The Stigma of Being a Type 2

Type 2
1

I often feel like my disease is viewed as something that “you bring on yourself.” And I often wonder if this stigma prevented me from being diagnosed earlier than I was. At diagnosis I was 29 with a BMI of 25. To this day, I often have to convince a new health professional that I meet (be it nurse or dietician whatever) that I do in fact have Type 2 because I guess they expect me to look a certain way.

So to stir the pot a little bit, I’ve got a few questions for you fellow Type 2ers.

Do you think the awareness campaigns that link obesity and Type 2 diabetes are giving us a bad rap?

Did your preconceptions of Type 2 cause you question or deny your diagnosis? Or perhaps even prevent you from investigating your symptoms?

Does the stigma around having Type 2 cause you blame to yourself in any way?

Do you resent others who don’t take care of themselves and are not diabetic?

2

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?

3

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!

4

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.

5

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.

6

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.

7

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.

8

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.

9

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!!

10

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.

11

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.

12

I guess I am the other side of the coin. I do sometimes blame myself for my condition. I dont really blame myself to feel bad about what happened, but I blame myself because of the lifestyle I lived. The only one thing I dont agree with is that all obese people will get diabetes. I think we are predisposition for certain diseases based on family background. I did not know my father or his family so I could not make better judgment calls or anyone beyond my mother. I think they should focus on predisposition for certain diseases and the lifestyle choices that will help people make better decisions. Like heart disease information, not everyone shown in campaigns are obese people, but they show the skinny guy who just had a heart attack and is now on lipitor.

To answer your questions

  1. The campaign should be focus on predispositions and lifestyle. I lived a very unhealthy and stressful life that i believe woke the sleeping giant in me called the big D.

  2. Preconceptions made me think about the lifestyle I lead that could put me in a position to wake the giant. The gene was there I just activated by an unhealthy lifestyle. Because when I live a better lifestyle my numbers come in check with less medication. I even managed to stop using insulin or pills for 3 years when i slowed down from work and eating bad and dropped some serious weight.

  3. I do sometimes blame myself for where I am today. It may be because of the stigma or I just need to put my finger on what to do to control. If I do the opposite of what I did to start the problems, maybe the reverse will happen and it has for some months. I think stress makes my pancreas go on strike. If I work too much for a long period of time then numbers shoot up, If I exercise and take it easy, they come back down.

  4. I really dont resent others. I wish they take better care of themselves and I oftern see people i around who are overweight and smoking and I think, man you are killing yourself. I guess I am more aware

take care

13

Hi Kelly.

I think the media and Drs tie the obesity link to T2 a little too much. While that is one factor there are many others and the exact mechanism is not known. I think the fact that so many people here in the States are overweight factor into a lot of the campaigns: diabetes, heart disease, etc.

I have a long history of not eating right and skipping meals while working and then grabbing junk food to get by so was not really surprised to get the diagnosis. My symptoms crept up on me and that took me by surprise.

I really don’t feel that there is a stigma. I grew up with the fact that my mother was a T1. I am a nurse. And I have no problem talking to someone and letting them know that I am a diabetic. I have no problem checking my BG in public. I think there needs to be more awareness and education. I do blame myself for the way I ate growing up and occassionally I have to admit that I fall back into old habits but not near as bad or as frequent as I used to. I get a little better all the time.

I don’t resent others as much as I wish they knew what they were doing to themselves and what they are/could be missing out on. Right now my husband (not a D) and I are both trying to lose weight and get healthier so we can do some of the things we want to now that the children are out of the house (hiking, snorkeling, scuba diving, fishing, etc.)

14

Susi,

Yea, my mother does say those things. She’s usually the most supportive, loving person. I’ve asked her never to mention her theories & how much hurts me. She has Hashimoto’s & I’ve asked her what she did this to bring it upon herself. I don’t appreciate being held up as a negative example to my teenage nephews.

Great idea about a YouTube video!

15

I’ve never viewed my condition as something “I have done to myself” I was diagnosed 2 year ago at the age of 32. With height of 5’4” and weight of 115. By “normal weight scale”, I was 10 pound underweight. Regardless of weight, I was pretty active. Though heavily stressed at work (I was still working then), I routinely workout 3 times a week and plays sports (tennis or golf) most weekends. I was advised to rest for 6 months because of asthma exacerbations. That’s the time I noticed the classical symptoms of diabetes. I’m so stubborn though…didn’t pay attention…until one day found myself in the ER having a bg of 400.

Yes…I think that type 2’s are stereotyped to be obese, older, sedentary lifestyle, maybe disregard for healthy food. Personally I have pictured a diabetic as such (guilty here). Until it happened to me. Until now it amuses me, when I casually tell somebody that I’m a type 2 diabetic, the amazement on their questioning eyes.

Was devastated and depressed at first but a wonderful support system (friends, family and community) and an insatiable clamor of diabetes knowledge easily turned depression to challenge.

I have never blamed anybody, much more myself.

I do not recent others for not taking care of themselves. BUT being diabetic myself, I cannot help sometimes playing “police” and be critical of others…especially to the people I love most. I tend to be a bit “protective” with them emphasizing healthy eating and exercising regularly.

16

Do you think the awareness campaigns that link obesity and Type 2 diabetes are giving us a bad rap? I think that this linking the two is a disservice to us all. Yes, obesity may have something to do with diabetes, but we aren’t certain about that. People who are very thin, or right on their target weight are diabetics, also. Maybe that’s where we have to do some educating of the public ourselves…fat doesn’t equal diabetes anymore than red hair equals heart disease.

Did your preconceptions of Type 2 cause you question or deny your diagnosis? Or perhaps even prevent you from investigating your symptoms? My reason for denying my diagnosis were related to my grandmother who didn’t take care of her diabetes. I have a mental pic of her curled up in a fetal position at 76 lbs before she died, that was my idea of a diabetic before my own diagnosis. I decided when I got my diagnosis, I would ignore it, because I wasn’t going to be my grandmother. I know it’s silly now, but quite traumatic when I was 47…I didn’t go looking for a diagnosis, it found me, thank goodness

Does the stigma around having Type 2 cause you blame to yourself in any way? I have been overweight since I was 13…I was diagnosed when I was 47 — I don’t think there is a connection. I don’t blame myself in anyway, except to say that “my brother got the money, I got the family diseases, as I have several of them that other family members have had”. What I don’t understand is the word “stigma” When I think of stigma, I think of blame or a curse…I don’t see diabetes as a curse in that sense of the word. I think of it as a malfunction of my body, that I didn’t cause, I didn’t make happen, I certainly didn’t ask for it, it happened, and now I deal with it. I am diabetic, diabetes is not me.

Do you resent others who don’t take care of themselves and are not diabetic? The people that I have the hardest time with are those diabetics, who know they are diabetic and don’t take care of themselves, those who ignore their docs advice, eat and drink what they want, don’t take their meds, don’t journal their BG’s, and don’t see a doc. I want to scream at them, because they are literally throwing their lives out in the street. People who are healthy and don’t understand that I am a healthy diabetic are my next to have difficulty with…they are usually the helpers who try and help me walk, eat, make choices, take my meds as if I were a child. The people you are talking about are unaware…of what not taking care of themselves can mean in the long run. They may live a long and happy life, they may die tomorrow…but isn’t that true for all of us?

17

Hi Kelly

I don’t see any bias or stigma, but in my particular case I definitely blame myself. I watched what diabetes has done to the firstborn members of my family an I ignored it. I was 6’ 180 lbs in college and ignored it. By the time I was diagnosed last year I was nearly 250 lbs. While I ran my business, I didn’t work out, didn’t sleep, and wound up with my blood pressure at 175/105. Needless to say the sudden weight loss without trying was alarming.

Do I think others brought it upon theselves? I am sure there are others like me. Did everyone? No. Do I beat myself up about it?No. I work out hard 3-4 days a week, I eat far more healthily. I don’t have my business anymore and I stop working at 5pm. It is a beneficial lifestyle change.

Bonus? My kids are eating better and my 13 year old son asks if he can go with me to work out at 5:30 am when he doesn’t have crew practice.

18

unfortunately there is way more ignorance than can be dealt with. You have to ignore people and what they say. Or when someone might share their wrong info with you, ask them where they got their medical degree (usually they don’t HAVE one). Then tell them to keep their unsolicited advice to themselves. They aren’t worth spending the brain glucose on trying to explain the different flavors of type2. Only SOME cases are brought on by the person. But this would be too hard for the average joe to comprehend.

19

I am a little like wil v. I, too, had gestational in my 30s. I took very good care of myself throughout my 30s and staved off my prediabetic condition until I turned 40. And then I feel I let myself go. I could not keep up with the demands of exercise and weight watching (especially since I had become so insulin resistant that my weight was not keeping steady with exercise and I got sick of eating below 100 carbs a day) that I just gave up.

So I do feel guilty for not managing my condition as well as I should have. And I shouldn’t have whined - look at the Type 1s who DON’T have the option of just giving up.

However, do I believe it’s my fault? Not so much. I know it’s in my genes.

Do I believe the stereotypes have hurt us? Yeah.

But I know that my motivation and lifestyle did contribute to me getting full blown diabetes. If I lived my life in regret, where would I be?

I pick myself up, move on, and continue. That’s the best we all can do, right?

:slight_smile:

20

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