A question for the Diabetes (Type 1) Community

Thinking about how other people talk about your or your loved one’s condition, what are some words or perceptions that make you cringe? What do you wish people wouldn’t say?

Answers from the Community

I was in a store one time when a child saw somebody checking their sugar. The child said, “What are they doing?” The mother said, “They’re checking their blood sugar. You don’t want to be like them. They have diabetes. They’re going to lose a limb or go blind.” The kid didn’t need that. If I would have found that person, I probably would have given them a stern talking to. Those are the myths that we don’t need. Years ago, there was a book called, Diabetes Myths and Big Fat Lies and that’s pretty much what it is. People don’t understand it, and they try to act like they do. The friend I just mentioned thinks that if you eat more fat with sugar, you won’t get a high sugar spike. She doesn’t understand it, so you have to kind of correct people. It’s not easy to live with, and I think the public needs to be educated and that’s what I try to do. I’m a writer. I try to blog and write about that sometimes, so they do understand it, and so they give hope to their children who may be newly diagnosed or hope to adults who are newly diagnosed as well.

I wish people wouldn’t say, “Is that okay for you to eat?” And saying things like, “If you didn’t eat so much sugar, you wouldn’t have diabetes.” Those are the main things I’ve heard. And friends, I know it’s hard for everybody to understand every chronic condition, but diabetes is often times one of the ones that’s not really fully understood by those who do not live with it.

As a Type 1 diabetic who is completely autoimmune-based, it frustrates me to no end to hear people say that this is all just because I don’t work out or because I’m overweight or that I can get rid of it or cure it. They don’t understand there’s multiple types of diabetes, and it is one of the most disheartening and frustrating things to hear is simply saying that this is within my control, that I caused it, that I can cure it. I also wish people would not judge me when I have a piece of candy. I know when it’s safe for me to have a snack and what snacks I can have. And them feeling like they need to kind of control my diet for me is very frustrating.

That I gave this to my child by giving him too much sugar when he was little or that he can’t possibly eat sugar now that he has it. Or, “Gosh, do you really think he should be eating that?” Or, “Wow, I have a friend who has Type 2 and they lost their leg. Wow, that’s going to happen to you too, huh?” Or, “Wow, that stinks. At least it’s not cancer though.” Or, “Oh, it’s no big deal. Right? I mean, look at all the people who have it.” Or, “Wow, you’re totally going to get huge and die from this.” Or, “You don’t look fat.” Or any number of things like that.

Sometimes I think you can tell in people’s voices they pity me some and they’re sad that I have to go through this and do what I have to do to stay well. But, overall, I haven’t really received a lot of negative comments about it. But that’s probably the biggest thing, is just that they worry about me more that I’m having to deal with this now.

Oh, I wish people wouldn’t tell me how to get rid of my diabetes. Unfortunately, they think I am type 2 or don’t understand the difference between type 1 and type 2, and are often telling me I can use cinnamon or turmeric or lose weight or something to be able to get rid of my diabetes. The other thing that absolutely drives me up the wall is when I say I’m diabetic and then they turn around and tell me how their mothers, cousins, uncles, brothers, sisters, nephew died of diabetes.

I think one of the things that’s really kind of makes me cringe is the fact that people always assume that it’s somehow your fault that you have diabetes, that it was a lifestyle choice or that there isn’t any genetic component or just bad luck and that it’s all controllable by you. And I think to an extent, sometimes that is true, but it’s not helpful to hear. It’s kind of painful because basically it’s that you weren’t good enough, that you didn’t take care of yourself well enough to not get diabetes. I would much prefer the blaming to not happen.

That sounds kind of hard, because I make a lot of jokes about diabetes sometimes too. Like, oh, don’t eat too much sugar or stuff like that. Even though I know with type one diabetes, it doesn’t matter. It’s not caused by sugar. But sometimes it just really annoys me when people are… If they make the joke, and they’re ignorant and you say, “You know you can’t really get type one diabetes from eating too much sugar,” and they argue with you, and they fight. It’s kind of one of those things where it’s like, I don’t know. It’s a little cringy, but it’s not horrible. The other thing I hate is when people say, “Well, I don’t know how you could poke yourself with needles, or put pump sites in, or all this other stuff. I could never do it.” Well, I think you find when you’re not given a choice, you certainly can do it, because you either do it or you don’t live.

I get really frustrated when people think it’s the same thing as type 2 diabetes, where, oh, it was because I didn’t eat well or something that caused it. Or my aunt, she was like, “Oh, well, the reason you’ve got diabetes now, or whatever, is because you had a blood clot 10 years ago,” or something crazy like that. The reason I think she’s saying that, is because that means she probably realizes somewhere within her that it’s genetic, and that it’s my grandfather who had it and my grandfather is the parent of my mom and my aunt. So, for my aunt, I think it’s difficult for her to think about the fact that she probably gave that to her son. Like, he has those genes now. So coming up with weird excuses of things that caused it, that aren’t genetic, I don’t understand it. My mom’s a little different. She’s constantly apologizing anytime I call her about the fact that, she’s like, “I feel like this is my fault. I feel like this is my fault. How’s your diabetes? How are you doing?” Kind of talking like I’m going to die any moment or something, and that it’s the worst thing in the world. Yeah, diabetes isn’t great. It’s definitely annoying and frustrating to manage, but it’s manageable. I think when people talk about how it’s the worst thing in the world or something, it makes it worse somehow. Because I need to remain positive, and I think being around a negative line of thinking just puts me in a bad place. I don’t want to talk about it that way. Like, hey, I want to have kids someday, and if my mom sitting here apologizing every time I call her about how she’s given me diabetes, that doesn’t really make me feel great. What else? Yeah. I mean, that’s the main things that upset me. I think I summarized it. All right.

“Oh her feet are so swollen. Her hands are so swollen. Why is she sweating so much? Why is she drinking so much?”

No, I think it’s a tough condition for me to be a little too sensitive about because I knew so little the condition before I got diagnosed. Sometimes I’ll hear sort of your stereotypical thoughts about type two diabetes, just given that most people have that, obesity, lack of exercise, poor diet, things like that. That might make me cringe a little bit, but I can’t say that I had great knowledge of my condition before I got diagnosed. I do have a lot of sympathy for that as well.

Oh, I could talk for a long time about this one. When she was little and just six years old, they often asked what she ate or what I fed her to make her have type one diabetes, instead of just her pancreas quit and her islet cells quit on her. And it was autoimmune disease. Most people did not understand that. And still, to this day, they do not understand that. Sometimes people will ask her what she ate to become diabetic, how much sugar, if she just didn’t eat sugar, she wouldn’t be diabetic anymore. People often talk to her about diabetics getting their limbs amputated. I can remember when she was six, seven, eight years old, I had older people who would learn she was diabetic and immediately tell her about an uncle who had a limb amputated. And I can just say, having someone say that to your seven-year-old child is just awful. It’s just completely awful that a little child would think when she grows up, she has to have a limb amputated because she has this autoimmune disease. So I wish people wouldn’t say that she can’t eat sugar. I wish people say if she just had some cinnamon, that would cure it, that she doesn’t really need insulin, that she’s going to get her limbs amputated, that she will go blind. I wish people wouldn’t talk about all the awful things because, with really great control and great technology these days, you can really achieve an A1C under seven. You can really have close to non-diabetic numbers and you can live a great life. And it’s not like it always has been with people who do not control their blood sugars that have things like amputations and blindness and kidney damage. And to say that to young children, I thought was cruel and just mean, and just wrong on so many levels.

Just some things you wish people wouldn’t say, here’s the few to make it short. “Oh, going healthy, I see.” Or, “You can have one piece of cake at least,” or something similar to that. “It only has 20 carbs,” or, “Take this supplement. It’ll cure you.” I’ve often had people, waitresses at restaurants, when I opt to have ask if they have lower sugar options, a waitress told me, “Why do you want that?” And I said, “I have diabetes.” They said, “Well, why are you at a restaurant? You shouldn’t be here.” So I’ve had a lot of rude remarks. People thinking, because you have diabetes, you can’t eat this or that or judge you when they don’t even have it themselves or understand it.

The biggest thing that kind of frustrates me is when people say, “Oh, I didn’t know you could get it at that age.” I understand why they said that because at the time when I was diagnosed, I didn’t know I could get it at that age either, but then I feel like sometimes then I have to educate and sometimes it gets exhausting. It’s not a job that you signed up for, but it is definitely needed in this world. So I think I get more frustrated than I need to, but having to be that constant advocate and salesperson essentially in a nutshell for type one diabetes, it gets really exhausting. I also don’t get that offended by the diabetes jokes on big social media platform like, “Oh, this cookie’s going to give me diabetes,” but I do get frustrated when people say, “Oh, you can’t eat that. Or can you eat that,” like asking if I can or if I can’t because … I don’t know. How do you explain to somebody I can eat whatever I want. It doesn’t matter. It’s the same thing if someone was like, “Oh, you can’t drink that.” I don’t know. I don’t think anybody should ever set boundaries on somebody that they don’t understand their predicament. That’s something that frustrates me, but I am definitely very lenient and understanding with people just because I was in their shoes not long before. I think that’s key for people to keep in mind. We all … Nobody has a bad intention in the things that are coming out of the words. Some do, but most don’t. Truly, education is what’s going to make the difference. Yeah, not too many things other than people asking me like, “Oh, I can’t believe I didn’t know you could get diagnosed at that age,” and asking me, “Oh, can you eat that?” Those are the two main ones that I think frustrate me the most. Yeah.

What I find really frustrating is that of all the people who have diabetes, 90% have Type 2 and only 10% have Type 1. So when people hear that you have diabetes, they either assume that it’s Type 2 or don’t know that there’s a difference between Type 1 and Type 2. And they say ignorant things like, “You must’ve gotten it from eating too much sugar.” Or, “Can you even eat that?” “Can you have that?” Or they just don’t keep their opinions to themselves. A lot of the times their information is wrong. “Oh, you have diabetes? My grandmother has that.” It’s not the same. It’s not the same.

I wish they wouldn’t say anything that they don’t know what they’re talking about. It’s insulting when they think they know what I should eat, that they think I need insulin if I’m having a low blood sugar.

People think that Type 1 and Type 2 diabetics are the same and that as a Type 1, we can fix it or our parents let us eat sweets so that’s how we got became a Type 1 diabetic as a kid, or we were too heavy or things like that. They suggest of how I can turn it around and it just makes me cringe because that’s so far from the truth. We’re the same but we are so totally different in how we treat ourselves and what happens within our bodies and at 50, let’s see I’m going on 52 years of being a diabetic, a Type 1 of course.