I get tired of being treated like I must have Type 2 because I'm an adult

So many people treat me like I must have Type 2, it must not be that serious, because I'm an adult.  I'm not someone to complain but it's really starting to bug me.  I've had type 1 for 27 years and it's starting to take it's toll on my energy levels, etc.  I lead a pretty normal life but when I don't "feel well" I feel judged, as though I'm faking it.  '"Juvenile Diabetes" is for kids.'  Does anyone else have experiences like this?  Any suggestions?  Is it a matter of educating others or just moving on and doing what I need to do for me and not caring what others may think?  I'm just really bugged by it lately.

Well I kind of know what you mean. I often have to explain to people the difference between Type 1 diabetes and Type 2. When I tell people i have type 1 diabetes they sometimes start asking me if I exercise and eat fruits and vegetables. I have to tell them that exercise nor diet can get rid of Type 1. And I have to explain that weight has nothing to do with my type.  People just don't get it!! :) We need a public service announcement. The media does not help because in the commercials about preventing diabetes, they just say 'diabetes' and not 'Type 2 diabetes'. Hang in there! :)

I get frustrated with people not knowing the difference between Type 1 and Type 2 as well. Depending on who I'm talking to, when the subject comes up I will quite often nowadays say "I have Type 1 diabetes" to at least start off with the right name for it. Then I'll answer questions if they don't understand. If I get into a discussion about it with people I'll often say something that I've heard said before, and that I completely agree with - Type 1 and Type 2 are like completely different diseases.

A lot of people think that people with Type 1 are always "born with it" and when I tell them I was diagnosed at 16 years old it sometimes feels like they don't really believe me. If I meet someone and tell them I have "diabetes", sometimes they'll ask "which type"? I find it a little bit offensive because I'm 26 and not in the best shape, but I feel like they are judging me by thinking I could have Type 2. One guy I worked with, who was a really rude person in general, actually said "Oh, Type 2?" when I told him I had diabetes, which I found so offensive!

Basically though, I talk to people about it as long as they want to listen and learn. I must admit I'm not the best advocate for people who do have Type 2, because I am always making sure people understand that Type 2 is the one that you can sometimes control with only diet/exercise or pills, and that no Type 1's did anything to get the disease and they can't live without insulin!

 

I too know how you feel.  I can't begin to count how many times after telling someone that I am diabetic they replied "but you're so thin"!  I was diagnosed just four months before my 21st birthday.  Sometimes it seems impossible to educated others that juvinile diabetes isn't restricted just to children.  It has become a little easier since advertising on T.V. for Type 2 has become more common.  At least some are now asking "If that is Type 2, what other types are there?"  We all just need to stay positive and remember, who better to educated the public than those who are living it!

I know exactly how you feel. I became sick with type 1 diabetes at the age of 4 and am now in my 47th year of living with this disease.  Even the American Diabetes Association does not distinguish between Type 1 & Type 2 on their brochures dealing with diabetes that they like for volunteers to pass out in order to get donations.  I actually called that group and told them that I will not help to collect funding for their group unless they print on their literature that is to be given to people that the majority (95%) of all diabetics are type 2.  Also, I just read an article concerning the healthcare system in the USA in the March 16th issue of TIME magazine. At the bottom of one of those pages (p. 29) was printed five priorities for health care reform.  Guess what the third one listed was???  "Realign Doctors' Incentives - Our system pays doctors to diagnose, test, and treat---not necessarily keep people healthy. It's why chronic diseases like diabetes absorb 80% of our health dollars. Pay for holistic success."   I was so angry when I read that statement! It's type 2 diabetes that is using all of the health dollars!  I feel that statement should have read "type 2 diabetes".  Excuse me, but the majority of type 2 diabetics could have prevented the disease themselves by keeping their weight down.  I really resent being placed in the same group as people who caused their own type 2 diabetes and those diabetics don't have a clue as to how it feels to have had the disease for a lifetime.  I'll spare you from going on & on here, but I definitely understand. 

Woah, doggie!  We also have to recognize that not all Type 2 diabetics have caused their own disease.  Part of it is genetics, part lifestyle, and part "just because", to be fair. 

It is a shame that there T1 and T2 are so distinctly different and yet in the public eye, they are one and the same, and all diabetics should be treated the same.  That's why you get the questions like, "Can you EAT that?!?"  Um, duh. 

I am overweight slightly and people automatically assume that I am type 2 and that I just need to lose a few pounds and I'll be fine.  One woman at work, when I told her that I had diabetes, she said "well, you better get that under control."  Like, right off the bat.  I looked at her kinda crazy and said, "What makes you say that?  My diabetes is controlled rather well.  (Thank you very little!)" And she was like, "Oh. Ok."  She assumed that it was out of control because I am overweight.  I already have enough to worry about dealing with my weight issues and other medical problems, that I don't need any criticism from HER; I already have enough from myself!  :) 

People are becoming more educated as more and more people are diagnosed and it becomes an epidemic, but it is slow going.  I am careful to explain the differences, but also careful to not "blame" T2's for their disease, as much as I don't want to be blamed for mine.  My business is taking care of myself and if people are going to judge, or make assumptions, then they are the ones that are ignorant.  I can only educate, and then let them be.  They can't steal my love of life and my good health care.  So, screw 'em!

I totally relate to how you feel. I can't tell you how many times I've hear the commnent "but you're so thin"  Even more complicating the matter is that I am a late onset (LADA) type 1 who became diabetic 5 years ago at age 39 - almost the exact same age as my dad did.  The doc in the emergency room when I was first diagnosed, diagnosed me automatically as type 2 because he just assumed. My endocronologist later told me that with folks like me, the misdiagnosis in unfortunately not that uncommon.

I just passed my 1 year marker for type 1 dx, at the age of 45.  i've had the same assumptions made about me and have found that the more open i am about diabetes, the less i feel resentful towards other people's ignorance.  my father has had type 2 for years and when i went out to visit right after my dx, i had to explain like every time the subject of food came up, the differences between the two...he would tell me over and over again if i ate the right way and took the pills the right way that i would not have to "shoot" insulin.  so i had a crash course on "being patient with ignorance" and "responding with grace and truth in love".  the funny thing was how he controlled his bg levels was by eating high sugary foods and taking more meds! :)  oh well.  i truly believe that through trials, and i've had a fair share of them, i am becoming more like the person i was created to be.

Hey Lucy,

I get that all the time from people who are not educated enough about the different types of diabetes. Usually it makes me feel better to immediately inform these people the differences between type 1 and type 2 stressing that type 1 is not just a kids disease.

I have been through alot of ridicule over the years.. I also get, "but you look so good, you're healthier than most people I know, but you're not overweight, but you don't look SICK" etc. etc. Usually all I say is "that's because I am a T1, not a T2" If people are interested, they will ask what that means. If not.... oh well.

I do not care what people thnk about my health, my testing in public, the pump that is at most times, clearly visible. I could not care less what people think of me. I do what I have to do to stay alive, and I refuse to let some ignorant person rain on my parade because of their ignorance. I have better ways to use my energy.

I think this is a common issue with T1. It is something I talk about frequently. I am overweight and everybody assumes I am T2 all the time. And that it is my own fault. You do just have to get past the un-educated stereotype and focus on yourself. I also hate how people are constantly telling me what I should eat, and they give me advice on things they read about T2. After having diabetes for 20 years, I feel I don't need advice from nosy people. That's when I get really mad about it. I know they don't mean to, but they are totally insulting my intelligence. I mean, I wouldn't walk up to some 30 year old and tell them what they should be eating...so frustrating.

Hi All,

I also know how some people including Dr's think I must be type 2. I am new member of type 1. I was dx'ed in Aug./08 at age 52, not to overweight for my age they tell me. It's my age I think that causes them to think I am type 2. I tell them I must just be a big kid LOL. A lot ask if I use insulin, I would like to say DUH I am type 1 but most people just don't know, I didn't till my little visit to ICU. Another question I get "how did it happen ?" I just tell them they don't know why, something just made my body attack my pancreas. One thing that kind of bothered me was an Uncle who is type 2 (very overweight and drinks about 18 pack of beer everyday) you need to get off insulin as quick as you can. I want to tell him you have no idea what you are talking about, I don't think he knows that for me that means I'll die. Dude you seem a little down, well DUH if it wasn't for modern medicine I wouldn't be here now. I take this very serious lots of testing and wanting to live as long as I can. Sorry about venting but this person hasn't taken his BS in years he just says if "I stop drinking it hurts", but he's knows what he talking about as he had 1 class and has been diabetic longer than me, but he almost lost some toes and his toenails are falling off. Some people!

 

This just about sums up what I had to deal with yesterday with my room mate and his mother haha. The whole "you aren't allowed to eat carbs and need to exercise." Also got to deal with the "well you must have really eaten a lot of sugar in order to trigger diabetes." Had to again explain that T1 is predetermined (genetically anyway) and there's no avoiding it...if it happens, it happens, and that nothing that had to do with ballooning to 270lbs my freshman year of college caused it (I believed that that was the cause for some time).

Much as others have said in here, I feel that you just have to deal with peoples' ignorance and not take it as an insult, but more so as in their minds they're trying to help. But instead are causing you to stress out and get angry because they aren't educated. You can't really blame them for being uneducated. Did any of us know as much as we do now about diabetes before actually being diagnosed? I mean, my sister got diagnosed 16 years ago with Type 1 so I knew more than most people who were never introduced to the disease before knowing us, but for the most part, we knew as little as they do/did prior to living with it and being educated on what makes it happen and how to manage it.

I would take their ignorance as an attempt at trying to be helpful and possibly just explain that you have type 1 and give the differences between the two. Gina had posted a link somewhere on here that had a print out relating to educating others I think, but I don't remember what thread it's under.

Sorry for the long winded answer...

-Pat

I always say, "I have Type 1 diabetes" and never say "diabetes."  I was diagnosed with Type 1 diabetes at age 35, and when I tell people that they look puzzled (I suppose because I am thin and very fit), and I say "it is just a myth that Type 1 diabetes is a childhood disease, the vast majority of Type 1 diabetics are diagnosed as adults."  To the person that said that Type 1 is just 5% of the total diabetic population, it's more like 20 to 25%.  With the advent of antibody testing (the definitive test for Type 1 autoimmune diabetes), it's been found that those "thin Type 2s on insulin" are antibody positive and have Type 1 diabetes (sometimes called latent autoimmune diabetes in adults, or LADA).  So classical Type 1 is 5 to 10% of the total diabetic population, slow onset Type 1 is 10 to 15% of the total population, and the majority (about 75 to 80%) have Type 2.  I really hate that the umbrella term "diabetes" is used in the media when they are strictly referring to Type 2.  And I do take offense when people assume I have Type 2.  When they start talking to me about Type 2, I just say that that is a completely different disease and I don't have that disease.  But it is so true, frankly I knew very little about Type 1 (and virtually nothing about Type 2) before I was diagnosed.

Melitta

This subject and everyone's comments/posts made me think of this article in the NY Times a friend sent me years ago that I'd bet quite a few of us can relate to: http://www.nytimes.com/2006/05/17/nyregion/17diabetes.html?emc=eta1

But yes, I usually tell people that I wish they'd just come up with a completely different name for our disease so people stop associating Type 1 with all the criteria that normally goes along w/ having Type 2 (I was a skinny little 6 1/2 year old when I was diagnosed!).

Hello Melitta,

 

I too was diagnosed with Type 1 at 33 years of age after getting gestional diabetes at 3 months into my pregnancy when I was 32.  After giving birth to my son, the diabetes was borderline until my son was 6 months old and then I became a full-blown Type 1 diabetic.  My father and brother are also Type 1 but they got it at 1 years old and 12 years old respectively.

I too am tired of people thinking it is Type 1 nevermind how difficult it is to find any local support groups for adults with Type 1 diabetes.  I do believe they have fazed out the term "Juvenile Diabetes" but still I don't think people realize the BIG difference between Type 1 and Type 2.  Least I say that my pancreas is dead so I am certainly not Type 2 and cannot change my situation regardless of diet, exercise, etc...

 

Take care,

 

Jodi

Hi Jodi:  Your story of pregnancy being the trigger for Type 1 diabetes is SO common and also SO not widely known.  The media and the diabetes media all say that GDM often leads to later Type 2--not true!  At least in Europe, all the diabetes literature says that GDM can precede Type 1 and Type 2.  For Type 1's, pregnancy and the associated hormones are "the straw that broke the camel's back."  In one study I read, ~45% of women who required insulin for the first time during pregnancy had new onset Type 1 diabetes (based on the gold standard, antibody testing).  My "straw that broke the camel's back" was actually two illnesses back-to-back.  It was too much for my poor system, which undoubtedly had been under autoimmune attack for some years.

In recent correspondence with JDRF, the person I was emailing with said that JDRF is putting together a new packet of info just for new adult-onset Type 1 diabetics.  Finally!

Interesting, not surprising, that your father and brother have Type 1 as well.

Best of luck to you!  We all need it :)

Melitta

I was just dx'd with Type 1 in 10/08 at age 43 - thank goodness my PCP noted that I "didn't fit the profile" for Type 2 and got me to an endo who did the antibody tests to confirm LADA. Everyone assumes I have type 2 & I have to go into educational mode to explain how it is I came to have type 1 at age 43! I also get people commenting that I should be able to manage my condition with pills. Oh well,  I give everyone who asks the "cliff's notes" about the 2 types of diabetes (or 3, if you consider LADA different, rather than a subcategory of Type 1).  

Hi Melitta,

Thanks for your reply. 

I have to say that I am surprised on how many late onset Type 1 diabetics there are that I am discovering.  You are correct that if you have gestational diabetes the diabetic nurse educator and doctor would tell others (not me however - they made it clear that I was likely to continue as a Type 1 after the birth) patients that they MAY develop Type 2 later on since they had gestational diabetes.  I had two friends who were pregnant at the same time and on insulin whose diabetes did go away but did return earlier in the second pregnancy and they are certainly at risk.

Yes, diabetes runs rampant in my family, not only my brother and father have Type 1 but my uncle is Type 2 on insulin (my dad's brother) and both my mom's parents had Type 2 on oral medication.  So, the only one left not a diabetic now is my younger brother and of course my son.

Just curious, can you give me any advice on what I may be able to do so that my son does not get diabetes.  I know that it is genetic but was just hoping there may be something I can do to TRY and prevent him from getting it. It is probably wishful thinking but my only concern is my son.  He is very high strung (ADHD) and I would just die if he got it as I am sure it would be a difficult battle to say the least (and I saw what my mom went through with my brother).

Thanks,


Jodi

Hi Lyanne,

I am not sure about the antibody test but I know my doctor did bloodwork to check my insulin output and she said my pancreas is dead and not producing any insulin.  It was producing a small amount initially but after 2 years it died. 

It is annoying how people assume if you are older it is Type 2 and your fault. 

Luckily, most people I know realize the difference as many family members have Type2 and there treatment is much different.  They still eat what they want and go about life without any interuptions or worry about blood sugars or anything.

Good luck as I know it is a big adjustment.  For me personally, I had A BIG SWEET TOOTH AND LOVED TO BAKE.  I stopped baking for a few years as I lost my passion since I could not eat the baked goods but glad to say my passion has returned and now I know I can take a little nibble so I do not feel deprived.

Hope you have a good doctor as this makes all the difference.

Take care,

Jodi