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When They Mean Well
Meagan Esler
Sometimes it isn’t a stranger or acquaintance giving you a hard time about your diabetes. Sometimes it’s a family member or close friend that says something hurtful about your diabetes management. And that is far more difficult to hear than the guy at the table next to you in a restaurant or some lady sharing an office with you at work.
I had a loved one who had known me and about my diabetes for more than 13 years suggest over breakfast one day that I get stomach stapling surgery to cure my diabetes. That’s when I realized that pretty much no one without firsthand experience with type 1 diabetes understands it.
The media don’t always help people understand diabetes. Cure is a strong word to throw around, and miraculously simple cures are claimed all the time. You’ve seen the “Cure Diabetes with Cinnamon!” claims in the past, and other ridiculous so-called remedies. In her defense, this particular individual who suggested stomach stapling to me has a family member with type 2 diabetes. She herself was overweight and had surgery, in part, to help keep her from developing type 2 diabetes.
That kind of surgery would likely never be approved for someone like me. I could stand to lose a few pounds, but it’s nothing a little more exercise and some dietary restrictions couldn’t fix. But stomach stapling surgery will not cure my type 1 diabetes.
I wondered though, how anyone could think I’d live for 18 years like this on purpose. If there were a cure, I’d have jumped on it long ago.
Several of my friends with diabetes also remarked that their loved ones make inappropriate comments about their diabetes management. They insist strange things based on information they’ve heard or read about diabetes. They can’t seem to understand that this is our life, barring an actual cure.
I had just taken my injection at the table of the restaurant we were visiting when my friend made her suggestion of the stomach surgery. She didn’t say it to be mean, she meant it innocently enough. Still, the only thing I could do this particular day, over a plate of Swedish pancakes that I no longer felt like eating, was to inform her about type 1 diabetes.
Her comment had caught me off guard and I had to take a moment to collect myself so I could speak calmly. Thankfully my husband jumped in to explain the fact that my diabetes was an autoimmune disease and that there is no cure. As I fought back tears I explained that even if I was able to have the stomach surgery she had, I’d need insulin injections for life because my body no longer made it naturally.
This is my life and I’ve come to terms with it, but should an actual cure present itself, I’d be in line in a heartbeat. I felt like sobbing, and a little like shouting, but I took a deep breath and spoke as gently as I could instead. I still love her. I know she didn’t mean to hurt me with her comment.
I had wrongly expected her to know all these things, but had never taken the time out to explain my diabetes to her. All we really have the power to do is educate others about our life with diabetes, and to keep on living, and hoping that someday there will truly be a cure.
Categories: Cure, Diabetes, Diabetes Health, Diabetic, Surgery, Surgery, Surgery for People With Diabetes, Type 1 Diabetes, Type 2 Diabetes
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Diabetes Health is the essential resource for people living with diabetes- both newly diagnosed and experienced as well as the professionals who care for them. We provide balanced expert news and information on living healthfully with diabetes. Each issue includes cutting-edge editorial coverage of new products, research, treatment options, and meaningful lifestyle issues.
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Comments
Very well put!!!
They should just find a new name for Type I because every time I turn around somebody is adding insult to injury.
I have to add that this applies to doctors as well. Endocrinologists know all the "book work" about diabetes but unless you live with this day in and day out you just don't know. Everyone is different, every day is different.
I've had nurses in a hospital arguing with my husband about how he was going to do his insulin. They didn't have a clue, which is very scary.
This won't stop until there is a different name for type 1 diabetes.
I have been a Type 1 Diabetic for the past 50 years....Iam now 70 years old and still living and have alot of help from my husband of 45 years. My sibblings had no idea what diabetes was until 2 of them recently became Type 2 diabetics and one has become a Type 1 at age 60....so they call me whenever they have a problem....I help them out the best I can and tell them to go too a "endocrinlogist" who can help them out beter then me....I have been on the insulin pump for more then 6 years.
Ive had type one most of my life, and I totally understand wha tthe author is talking about. I stive to keep myself as healthy as possible-eating a very restircted diet, exercising reguarally (even when I don't feel lilke it)...People think I have brought this disease on myself due to lifestyle choices! i really wish they would rename type one diabetes so that it seperated itself from type 2-maybe people would understand it a bit better
Every time I see an article about curing or reversing diabetes with diet or other lifestyle factors, I write them to tell them it would be helpful to specify type 2, and explain what type 1 is. I often hear that editors won't allow the space.
Type 1's have a pr problem in this day and age of so much focus on obesity and the (type 2) "diabetes epidemic." I think we should start calling it "autoimmune diabetes.' However, if I ever try to explain type 1, people's eyes just glaze over, and they usually say, after suggesting for instance that eating raw food would cure type 1, that they were "just trying to help"- no matter how many times I have explained.
I am convinced that the diabetes organizations keep this confusion going on purpose. Their fundraising benefits. The type 2 oriented organization keeps babies in its photos, and the type 1 organizations keep the numbers of patients and avoid being an orphan disease.
I can so relate to your experience... thank you for putting it into words. Diabetes can be a misunderstood & lonely disease.
When I was in my early 30s and had been diabetic for 25 years, a coworker told me, "I thought only juvenile diabetics needed to take insulin." Now that I was an adult, I wouldn't need it any more?
The comment I love is "Can you eat that?" as I'm about to dig into something that would not be considered "good" for a person with diabetes. Yes, I gave myself a shot to cover that ice cream, and no, what I eat is nobody's business but mine.
Another one that grind my gears: "Maybe you shouldn't give yourself so much insulin," said with a concerned look while I am dealing with a low. Gee, ya think? Every time I get a low I make a mental note of the circumstances that led up to it and I adjust accordingly. But sometimes, you get a low for no clear reason, and having a person without diabetes offer advice really isn't welcome.
I can understand the desire for a different name for Type 1. And maybe that should happen. But officially separating the two types would certainly increase the stigmatization of people with Type 2 as the "bad" diabetics a hundredfold. And of course people with Type 2 are no more "bad" diabetics than are people with Type 1. (I have Type 2.)
After close to 50 years of Diabetes, and being 54, I totally understand what you are saying. I have been told several times that they "cured" Diabetes with insulin. As if to say, "So what is your problem???" I am firmly convinced that, if do not experience being a Diabetic, you will never really know how to deal with it. And the biggest problem, not all Diabetics experience what other Diabetics do. I really like reading about your experiences.
I was diagnosed type 2 on 7 May 2004. Before this happened, I had eatten a lot of peanut butter and drank a lot of coffee. I later learned these were supposed to keep me safe from the type 2. They didn't.
About a week after being diagnosed, my wife and I went on a highway pickup for the local Lions Club (we are members). After hustling around, I was quite hungry and went for a donut. A well meaning friend snapped "you have sugar diabetics, Michael, you can't eat that!" This Lady was like everyone's grandmother and meant well. She just didn't know I'd had a very small breakfast before going on the highway pickup and she thought that donuts were completely off my to-eat-list. I waited until she left and had a donut with my second cup of coffee. Then, we took the leftover donuts etc out to where I work.
I have to admit my coworkers ignore me when I check my blood sugar. Of course, I don't make a big deal of it. Have you noticed some folks are very secretative of being diabetic? I had a co-worker who went back into a store room to test his blood. At first, I did the same thing and then decided "screw it" and test at my work station. No one seems to either notice or care.
My friend meant well but was ignorant of diabetics. I have gotten remarks about my weight and being type 2. My father-in-law is on the bottom end of weight for his height and has been a type for 30+ years; I've seen people not believe he is diabetic. There is simply a lot of ignorance about diabetics.
thanks for this article - i thought i was being difficult when i get upset at comments people make like you shouldn't be eating that, or maybe you have diabetes because you ate too much chocolate (not that it makes any difference, but i was diagnosed when i was 9yrs old). i try to educate people about diabetes as best i can, and some are very receptive of the information, but some are not...and that's just how it's going to be.
i have one of the best examples of misunderstanding. my sister's dog was recently diagnosed with diabetes, and the veterinarian told her to find a diabetic that could help her...wow! needless to say she has found a new veterinarian that deals with diabetic dogs routinely, and that is what makes the difference - knowledge & understanding.
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