Lack of awareness


(Cathleen) #1

I know this is a common frustration, but I was wondering if anyone had any helpful catch-phrases that they use when speaking with a person who does not know the difference between Type 1 and Type 2 Diabetes? As my daughter is newly diagnosed, I am sometimes sharing with others and am surprised to find the widespread lack of awareness, with comments such as “Has Eva gained a lot of weight since I last saw her?” “I thought you ate healthy!” or “I/my grandmother/aunt, etc. has diabetes, too.” Depending on how interested or concerned the person is, I sometimes take the time to discuss, but I don’t always want to deliver a educational speech to clarify!


(Andy) #2

Good luck.
I’ve given up explaining the difference. Besides, I shouldn’t have to explain the intracacies of a condition I do not posess. I’m not being a dick or anything about it, I just came to the realization that my explanations were sounding more like apologies.
I’m a type 1 diabetic. If someone wants to discuss Type 2 diabetes, perhaps they should consult a Type 2 diabetic. I liken it to being asked to explain what childbirth feels like. I don’t know. Ask someone who has been thru it.


(Abby) #3

Sigh. I wish there was a concrete answer to this dilemma. Honestly I base my response on the person to whom I’m talking; if it’s someone I spend a lot of time with or someone who’s involved in my life, I usually find a polite way to correct what they’re saying (for example, if they ask about weight gain, I say, “Type 1 Diabetes actually isn’t related to weight. Maybe you’re thinking of Type 2?”). If it’s someone who I don’t interact with frequently, I’ll let it slide. I completely understand that it’s frustrating to hear the same misguided comments over and over; however, I try to remind myself that these people aren’t trying to be unkind or difficult–they’re genuinely misinformed. I think a lot of us remember a time when we were so “blissfully ignorant” and didn’t have to know about T1D–I’m sure if I’d met a PWD before I was diagnosed, I would have had similar misconceptions.


(joe) #4

you guys are all really very nice. I usually close my mouth, do an “about face”, and walk away. My Rule #1 for staying happy, don’t try to teach everyone.


(Dennis J. Dacey, pwD) #5

Hi Cathleen @cminer, I read your post this morning and decided to wait until I was relaxed and had time to respond. since then you have had a couple of valuable insights. Like Abby @bookwormnerd13, for me it depends upon whom I may be addressing.

I just spent the afternoon in a hospital setting while going through pre-surgical testing [the second surgery in two weeks] and had the opportunity to further the education of a couple of medical professionals; with medical professionals, my education is more direct and critical. Fro instance, I identify myself as “a person with autoimmune-onset diabetes”, and when necessary as “not-life-style diabetes”. I go on to mention that autoimmune or TypeOne is managed quite differently than most of the half dozen other conditions with a common symptom - specifically “diabetes mellitus” which is quite simply the Greek words for “Passing sweet water”. Then say something like "… a bunch of DIFFERENT conditions are named for a common symptom; then mention that up until 1920, and in some places much later that diabetes was diagnosed by tasting urine. Today a very interesting discussion followed.

When uninformed comments are made by non medical professionals I take more laid-back approach and listen to what the speaker has as perception of diabetes. Then just mention that I have autoimmune onset diabetes and I didn’t need to do anything to cause it - and NO, I didn’t eat too much sugar or too many cookies and, NO, I was never a fatso. TypeOne has nothing to do with how I have lived.

When someone is “hostile”, I just ignore that person and change the subject or walk away. I agree with you Cathleen, if the person wants to discuss and appears interested, I will try to “educate” to the degree that that person is interested. At the gym, I have had that opportunity a few times when I’ve paused at a machine to pull out my CGM reader or when necessary my meter to do a BG check.


(Cathleen) #6

Andy, I like this thought. Type 2 is just not my business at this point! Thanks…


(Cathleen) #7

Abby, as always, thank you for your thoughtful response. Yes, I remember fairly recently being only somewhat informed of the complexities of T1D. “Maybe you’re thinking of Type 2?” That’s a good phrase to keep in the pocket!


(Cathleen) #8

Joe, thank you for sharing happiness rule #1! Good boundaries…


(Cathleen) #9

Dennis, this is interesting medical history. I’m glad we no longer have to rely on the taste test! Yes, certainly more surprising when a medical professional is not aware. Our PCP’s office didn’t respond at all to Eva’s high fasting glucose until I pointed it out, knowing that she already had Celiac. A nurse said it was not a concern and that “at her age and weight” we “didn’t need to be concerned about diabetes.” I had to assertively request further testing and went to a specialist (who was immediately concerned.)
I like the terms “autoimmune-onset diabetes” and “not-lifestyle diabetes”…putting those in my pocket, too!
I hope your surgeries are going smoothly and wish you good healing.


(Nancy) #10

Hi @cminer Cathleen - I can only echo what my fellow, esteemed life-long T1s have already contributed. I totally enjoy correcting misconceptions, but I know it is a loosing battle because the public still thinks of it as “sugar diabetes”. I wish I had a trite phrase to share with you.

However, I am on a 1-woman rant to divorce T1 and T2. T2 has such a bad rep as a lifestyle-induced disease. Change T1 to another name! Change T2 to another name! Because of the generally negative outcomes of poorly, negatively, or miss-controlled T2, we T1s can’t get life insurance, long-term care insurance, or mortgage insurance (did you know?) We’re lumped into a pool that negatively associates our mortality. @Dennis Dennis is AMAZING, and he is not the only long-term T1 on this site with few health affects attributed directly to diabetes. Yes, physiologically, T1 and T2 are similar, and control for either (or both) can be achieved with patience and simply attention. But yeah, another label for either would eliminate the frankly stupid comments.

I wish I could adopt @bookwormnerd13 Abby and @AJZimmerman Andy’s approach.

To your good health,

Nancy


(Cathleen) #11

Thanks, Nancy. Wow, I didn’t know about the insurance problems, how awful. And, yes the names and labels we use do cause confusion, I’d love to see them change. Diagnostic labels in all areas of health often are revised.


(ksannie) #12

When I was diagnosed myself (in college), I had never heard of diabetes. It was not so common then. But I have not run into a lot of people who think diabetes is only in people who are overweight. When I was working, I often was told who were the other diabetics in the department. There was another thin person like myself, and he was a Type 2. I also have a cousin who is Type 2 who is thin, and has Type 2 due to chemical exposure in the army during the Vietnam War. I also had one colleague with Type 1 who was obese. So really, I consider that weight has not much to do with the whole thing. Anyone who is overweight, whether they are Type 1 or 2 or neither, needs to lose weight. It is a separate issue in my books.


(Dennis J. Dacey, pwD) #13

Hi Annie @ksannie, I like how you responded to this post. People with diabetes, no matter which of the half dozen conditions called “DM”, can offer support to one another. Back in the early 1960’s a fellow worker with T2 showed me a new-fangled way to check for sugar in urine; instead of me needing to carry a test tube and dropper [which I didn’t], I could now use a piece of “Testape” and just pee on it - it was far from being ‘accurate’ but would tip me off that my BG must be getting close to 350 mg/dl.
One of my younger brothers also had “Vietnam Diabetes” which the VA refused to recognize until April after most affected by this horrible condition [worse than T1D] had died. Seventy-six percent of the of the men my brother commanded. Army Corp of Engineers, were affected by this form of diabetes.


(tored) #14

@cminer, the difference between a T1 and T2 is confusing enough without trying to diagnose it! Make it simple - a simple catch phrase would be - Only the person’s, who has T1 or T2, doctor knows their number for sure, because the difference between a T1 or T2 diabetic depends on the insulin put out by their pancreas. Nobody knows that number, only their doctor would know for sure. That should quiet them down!


(ksannie) #15

I used the test tubes and later testape for sugars when I was in my twenties. I did not have a meter until 1985, 15 years after my diagnosis. But at the time I was told that having a slightly orange result in the urine test meant my sugar was over 180. The doctor then did not like my keeping my sugar from getting that high until I became pregnant. I had two children in the 1970’s and the doctor knew that tighter control was best. One thing they would never admit, though, was that absolutely no one ever knew what their true renal threshold for sugar was. It could have been 150 or it could have been 250, and there was no way to know. I was so grateful to get my first meter!
My cousin with Vietnam diabetes receives his health care free from the VA, and they admitted after he had had diabetes for a number of years that his chemical exposure was the cause. He has been lucky. And although he has Type 2, he has been on insulin since he was first diagnosed. I have always wondered whether putting all diabetics on injections from the start would improve results. The Type 2’s I have known who started with Metformin instead always had stomach issues for several weeks before being able to keep from feeling nauseous or actually vomiting. I know they figure it is a lot easier than needles, but I don’t think so. And I have often found they feel their diabetes is less serious than mine. To the contrary, it is worse, in my opinion.


(Victoria) #16

With a recently diagnosed 11 year old, I am glad to educate those who care and glad to shame those for not knowing and asking inappropriate questions and our 11 year old does the same. In this day and age with the internet it is very easy for those who want to know, teachers, family, friends, etc. to know what they should. Share your frustration every day.


(Daniel) #17

In my experience this disease takes a village and, even though it is frustrating, it is important to educate those who do not understand and who want too. The more advocates the better!

My two minute diabetes explanation is, " Food brings your sugar up, insulin brings you down and I am constantly trying to stay in between a range of 100-150. You prick your finger to figure out what your sugar is and take shots every time you eat. When you give too much insulin you are “low” and feel dizzy and can pass out (short term complications) when you don’t give enough insulin you go high and become aggressive and moody (in my case at least) and this has long term complications."

Hope this helps and best of luck!


(Melissa) #18

My son was diagnosed at 15 with T1, with absolutely no family history of Diabetes. But the rest of us all have Thyroid issues. I get irritated when people talk about T1 like it was avoidable… my son is an athlete and has always been in great shape. When people ask us… we tell them that T1 is genetic and not lifestyle based.


(jasontanner) #19

Ok, so… we have 2 boys diagnosed with T1D at ages 7 and 13 in 2016. We went through all the same experiences and emotions. There isn’t a lot you can do about random people and their ignorance, other than accept it.

However, for people you will interact with regularly, there is plenty you can do. For my youngest, each of the past 2 years, I have gone to his classroom as a special guest to talk to them about T1D. Explained the science of it, explained that it’s not his fault and that it’s not contagious and that he’s not going to die. Fortunately, my youngest isn’t shy about the disease, so he took the opportunity to also show his pump and CGM and explain what they do.

Additionally, each of the last 2 summers, we have set up a meeting with ALL of their teachers ahead of the start of school, to give a similar, but more technical explanation. This included WHY they might hear beeping and WHY they might look at their phones in class to check their BG.

Finally, my youngest had a Facebook “blog” called From Kellen’s View, where he talks about his experiences dealing with T1D and celiac, and has even demonstrated inserting devices, etc.

There are positive ways to educate people without getting down on them. We were also ignorant before all this, so we try not to fault others.


(Linda) #20

Lots of good advice here! And might I say that I am shocked to hear that the pediatrician was not concerned! Shame on them!!! And good for you following thru!!!

Anyway, I actually enjoy educating if people are interested. One thing that always seems to put a light bulb on in peoples heads is “It used to be traditionally called Juvenile Diabetes”. Most people go Ohhhhhh. Then I take it from there explaining how I don’t make any insulin because my body is killing that part of my pancreas (auto immune). Many people don’t know that term auto-immune, but if you mention other common auto-immune diseases, then again a light goes on. All the best,
Linda