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From Abby: Mind the Gap.

Working as a healthcare professional and a person with diabetes, Abby has seen diabetes from, and on, all sides.  Today, she's writing about how her view on diabetes has changed in the last few years, and how it shapes her advocacy efforts.

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Mind it!!So as I work more with people who have type 2 diabetes, and as I grow older and wiser, with my "juvenile diabetes" not staying in it's juvenile place and insisting on tagging along into adulthood, I think I've come up with a theory.

There is a gap closure between type 1 diabetes and type 2 diabetes with age.

When you are a kid with diabetes, everyone assumes you have type 1. Nobody really questions it, especially under the age of 15. Or at least in my life, that was the case. I got the occasional "oh my cat/Grampa/uncle has/had that" blah blah, but for the most part, people knew that my kind of diabetes was "genetic" or whatever. Once I entered college, things got a little grey, though. I got a lot of, "Oh ... which kind of diabetes?" or, "How long have you had it?" or ,"Wait, can you eat that candy bar?".

Then I became a real life grown-up. I wear dressy pants to work and I have a badge that I swipe in and I pay my rent with checks (those silly things that debit cards replaced). I. Am. An. Adult. (#gross). This new status also came with a lot of really annoying and not necessarily accurate "but you're not fat" types of comments when my dead organ status was revealed. I'm sure most of you can relate so far.

Here is where my theory comes in. When I was younger, I felt absolutely no connection with the type 2 world. It is a different disease, generally diagnosed at a different life stage, requires very different treatment and can sometimes be delayed with good health habits. Early stages of type 2 are pretty much nothing like type 1, and as a child, that's all I could see. Even as a teenager, and frankly until about two years ago, this is what I thought. Until I had to start defending myself against ugly, judgmental comments. Now I understand. Now I want to fight for all diabetes to be treated fairly.

I know plenty of people with type 1 who are very overweight, eat terrible foods and don't work out. I know that these people can take insulin and keep fairly stable blood sugars and not feel guilty about it. I know an equal number of people with type 2 who eat well, work out, are at an average weight, and still need insulin - probably a ton of it. This case bears a lot of guilt that they (according to social commentary), "could have worked out more and stayed off of insulin" so on top of the social judgement there is a huge personal guilt factor happening too ... or so I'm told.

So now that I'm an adult, I am judged for carrying the diagnosis of diabetes, and people with type 2 are judged for being on insulin. While they are still not the same disease, are not medically treated the same, and have entirely different influencing factors, I think we need to remember that those stereotypes hurt everyone. It took me about thirteen years to realize this, but I wish I had learned it earlier.

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Has your perception of diabetes changed over the years?  Do you think society's views have changed?

Comments

I am a type 1 that is overweight. I exercise, I eat well, but over the years, through fertility drug treatments and a crappy metabolism, I've gained weight. EVERYONE assumes I am Type 2 because I am overweight, and an adult. Then when I tell them I'm Type 1, and even explain the difference, they still assume (I see the wheels turning and the disbelieving looks, trust me) that I got diabetes because I was fat. (By the way, I WASN'T fat by any stretch when I was diagnosed at age 21.) It's very hurtful, and only exacerbates feelings of helplessness about having this disease and dealing with the tolls it is taking on my body. I am working hard and making a concerted effort to lose weight and get in better shape. But that's a full time job in itself, on top of dealing with diabetes 24/7. I also have my daily job that pays the bills, a husband a toddler, and a dog. Sometimes I feel burnt out, and at those times, I really can't abide someone looking down their nose at me and assuming I am sick because it's my own fault. All that to say: I think society has a LONG way to go in their understanding of diabetes. And for those people who never "get it" -screw them. (Sorry, bad mood attacks today.)

As a PWD T2 (Man, I love to talk in code) I sincerely appreciate your comments. I was diagnosed over 15 years ago. I was not overweight, not even a little. I was extremely active, in the gym 4 to 5 times a week. Over the years (I'm 8 days away from being 69) I have put on a few pounds(but I'm not obese) and am not as active. (But not sedentary) I am now on insulin plus oral meds but not because I have not endeavored to "do right." My pancreas has slowly sailed off into the sunset. Sometimes "stuff" just happens.

Great post Abby!
My perceptions have changed too. I catch myself "qualifying" my diabetes as being Type 1, but then realizing it really doesn't matter what type I have.

and Rhonda, I'm right there with you... type 1 and overweight, fighting like mad to get weight in control and keep diabetes in control (in fact many years of poor control was probably what kept my weight down, sad, but true).
Trying to overcome the stigma that comes with having Diabetes of any type is challenging - I take that challenge on, hoping that people begin to understand that NO ONE has diabetes by choice.. but that everyone who has it has many challenges to deal with it.

It isn't so much that my perception has changed. Rather, my technical understanding of diabetes has changed. Significantly. When I was little, T1 (which I have) and T2 were referred to as non-insulin dependent and insulin-dependent. Or juvenile and adult-onset. But science has progressed. We now primarily differentiate between T1 and T2 by looking as c-peptide levels and the presence of antibodies. BUT (and here's where things get murky), even T1 comes in varieties. Most develop T1 as the result of an autoimmune attack on the pancreas, but people with T1B diabetes (seen mostly in Asian populations) do not have antibodies and may spontaneously produce insulin. There's also MODY and the fact that too many people with a T2 diagnosis are actually misdiagnosed T1s. There are people who fall into the "gray area," those who have elevated BG levels but don't fit neatly into any of the existing categories. There's a lot we still have to learn about this topic and I sincerely wish the medical community would stop focus on labeling and instead focus on what works best for each individual patient.

Man oh man! In the past week alone, I have been asked if I'm type 2 (presumably because I'm a bit overweight and mentioned the fact that I have diabetes) probably 3 times, and then when I say I'm type 1x18 years, diagnosed at 8 on a pump and CGM, THREE times as well, I have been told - OH wow! You must be REALLY brittle and out of control then, huh?! And all 6 of these comments / questions have been from the nurses I work with! PISSED me the heck off, so I took it and ran with it and educated the snot out of these ladies... they now know WAY more about diabetes than I'm sure they ever needed or wanted to know... but man... pump + CGM = super brittle horribly controlled blood sugars? Umm... NO! Acceptable control but wanting more freedom = employ the wonderful technology we have now to KEEP good control, hopefully improving it, and allow for more freedoms...

sometimes when people say stupid things about type 1 (and, after living with type 1 for 40 yrs. , I've heard some really DUMB assumptions), I guess my human nature rises up, wanting to defend myself.
But, there are probably a lot of "assumptions" that I have made in my life, as well.
I am still learning to be more"adult" like, in my responses to different things, even though I've been an "adult" for a long, long time
great post !

The 3rd type is the one people often forget about - gestational. It does not necessarily end after the baby is born. It can cause permanent damage (expecially after multiple pregs with GD) and increases your risk of developing diabetes later in life (there is some debate if that would be T1 or T2 according to my endo).

I used shots during one pregnancy and a pump during another. No matter how fit I am, I will most likely be back on insulin as I age. My numbers still spike during the night (which is why I take Victoza at bedtime).

My endo feels that as I age my damaged pancreas will eventually give up and I will be back on insulin. I can be fat, thin, a health nut or a sugar addict but it will likely happen. I try to take care of myself and my pump experience helped me see how my body handles different foods/fasting.

It was not my fault I got GD. I was upset enough by the comments non-diabetics made, but the judgy comments from people with T1 really took me by surprise. I appreciate this post so much!

BTW - I am happy to say that my pregnancies ended with healthy babies in healthy weight ranges with a healthy mom who was was able to successfully breastfeed. That outcome is all that matters!

I used to explain more to folks when they made incorrect assumptions about diabetes but now I involuntarily roll my eyes and think IDIOT! Then I move on.

We’ve probably all had this experience. You tell someone that you have diabetes and they tell you that their cousin/uncle/friend had diabetes and, of course, they died young.
IDIOT!

Real conversation with my former employer as I arrived at work on a Monday morning:
He: You made it!
Me: You weren’t expecting me?
He: Well, you’re on the top of my list now.
Me: And what list is that?
He: The employee most likely to die over the weekend.

IDIOT!

My daughter’s ex while he was studying to become a paramedic. “If you get a call for someone with low blood sugar, you inject them with insulin.”

And kill them, IDIOT!

I realized my glucose was super high during a recent exercise class and stopped exercising, discretely bolused, and started sipping water. Concerned instructor asked why I had stopped. Explained high blood sugar situation and that continuing exercise could make it go higher. She gave me a snack bar and told me she used to have diabetes but started eating better and it went away.

OK, I’ll stop now; we all have many stories like these.

Lissa - I'm glad someone brought up gestational. I'm type 1 and overweight AND pregnant. At my OB appointments the medical assistants and nurses often assume I have gestational diabetes because those are the diabetics they are most used to dealing with.

I used to explain type 1 diabetes to people saying "There's type 1, which you usually get as a kid or teenager (I was 17) and there's nothing you can do to prevent it. Then there's "I got so fat I got diabetes" diabetes, which is most of the time preventable or even curable with diet and excercise."

Now that I am an adult with diabetes and a few extra pounds, I'm a lot more careful about my definitions.

One of my top pet peeves: the term "brittle diabetes". Makes me want to punch the person in the face everytime.

Also, e-i's post made me laugh out loud.

''Society does Not Like people who are Different,'' like us:
Type I, or Type II :( If you are not "Normal" this is the status quo to be expected... I have only 35 years of Diabetes to back these types of observations up! :(

Thank you so much for this Abby... I agree and I think it's really important.

I'm an RN too and I work with a bunch of adults with type 2. I think there is so much about these messed up stereotypes that affects them negatively (and also affects us type 1s).

One thing I've been thinking about a lot lately, and has been bothering me, is the way people talk about insulin and type 2s, especially providers. A lot of health care providers do hold it over people's heads - like if you do a bad job, you'll go on insulin, if you do a good job, you can come off it. This guilt stuff is so wrong - mean and really unhelpful. But it's also really inaccurate. As you mention, many type 2s just need insulin even if they are exercising and eating well (I have PLENTY of type 2s on insulin that are not that chubby). I also came across a great article talking about how type 2 is a progressive disease - and most will need insulin after a decade or two with type 2. I think it's important to prepare our patients for this and normalize it. The struggle against all the BS people have been told is such an uphill battle when people do need insulin. I think a lot of providers are not well educated about this.

Abby,
I am so glad you posted this. Like you stated there may be differences in the various types of diabetes but we are all more alike than we would think. No diabetes is curable or can be treated and cured. The only diabetes types that seem to go away after awhile are gestational and transitory neonatal diabetes. Other than that I don't know of any other type of diabetes that goes away. With type 2 there is even an autoimmune form called Flatbush Diabetes. I don't think we have even scratched the surface of how many types of diabetes there actually are. Abby you are right, we need to stop arguing with one another and support each other regardless of the type we have and we need to get these ignorant stereotypes about diabetes to stop.

T1 40 years. Your still alive?

Abby...spot on! the guilt factor for T2 is enormous to go along with the public scorn. I'm mid 40's, avergae weight/height, paddle outrigger canoes competitively and T2 for 5 years...why?? that danged organ is slowly giving up on me.
I wear ID as I need people to know; if out in the ocean things go wrong, and everyone who has noticed my medic alert dogtag has say "Oh if you didn't eat that Spam masubi or paddled longer you could have prevented it" Really?? They spoke to my genes and organs and they snitched on me?? Buggahs!

Its tough for anyone who is not in the perception of "Normal"

Thanks for acknowledgement

My dad had type 1 diabetes, and he always wanted to keep it a secret (from co-workers, friends, other people who didn't really need to know). I remember asking him why - to me as a kid it was just a normal part of who he was - and he said because other people tend to get really judgmental of adults with diabetes, assuming it was type 2 and that he hadn't taken care of himself and therefore deserved it, etc. And he didn't want to have to deal with that. I always kind of thought he just wasn't giving his coworkers and friends enough credit, but now that I'm an adult with T1D, I see how right he was! It's very frustrating.

"I got so fat I got diabetes" I love it! Thanks for phrasing that so well. The perception that I have seen of diabetes has changed drastically since my grandmother was diagnosed with it in 1969. I don't think she ever heard "If you'd lose just 10% of your body weight you will be cured." Now that's all I hear and from people who should know better, like the RN in my cardiologist's office. The first time I was diagnosed with GD I was 21, six months pregnant and I weighed 105 pounds. I had GD with every pregnancy. I have been insulin resistant for all of my adult life. I eat very heathy, I exercise every day and I've lost more than 60 pounds (way more than 10%)in the two years since I was diagnosed with T2. When does that 10% rule kick in? Thanks for writing this. Your effort is greatly appreciated.

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