How does the generalization of "diabetes" make you feel?

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Permalink Reply by Travis Grubbs on August 6, 2007 at 4:54am

Manny:

I think the use of the generic label "Diabetes" is common, and without prejuduice. Even our TV commercials tend to use the "Diabetes" or "Diabetic" label. without differentiating between the two. But it is not limited to our two conditions. I can recall numerous times when I was told that some one had cancer, or and individual told me that they had cancer, without disclosing the particular type. I, like you, disclose my particular condition.

I think that is the best way to educate others, and at times has led to some serious questions and discussions. Since I am Type 2, this has given me several opportunities to educate others, with bulging waste lines, about Type 2 diabetes.

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Permalink Reply by Alison on August 6, 2007 at 5:15am

It brings up a negative reaction as a parent, since I have other parents say "my God what did you feed him" when they see that my son has diabetes (he wears a big medical i.d. bracelet that says type 1, it's hard to find small bracelets for babies/toddlers). When if they knew me they'd know that he has a great diet, better than most children-although now he does get sugary stuff for lows. With the media it's always related to the obesity epidimic too, I think if they would show what the signs are of type 1, more parents and doctors would recognize it. Tony's pedi didn't even realize it was diabetes when he was in diabetic ketoacidosis!

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Permalink Reply by Chloe on August 6, 2007 at 5:58am

I think since more people are being diagnosed LADA or Type 1 at an older age, distinction is especially important. For instance, I had an inner ear infection, and then one day after receiving prednisone had all the symptoms of DKA. Nausea, uncontrolled vomiting, stomach pain, severe dehydration, and labor like breathing. I was in the hospital for a week for pancreatitis with no known cause. The interesting thing was that they did not check my blood sugar once, the entire time I was there. Not once. The endocrinologist got my medical records to confirm. It was only afterward at a followup, when I was severly symptomatic that my internist ran a fasting blood sugar that came up in the diabetic range. I just wonder, if I had been either younger, or overweight if they would have checked me in the ER. No one thinks about diabetes in a slim young adult.

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Permalink Reply by Libby on August 6, 2007 at 6:44am

Another problem that I see in not making a distinction between Type 1 and Type 2 is that it makes it difficult to diagnose LADA in the early stages. My fasting and 2 hour blood sugars were and continue to be in the normal range. Most doctors only use those tests and I was told by my first endo that I didn't have a problem. I was lucky to have a nurse practitioner who thought an A1C of 7.2 was way too high for a thin, active, otherwise healthy adult. She had me start testing and I found that my one hour numbers were up in the 180s, (hence the A1C) and we eventually did the antibody tests. To continue my atypical profile I am negative for GAD antibodies but just barely positive for islet cells so that confirmed the diagnosis. I get frustrated when I hear friends and coworkers tell me they have slightly high A1Cs and are not testing but just being told to come back in a year. If they have LADA, that year of higher BG may mean they burn out their remaining Beta cells. One friend at work has an autoimmune disease and I asked about BG. She said she has the fasting test every year and it is normal. However, she once had a random test after eating yogurt and her BG was over 200. I suggested she get an A1C but she said she didn't need to since this was 3 years ago and her fasting tests have been normal ever since. If doctors continue to test for and treat every adult as a Type 2 then people with LADA will miss the opportunity that the slow onset allows to preserve pancreas function.

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Permalink Reply by Ross on August 6, 2007 at 6:09am

A lot of parents I speak to in the UK say that their T1 children get bullied at school because of the perceived link between obesity and diabetes ("Obesity Epdiemic" - like it's catching - and "Diabetes Epidemic" being more or less interchangeable in the minds of some tabloid proof-writers). Tie these reports of bullying to the terrifying reports of girls using their T1 diabetes as a weight-loss tool (i.e. avoiding the injections): it would not surprise me in the least if the two are connected. I wonder whether the change in descriptive language may be in some way to blame: the phrase "insulin-dependent diabetes" is no longer de rigueur, owing I would guess to the negative connotations inherent in dependence. But the language of "Type 1" and "Type 2" makes it sound as if the two conditions differ only in degree. It is hardly surprising that the public and news reporters are confused.

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Permalink Reply by Jenny on August 6, 2007 at 3:24pm

LJ,

It is utter nonsense that "90% of Type 2" can be prevented or reversed. It is not based on any solid mainstream research. In fact, the research shows just the opposite. Lean relatives of people with Type 2 show abnormalities in both insulin resistance and mitochondrial function decades before they become overweight or develop diabetes. The obesity that goes along with Type 2 may very well be the RESULT, not the cause, of diabetes.

This attitude is repeated ad nauseam in the media and stems from the social acceptance of fat bashing in our society and the desire to believe that fat people suffer an illness they deserve.

I was misdiagnosed as Type 2 for many years and only recently discovered I have a different form of diabetes, but one thing my years of being part of the Type 2 community did for me was give me a huge respect for the hardworking, long suffering community of people online who have Type 2 and how hard they work to maintain their health despite the rotten medical treatment they get. It also get me researching the real causes of Type 2. I've summarized what medical research has found about the REAL CAUSES OF TYPE 2 DIABETES on this page http://www.phlaunt.com/diabetes/14046739.php

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Permalink Reply by Scott Strumello on August 6, 2007 at 2:01pm

As you might guess, I have an opinion on this topic. I wrote about it in my blog last December, when the December 2006 edition of Men's Health featured an article entitled "The Cure for Diabetes" which ruffled the feathers of some of the authorities at the ADA enough so they felt compelled to write a letter to editor of Men's Health. In their letter, the ADA actually wrote that the Men's Health "article glosses over the difference between type 1 and type 2 ..."

What really annoyed me was not the fact that someone called attention to the issue of confusion, but the fact that the American Diabetes Association (ADA) was making the fuss because they didn't like the fact that Men's Health was recommending a low-carb diet to avoid type 2 diabetes. Men's Health made it very clear they were referring to type 2 diabetes (unlike many publications). The irony, was that the ADA is, in my opinion, perhaps the single worst offender of glossing over the differences between the two forms of diabetes.

As an organization, the ADA routinely likes to promote all the progress being made towards a cure (for type 1), much of which is not funded by the ADA but by JDRF, while simultaneously marginalizing the needs of the type 1 audience. Let's face it, the ADA sees the tremendous growth in type 2 diabetes and largely leaves type 1 advocacy, funding and research to organizations like JDRF in terms of prioritization. The most notable example of this is the tremendous confusion between type 1 and type 2 diabetes which was created by the ADA itself. In 2003, the ADA recommended that the name "insulin-dependent diabetes" be abandoned in favor of the name type 1. Their rationale for this was as follows that its "particularly important to move away from a system that appears to base the classification of the disease, in large part, on the type of pharmacological treatment used in its management toward a system based on disease etiology where possible."

Does the name "type 1" classify the disease based on etiology? Certainly not. The ADA could have clarified the issue by formally renaming insulin-dependent diabetes as "immune-mediated diabetes" and type 2 diabetes as "insulin-resistance mediated diabetes," but has instead created even more confusion by giving them confusing "type" numbers instead of distinct names truly based on etiology. I should note that other similar conditions do not have this problem. For example, although Ulcerative Colitis and Crohn's Disease are both inflamatory bowel diseases, few people ever confuse them as they routinely do with type 1 and type 2 diabetes because their names are very clear and distinct from one another.

In May 2006, The New York Times highlighted the growing issue of confusion between type 1 and type 2 diabetes in its article "Beyond 'I'm a Diabetic,' Little Common Ground" calling attention to the fact that type 1 diabetes has achieved much more fund-raising success than type 2 diabetes, but also noting the growing resentment among many with type 1 from being seen by many as having a "lifestyle" disease which somehow could have been prevented by making better eating and exercise choices.

But I do not blame the media for this confusion, I blame the ADA.

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Permalink Reply by Chloe on August 7, 2007 at 6:30am

The names have always been misleading as far as I'm concerned. Technically everyone living is "insulin-dependent", it's just that not all of us make our own.

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Permalink Reply by Progress Trumps Perfection on August 6, 2007 at 2:14pm

As a late onset type 1, it makes me feel judged and not only labeled (which is wrong too), but mislabeled. It also contributed to a lot of confusion surrounding my diagnosis. Being told by my GP that he had "never seen a case like mine" (normal weight, active, onset at age 27, etc.) was very isolating and led to a form of denial on my part that I could diet and exercise the diabetes away.

It's one thing to have to educate someone about a condition that they know very little about when they are aware of their lack of knowledge. In that case, I think most people are like a dry sponge and can soak up some true information. But it is doubly hard to have to try to "undo" the misconceptions that people are convinced are true because they are constantly reinforced by the media. They are sponges saturated with the "obesity causes diabetes" mantra, and sometimes they just can't absorb the truth when we explain that is not always the case.

Wheter type 1 or type 2, the thought that anyone purposely brings diabetes upon themselves or that they "deserve it" because they ate cake, are too fat, or too thin, or whatever, is just wrong.

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Permalink Reply by Travis Grubbs on August 6, 2007 at 2:43pm

"Wheter type 1 or type 2, the thought that anyone purposely brings diabetes upon themselves or that they "deserve it" because they ate cake, are too fat, or too thin, or whatever, is just wrong."

Thank you PTP. After being diagnosed Type 2 I spent a lot of time blaming myself. It was later that I realized that my father was not only physically fit, but was on active duty in the U.S. Air Force when he was diagnosed as Type 2. My doctor says that genetics also increase the risk factor for Type 2. Some times I feel that their is a bias toward Type 2s, based on some of the comments I have read on TuDiabetes. I hope these comments are unintentional, or that I am just wrong.

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Permalink Reply by Libby on August 6, 2007 at 3:12pm

Travis,
I really appreciate your perspective as a Type 2 and hope you realize that the comments are not intended to be hurtful. I think the main reason we need to distinguish between the two types is because the treatment needs to be different. For those of us with LADA, we can lose valuable time, and Beta cells, by trying to manage our disease through diet and exercise alone. Or we can be given oral drugs that damage the pancreas since insulin resistance is not the cause. Having said that, I agree with Jenny when I think most Type 2s would benefit from the treatment options offered to Type 1s. As I tell my first graders: we are all different and we are all alike. :-)

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Permalink Reply by Kimberly on August 6, 2007 at 2:58pm

My internist also had "never seen someone like me with Type 2" - that's b/c I had Type 1, but I was astonished that she didn't understand a 32-year old, healthy, thin, active woman could get Type 1. It's kind of refreshing to know she wasn't the only clueless doc out there.

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