I worked at a patient program the other night for my company, and shared information about our two medications. One medicine we make is for Type 2 diabetes, the other can be used in both Type 1 and Type 2s. The presentation that night was about healthy cooking tips, and the audience furiously jotted down notes as nutritionists and chefs prepared tasty and healthy dishes from the stage. During the breaks between presentations, patients came by the vendor tables to learn more about our products. In order to provide the appropriate information to patients, I’d ask if they were a Type 1 or Type 2.
And this is the part where I got truly surprised. I was shocked at 1.) the number of Type 2s who did not know what kind of diabetes they had (all the Type 1s responded quickly and confidently), and 2) How many of the Type 2s said they “weren’t a Type 1 yet because they weren’t on insulin.”
Huh? Last I checked, types of diabetes were defined by their epidemiology, not their medications. Yes, it’s true that all Type 1s have to take insulin because we don’t make it, but that doesn’t define why we’re Type 1s. We’re Type 1s because we have an autoimmune disease that stops our pancreas from making insulin. Period. Type 2 diabetes follows a different pathology altogether. True, Type 2 is a degenerative disease, and many with it will “end up” on insulin because their beta cells eventually putter out completely, it’s still different from the autoimmune attacks of Type 1s. I’ve always felt that the two types need different names, and this misnomer that the disease is defined by what medication you require just reinforces the fact. That said, I understand that some make the case that since the poor outcomes of diabetes of all types can be the same, they really are just “variations” of the same disease. I completely disagree, but I can see how some people go there.
What I can’t understand is how so many patients don’t know what kind of diabetes they have. And I think the blame needs to be shared here across health care providers, the patients, and media/stereotypes/damn Steel Magnolias again. The overwhelming number of diabetes cases in the U.S. (about 95% in fact) are Type 2, which means that if you generally use the term diabetes, you’re likely to referring to a Type 2 case. But this sweeping generalization is where hurtful stereotypes come in to play – for both groups of patients. Type 2s get cornered into thinking that going on insulin means they have “the bad kind” of diabetes, and Type 1s get asked what they did so badly that they had to go on “the needle.” The confusion around the differences is tough on patients, because it perpetuates the untruths abounding about both types of the disease.
And here’s the part where I don’t know what to do about it. Which I suppose is why I’m on this blog complaining about it. It frustrates the heck out of me that there’s not enough education about a disease that 25 MILLION people in the U.S. have for them to understand which Type they have. And it makes me feel defensive about my bum pancreas and super-charged auto-immune capabilities. I did my best to educate folks the other night, but at the end of the day, what we’re doing for diabetes education as a country isn’t enough. And if we’re not careful, we’ll literally sink this nation with the costs of simply not knowing enough.
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Sign in nowI think you’ve made a good start by getting the word out there. I always known the difference between the two types but I didn’t know how differently the two were treated. Education is the first step in any battle and surely if more if people were more educated in know their own diagnosis the damage done by the disease would drop rapidly. Thank you for shedding some light.
I think that diabetes education is extrememly important. I also think that many folks who are diagnosed (all types) don’t get any, much less enough education at the time of their dx. I read everything I can get my hands on and consider myself well informed but every day I learn something new – often on this very blog. Thanks.
If you approach the question using immediate treatment and cost, it, at first, doesn’t matter what type you have. Type 1s can start out not needing mealtime insulin at first (me) and doctors only focus on the problem at hand without introducing unneeded expense and worry for the patient. Not everyone has healthcare. If the patient can be treated with basal insulin and metformin, great. When that doesn’t work anymore, doctors will send you to endocrinologists to get it figured out.
Your last comment is right on. They’re facing an apocalypse and aren’t well-advised enough to even realize it!
I had a major battle with the Dept of Defense because they fail to recognize Type-1 as an autoimmine condition rendering the pancreas inoperable for insulin production and bloodsugar monitoring. Instead they equate it around activity restrictions and other criteria pointed toward t-2. This leaves service members diagnosed with t-1 who must get out unfailry rated and in many cases loosing coverage for medical retirement. If the disease had different names they could clearly delineate between the two and not leave it up to subjective criteria of which we all know t-1 is in no way subjective rather medically diagnosable and un-reversable. Unfortunaly many of your servicemenbers are being diagnosed at a high rate for t-1 while on active duty then not recieveing the proper care when they are forced out of the military due to the subjective language in the rating criteria. I think there should certainly be two different names for the two very different conditions.
I’m not sure where the blame lies, entirely. I agree that some providers don’t provide enough information on this disease, yes. But I also put the responsibility in the patient’s hands. We, in the end, are responsible for own well-being. We have to be our own advocates, take the initiative. I can’t imagine getting a diagnosis- of anything- and not asking a million questions, learning everything I can, researching online or in the library, talking to people. My endo told me last summer that the majority of his diabetic patients are not interested in any information or programs that he offers. Many choose not to complete the diabetic education classes, even when they are offered at no cost. He mentioned this to me because he said I DO take the initiative, and complimented me on it. I believe that when you are diagnosed with a disease (and I have been diagnosed with 3 auto-immune diseases), it becomes your responsibility to learn everything you can about it. I’m sure that’s not a popular view, but that’s my feeling on it.–Nikki, Type 1.