The Stigma of Being a Type 2

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Permalink Reply by Susi on September 25, 2009 at 11:20pm

Hi Kelly, I was 25 years old with a slightly higher BMI and was diagnosed as Type 2. I was way too young and didn't understand why.

Some 30 years later, and by then on insulin, I had some Type 1 antibody testing at my insistence, and it turns out I have Type 1 - long suspected by me. The variety of Type 1 I have is LADA - Latent Autoimmune Diabetes of Adulthood,, which is a form that takes much longer to become insulin dependent than younger people with Type 1.

But all those years of Type 2, I just blamed it on genetics. Yes, I was embarrassed sometimes to say I had Type 2 because I knew I didn't eat my way to it, but somehow, yes I felt guilty because people's assumptions are otherwise, even the medical profession.

I led a healthy lifestyle, played sport, ate healthy and still, this horrid thing was going on at such a young age.

Something really great to read is Jenny's article: You did not eat your way to diabetes - specifically about Type 2.

Of course if you're pre-diabetes, or know it's through your family, paying attention to diet and fitness goes a long way to staving off full-blown Type 2 diabetes. For me, where once weight would fall off me once I even thought the word 'diet', once on insulin, it became a battle.

So, yes to all your questions except the last one. I've always suspected Type 2 had much more to do with genetics than we're led to believe. There are plenty of overweight, obese and morbidly obese people who don't get diabetes, and may never get it. That speaks volumes! Lucky them!

I'm hoping that the more research points to genetics and a process that causes the weight gain long before diabetes is diagnosed, the more the medical profession and the general public will change their attitudes on this issue.

Even though I'm Type 1 (or LADA/Type 1.5), I will fight on for this issue.

My question for you is... Do you know for sure you are Type 2?

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Permalink Reply by Kelly on September 26, 2009 at 8:15pm

Hi Susi,

To be perfectly honest, my thoughts are going back and forth. Some days I think, "no this can't be possible, how could I get Type 2 so young when I have virtually no risk factors (I was adopted and my records say only that a great-great grandmother had diabetes in old age). Then the other side of me says, "no you had gestational diabetes, there is a potential genetic link and the faster I accept my diagnosis the closer I'll get to moving on with my life."

I'm on insulin because I'm breastfeeding and my boy's about to get an eviction notice from the boob here pretty quickly at which time I'll start Metformin. I asked my doc if she thought maybe I had Type 1 and she gave me the whole shpeel about how it comes on quickly, it's usually in children... and so I thought, ok, you're probably not the best person to ask. So I waited and asked my diabetes nurse and she said they only test for LADA if you've exhausted the oral med options and they don't work.

But I didn't want this discussion to be about that. I really believe that the writing that's out there is casting all of us in a bad light and I wanted to hear how others dealt with it.

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Permalink Reply by patti lopez on September 27, 2009 at 7:31am

By all means, you should be the one in control of what tests you get. I say be presistent on the getting the test done and if they won't find another doc who will.

I truelly believe that I too might be type 1 instead of type 2 because my symthoms started after the birth of my forth child at 23. But wasn't diagnoised till I was 36.

Yeah, the ads are really our enemies....It's up to us prove to these ad makers that spending so much money on that concept is way off the money wagon.

I too was a fit and atlethic young female, so being diagnoised this disease was a huge surprise. patti

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Permalink Reply by Cathy on September 27, 2009 at 11:48am

Having children can cause T2 diabetes even if you are fit and young. I was 18 when I was T2 and weighed 115. I am T2 and on a pump but still T2, they told me my pancreas is basically dead only makes about what the tip of a pen is but still T2. Sometimes having babies does that. But what can you do?

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Permalink Reply by Linda Gauvin-Miller on September 26, 2009 at 7:56am

Man...can I relate...was dx (oficially....though I know for sure I had it long before that) with type 2 at 52, with a body mass index between 19 and 20. Just recently, a DE came to our school to talk to all of us about diabetes, and what to look out for, since the arrival of 2 very young students with type 1. Since I don't teach that grade level, I was not in the realm of those being "educated". I'm one of two teachers with D. The other one, on a pump and type 1, teaches that level...and thus, was in the group listening to the Diabetes Educator in the staff room. I didn't even know about the session, and was going in to make copies. I thought it was another info session on epi pens, as we have many students with severe allergies...'till I heard the word "glucagon", and my ears perked up, so I stuck around for a bit. One of the teachers at that point saw me and said.."we also have another teacher on staff with diabetes" at which the DE asked me if I was type 1 or type 2...when I replied type 2, she waved it off with her hand and a remark implying that it's nothing. Now, what impression does that give the staff members around the table who are coming to be "educated by a professional"? She knew nothing of me, nor of how I manage my D. She was perhaps suggesting that type 2 diabetics don't have to worry about glucagon injections...or that we don't have bad lows (at this, I beg to differ...but what do I know...I'm not a DE)...whatever...the harm is done!

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Permalink Reply by Cheri on September 26, 2009 at 8:31am

Hi Kelly - Here are my responses to your questions.

1. Yes. However, I wouldn't call it "awareness campaigns" as much as I would "media shorthand." I believe the media has done a disservice to ALL diabetics with the shorthand they use to cover a very complex story...........and let's face it, TV is a visual medium, so showing very overweight people while they talk about it has become "standard fare."

2. No, because I was diagnosed so long ago and because there was no denying the fact that it is so prevalent on both sides of my family. However, I can certainly see how that could happen nowadays. I always like to refer people to Jenny's piece about the "toxic myth" that you ate your way to diabetes (as Susi mentioned). Truly, I have come to believe that, for T2s, it's ALL about insulin resistance.

3. No - at least not for getting it. I sometimes struggle with the fact that for years I just did what the docs told me instead of educating myself.

4. I don't really resent others who make the choice not to care for themselves, I'm just glad that I make the choice to do so. Although, I will fess up to sometimes (secretly) rolling my eyes.

All of the misinformation and lack of knowledge out there SCARES ME and makes me feel bad for those under the care of Docs and so called Educators who don't really understand the disease.

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Permalink Reply by Kelly on September 26, 2009 at 8:16pm

I won't say it's just the media though. I've probably burned through about 10 books on the subject since my diagnosis and they all generalize and only a few feature a caveat for people who don't fight the mold.

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Permalink Reply by Cathy on September 26, 2009 at 10:23am

I think it does give T2ers a bad rap and inforce stigma's to a point. They do not emphasize enough that not all diabetics that are T2 are obese or are older. There for a lot of younger thinner people think that it can't be what is wrong with them. That is what happened to me. I weighed 115 and was 18 and waited a few years later which I was still really young but could not put off seeing a Dr. anymore because I thought something was wrong with my eyes. My sugars was almost 600. I am on a pump now and doing so much better. I do not blame myself in anyway because I had gestational diabetes when I was a teen that turned permanent T2. I actually wonder why others that don't take care of themselves at all can eat or live however and nothing happens to their health and then I take care of myself. Eat right exercise all that good stuff and I have the Big D.

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Permalink Reply by Steve Carithers on September 26, 2009 at 11:00am

I don't think the awareness campaigns do much either way. Most people are oblivious until they get the diagnosis. My preconceptions played no role at all. I have many friends who happened to be diabetic whom I had known years before I was diagnosed, some are type 1's and some type 2's. I was tested twice to be sure and the numbers did not lie. Mine was caught early before any damage could be done. I was never over weight and it shocks people when I tell them I am type 2 diabetic, even other diabetics who I run into. I do not blame myself in any way. Whether it is caused by diet or by genetic, or something else, there is too much conjecture either way and we, to a degree, are all creatures of our environment, at least when it comes to our diet and lifestyles. What you grow up knowing or believing is as much to blame as anything else. Even asuming it is something WE did, I still don't buy it that there should be any stigma. There is just too much unknown about it. If anyone tries to feed me a guilt trip or some other line about it, I will tend to give them my middle finger. I am not tolerant of idiocy.

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Permalink Reply by Kristy on September 26, 2009 at 11:16am

I agree with Susi. You should be tested for T1/LADA or find a doctor that knows something about it. I guess it doesn't really matter since you're already taking shots, but it is nice to know. I was diagnosed at 38 as a T2. No amount of low carbing, oral meds or exercise would budge my numbers. For 2 years I suffered thinking I was a T2 with ever increasing BG and steady weight loss. I seemed to get worse in stages of three months. All I could think about was what was I doing wrong. I did everything I thought I was supposed to but my numbers kept getting worse. When I got refered to an Endo I was a mere 98lbs; he took one look at me and my records and told me I was NOT T2. He stated T2's can go 10+ years before ever needing insulin and that 15 years for a T2 is not unheard of. They would probably also require larger doses of insulin because they are still resistant to the effects of insulin.

The thing is , when I was diagnosed I was still producing insulin with an A1c of 6.7 so based on that and my age, I was incorrectly diagnosed as T2. In less than 2 years I was producing almost no insulin and had an A1c of 14+. It just bothers me when doctors base they're diagnoses on age alone and never look at the big picture.

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Permalink Reply by Gerri on September 26, 2009 at 3:25pm

Hope you don't mind a Type 1 jumping in. I get grief from my mother about "what I did to bring this on." No history of diabetes in my family, so therefore it must have been something I did or didn't do to be diagnosed Type 1 at 53. I can relate. I tease her that she should report her findings to researchers since there is no known cause. She warns my nephews who don't eat well to do better or they'll end up like me. Gee, thanks for the support & understanding.

I believe the obesity connection does give Type 2s a bad rap. As a sympathetic Type 1, I wish ads (not necessarily just awareness campaigns) would include not overweight people & younger people to help dispel stereotypes. It's a visual media, as Cheri rightly pointed out. I think awareness campaigns can be very effective.

Doctors, CDEs & dieticians who aren't adequately informed & misinform are the biggest hurdle. I never realized how widespread this was until I read appalling stories here. Stunning & horrifying. When I was in the hospital DKA, I was examined as an oddity. Too old to be Type 1, too thin to be Type 2. One doctor asked me if I was adopted when I insisted that no one in my family had diabetes. My PCP & endo never did a GAD antibody test until I insisted.

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Permalink Reply by Susi on September 26, 2009 at 5:52pm

Gerri, you're serious about your mother saying that stuff? Wow. My mother, when she was alive, and I was misdiagnosed as T2, was far too busy to read magazines & newspapers, and back then there wasn't the hype there is today about T2. I never got all that nonsense from anyone until the last 10-15 years. Just goes to show you the influence the media has.

As a T1, I really wish there was some company who could fund a counter-ad campaign. Get as many normal-weight T2s together - and I know there are plenty, and make ads to dispel the myth that all T2s are (insert stereotype here) - sorry, I'm not even going to say it - it's a complete insult!

I'm even considering suggesting that all the normal-weight T2s should get together and all make short videos dispelling the myths, and I'd (or someone) put it all together and post it on YouTube! At least then, when the next person insults you, you can point them to the video.

I also feel like getting on the end of it and saying well.. yeah, my BMI is between 25 & 30 - that's called 'overweight' folks, and I'm Type 1, in my mid 50s and have appropriate insulin resistance for my age and stage! And go shove.... ooops... no... can't do that of course! But this whole issue makes me so mad!!

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