are obviously not the answer. We’ve been going down that path for decades with very little success. The way to help someone with type 2 is to get to the source of the problem.

    The adrenal glands, the liver, the thyroid, the pancreas, and the digestive system must be tested and evaluated by a qualified person that can show you where your problems are. When your doctor works at this level amazing changes begin to happen.

    It’s time to stop hoping that a pill will fix our ills. We need to focus on nutrition and nutrients that our body can use to rebuild itself. That’s not to say that we need a bunch of miracle supplements. That doesn’t work either.

    The answers are out there for people with type 2, but they are not going to come from the system that is profiting from the way things are right now. Why would they want to change the profit structure they have set up right now?

  27. Jen M
    Jen M February 22, 2014 at 1:27 pm | | Reply

    Well I have been living with type 1 diabetes for almost 45 years. I have no sympathy for those diagnosed with type 2 diabetes. Reality check, as most have no idea of diet or any concept of what portion size is. Stop crying the so-called ‘blues’, Starting eating healthy and get off your ass and get out and most of all – GET ACTIVE…

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