Type 1 Frustrations "the experts"

Hi everyone, my name is Chris. I’m pretty new here, and love this website! I wanted to air out some frustrations I have with being a type 1.

I’m so tired of everyone being an expert on diabetes. “Well I heard on the news that diabetes can be cured with proper diet.” “Well there’s a new pill out that is supposed to cure that, why don’t you take that.” Then you try your hardest to explain the difference between type 1 and type 2. The other person stares at you like you’re an idiot, and don’t know you’re own disease.

My other frustration is probably at the top of everyone’s list. “You shouldn’t eat that.” I for one like to eat a piece of cake, ice cream, candy bar, or pie sometimes. “You shouldn’t be eating that, that has sugar, you can’t have sugar.” That’s when you try to explain that the mashed potatoes you just ate have more carbs than the cake, and it’s not the sugar it’s all carbs. Sugar is one of many carbs. “Well, you still shouldn’t be eating sugar.” She said "Well, that’s just what she told me.

I am so frustrated by people giving their 2 cents on my diabetes. I can’t take a pill to cure. I could lose that 10 pounds, but I’ll still have diabetes. I can and will eat sugar, and laugh at you while I’m eating it. I’ve often joked about making a pamphlet that contains information about type 1, keep them with me, and just hand them out. What are some stories everyone else has with these experts? How do you deal with them?

Yeah… I’ve had some experience with people trying to tell me (though I am Type 2, not 1), that I can cure my Diabetes if I just diet and exercise, or take the latest pill on the market… But there is no cure. And they argue strongly back with you… like they are the top authority. There’s a nice little funny video on our site called “The Diabetes Police,” which can kind of give you some good ideas on how to deal with the different types of personalities that try to monitor your food intake and care. I find it helpful. :slight_smile: You may want to give it a view.

Hi Chris,

Happy Valentine’s Day! Your dogs are precious. What cutie-pies!

Check out this discussion from last year. Sure you’ll nod, eye roll & get some smiles:

There’s a recent discussion “Pet Peeves” & your sentiments are widely shared.

What I do, depending on my mood, is smile & thank them for their concern. Sometimes, again depending on mood & the person, thanking them is accompanied by an icy look. Other times, I briefly educate people. People simply don’t know, though it’s unspeakably rude & intrusive to tell people under any circumstances what they should or shouldn’t eat.

I hear ya. Gets old.

Pamphlets are a good idea:)

Welcome to TuDiabetes! Glad you are enjoying the community. I invite you to watch this video our founder, Manny Hernandez, did on this subject. (also watch the one Lizmari recommended - a favorite of mine). I’ve had type1 for 42 years, and my husband and my father have type2. The pamphlet is a good idea.

Let me know when you get the pamphlet made, I’ll order some! lol

Amen! Yeah I have often gotten comments like that. Then there are the people that don’t understand how hard this disease is and don’t really seem to want to learn any more about it. I actually had a co-worker ask why I had not outgrown it. She is lucky I did not explode or smack her. I am sorry but ignorance like that, to me, is unacceptable. For all the diabetics that are in this world, it seems to me everyone should know at least one diabetic and a type 1 at that. Because there is a BIG difference between the two.
I had actually written a page on what to do when I get low and posted it at work after I had a reaction. I think it helped. But a brochure is a great idea.
Thankfully most people I work with see me munching on sweets and know that I need them to help me.

There is a diabetes etiquette pamphlet somewhere. I think it’s from the Behavioral Diabetes Institute.

Here’s the link: http://behavioraldiabetesinstitute.org/downloads/Etiquette-Card.pdf

believe it or not you can control type 2 with diet and excercise you may not be able to cure it but you can get off a pills and insulin and put the sleeping giant back to sleep for a while so I think people are confusing that for a cure. As a type 2 I was confused as to this wonderful cure because my educators and doctors could not explain why I no longer needed insulin after using it for a year. So that adds to the confussion out there. My mother used to tell people that God had cured my diabetes because I managed to get out of insulin and pills. I explained to her what really happend but she would not buy it.

I cant be the only freak show that completely went off of pills and insulin for years. I used to think that something excellent had happened to me and my diabetes educators and doctors never explained to me what had happened as to why my pancreas decided to work. 3 years laters I was back in pills. I think the bad rumours come from missinformation from people who had wishful thinking that diabetes could be gone. So now I educate people about the difference. I think a lot of people also think of gestational diabetes as something that is cured once the pregancy is over. I have talked to women that have had kids and told me that there diabetes was cured. Try telling someone who stops taking insultin that they are not cured. They dont believe that it is just dormant. So I think us type 2s have in some point pass on bad information. It comes from a good place but like all rumours and missinformation it gets twisted around by those around us and even ourselves.

One last thought, we are all human and we try to be optomistic about our bodies and is that optimism that makes us think that snake oil can cure our ailments when nothing else has and in that optmism is where the misinformation comes. How many stories have we heard of a parent who thought someone was cured to have them die form not taking there meds.

I’m very glad that you were able to manage your condiition, but not everyone is in the same position. In my case, none of the medications like metformin or byetta showed effectiveness. I’ve followed strict diets, having been a Dr. B follower for a number of years. If you have some insulin resistance, you may well be able to put things into remission by just making some basic changes, however if you have more seriousl diabetic problems, even the most extreme measures may not make the bit of difference. I don’t mean to belittle your success, or suggest that others can’t put their diabetes into remission, but for some of us, the idea of remission is just infeasible.

Wow Terry - I like this. Am going to print it up to present to my members at our next Diabetes Quebec meeting (luckily my chapter is English, otherwise I couldn’t present this as it’s not billingual). Many thanks!

I guess what I was trying to say “the experts” could never answer my questions and those who think they know the cure may be passing bad information. I was guilty of passing bad information at one point until I did some research and met type 1’s here that show the other side of the coin. So it was my ignorance of my own disease that led me to pass on bad information. I am trying to educate myself and those around me about diabetes not just type 2 but type 1 also. I am passing the knowledge that I have learned by reading people’s stories here because i think people need to know just beyond type 2. I used to believe in a magical cure but I know the reality now.

take care

Thanks Gerri! Happy Valentine’s to you also!

I love the part about peeking at the BG numbers. So true!

Think you could raise some serious bucks for research with that pamphlet:)

Will do!

My philosophy is to educate people as much as possible. That energy takes care or the frustration of listening to the misconceptions, myths and untruths that abound about T1D.

When the opportunity (Flashing red LED on someone’s forehead that says I need education!) is there I go for it, whether it be in a Dr office, in line at the store of in a casual conversation.

Don’t get too frustrated, although some will always be there when the out crap is spoked about D. Take to heart that the information about T1D may have never reached the neurons in the said person’s cranium.

I just had someone at work tell me that I could have more carbs if I would just eat lots of fiber. The fiber would just magically erase all the extra carbs I loaded. COOL

Kathyann , I tend to agree with the assumption …the more fiber, that particular carb item has , the fewer amount of insulin I require …, it is called glycemic index .A slice of bread with 6 grams of fiber requires less insulin , than a slice of white bread without fiber .

That fiber math only works so far - while it is true that if what you are consuming contains more than 5 grams of fiber you can subtract the fiber amount from the total carbs; however, you can only subtract the fiber.

It is nice when people try to be helpful and share their knowledge with us, it can be annoying. I will never forget after my diagnosis my husband’s aunt, who happens to be a nurse, said “oh, you must have drank coffee when you were little” ???

Thanks for sharing your reflection Wil. It helps provide some prespective. I think there are many people that think that not taking insulin or medications is a cure.

We had an acquaintance tell me that they KNOW there is already a cure for diabetes because his wife had diabetes while she was pregnant (gestational diabetes) and she was cured when the baby was born. I tried to explain to him that gestational diabetes was a different type and that most of the women who experience see the syptoms go away after the pregnancy (but they are still more likely to get diabetes later in life). His response was that I STILL have diabetes because I don’t want to be cured.

While most of the time, I try to take the “educate” approach, in this case, I decided that I didn’t have the energy and just never talked about diabetes (or much of anything else) with this person again. I did not have the energy to be told again and again that I am causing my diabetes to be uncurable. That it is just a choice.