@Cinderfella I agree I do the same thing, but even with the small group of people that know i always get some sort of judgment from people who just don’t get it and aren’t open to listening to you
Like @DiabetesOldie I can say that in my almost 50 years of having T1, I have never had anyone say anything like this to me. (Except once, when I was having some cake at a birthday party, and the hostess gave this sort of hysterical giggle and said, “You’re not going to go into a sugar coma on me, are you?”) Not that I’ve given it a great amount of thought, but I wonder if it is partly because I have never hidden my diabetes. All my family and friends and all my work colleagues know I have diabetes. I will mention it if it’s appropriate to the conversation, and I’m not shy about testing or injecting/bolusing in front of people. I think this may convey a certain confidence – I’m in control of things, I know what I’m doing, thank you, and I know more than someone who might try to tell me to eat more bananas.
The other angle is, people are probably exposed to far more un-knowledgeable diabetics than the educated, informed, experienced diabetics. Just the other day on the bus I was seated next to this fellow who had a giant plastic cup of pop, which I’m sure wasn’t sugar-free, and was munching from a big bag of doughnuts, while he was on the phone telling a friend that he had just seen his doctor, who wanted to put him on Metformin, but he himself didn’t think he had diabetes. I’m afraid this is the type of person more people encounter than the type of people posting here.
Hi @Terry4. I wish there was some “handbook” for this approach, but I’m not aware of one. For me, I think it was just a realization that if you bombard someone with reasons why they are wrong, they will just double-down on their original beliefs. And while we are focused on diabetes, this is a human problem, not specifically diabetic.
Take almost any flashpoint topic and there will be people on both sides that, in many cases, are uninformed. Consider the crazy things people say about other diseases, politics, religion, racial stereotypes, etc. People with Chronic Fatigue Syndrome were/are often characterized as “lazy,” “malingering” and psychologically damaged - “all in your head!” Recently, a study examined blood markers to show this is likely a valid medical condition. Imagine the comments these folks must endure from uninformed “friends.”
The approach of asking questions to discover “how people know what they know” is sometimes attributed to Socrates. He would ask questions that would cause people to think about the basis for their beliefs.
I’m a little hesitant to raise the topic of religion, but one of the best examples I know of is a guy named Anthony Magnabosco. His stated objective is as follows: “I initiate friendly conversations with people to see how they arrived at their deeply-held beliefs (e.g., Gods, karma, ghosts, politics, etc.), and then ask respectful questions to help them discover if the method(s) used are unreliable so that more reliable methods can be employed to maintain the belief and/or the level of confidence in the belief can be adjusted to be more in line with reality.”
His interviews can be found on YouTube. Try to look past whether you agree or disagree with his stance. The important thing is that he has friendly conversations on touchy subjects. Those he interviews generally walk away with positive feelings about the experience. Many come back for a second or third interview with no prompting from Anthony.
@beacher well I’ve only ever had these judgmental comments from people that know I’ve been diabetic for a long time so I’m not sure if it would make any difference if I was more open about it, but you are very lucky that you have not been subjected to this very often. I also think you bring up a very good point that there are a lot of very uneducated and uncontrolled diabetics out there that people probably meet more often than well controlled/ educated diabetics. Which also just proves my point even more that diabetics are all so very different to each other.
I wish we knew what beacher looked like. Perhaps beacher is very tall and authoritarian looking. I think it likely that friendly, young women get told more how to operate their illness…and everything else.
But, there’s two sides to every coin. My friend with another chronic illness gets pretty outta control. Since he is 6 foot four and has the terrifying (but also good) looks of ‘old russia,’ no one ever says sh*t to him about it. In fact, the police call me when he does something terrible and ask if they can come over and talk to him. He is quite proud of himself about that and claims that a good dose of insanity trumps the law in every way.
Now, it would be nice to have that level of independence, but it also puts him at risk in a lot of ways. If I start to pass out on the street, because of my baby face and non-intimidating appearance, I am confident that someone comes to the rescue. For him, people are too intimidated, even on a good day, to so much as speak to him. When he walks into a room, people have the appearance of having seen the devil - shock and instinctual terror. Now, he’s a nice guy. But, he gets away with a lot more than I ever could. At the same time, this gives him a lot more flexibility to not care properly for himself, which hurts him in the long run.
We make a good chronic illness team because I get resentful of people not taking care of themselves and I take it kinda personally and I draw lines in the sand and force him to get treatment. He keeps people from bullying me and provides additional ‘street cred.’ He is a great diabetes advocate because of his illness. He can recognize low blood sugar easily and is quite good in a medical emergency.
My guess is that you, Kimmi_D, need a tall, intimidating Russian immigrant to be the face of your diabetes public relations firm. Have him offer you pieces of cake at parties and tell people that you are the most competent and knowledgeable diabetic that he has ever met. This problem will soon disappear. If you are not far from Minnesota, you can borrow mine for a weekend. Works like a charm.
This is an uncommon practice and a conversational skill I would like to adopt. Asking questions is a great technique – Socrates was right. I think the key to do this well lies in posing questions unburdened with any kind of judgmental tone. It is an art. It follows the sentiment, “seek first to understand, then to be understood.”
@mohe0001 I had such a good laugh at your “get a Russian immigrant” comment! I love it! I think your right! Unfortunately too far away to borrow yours but I’ll add the idea to my list On the serious side though your very lucky to have someone like that It’s good to look after each other.
Having attended many different universities and worked at many different institutions in my life, I have had a lot of experience with telling people about my diabetes at some places and keeping it a secret at others. My experience has been that if I tell people about it, they never let me crawl out from under the rock of their condescension, policing, suppressing, and discriminating. People become like sharks sensing blood in the water, and my confessed ‘weakness’ of having a chronic illness makes them extraordinarily vicious. But at places where I have keep diabetes a secret, I am treated just like anyone else, which is how I like it.
When I was first diagnosed with diabetes in 1966, I had to go to a training course for new diabetics at the Joslin Clinic, and an old Harvard professor of endocrinology said, “Diabetes has a lot of disadvantages, but it’s one advantage is that it’s invisible, and so no one has to know you’re diabetic if you don’t want them to.” Now, of course, that one advantage is being increasingly stripped away by all the medical devices patients wear announcing to the world, “I am chronically ill, please discriminate against me!”
I really like your comment…
Personally, I have not experienced many situations with ‘know-it-alls’, and received only a few comments regarding “you can’t have that ?!”, when cakes/cookies were shared at work. More often it was a “I’m sorry you can’t have this stuff” comment. But I would just say, I’ll take some and have it later when I take my insulin, or on occasion, ate it then knowing it would cause my BG to go too high. But it was my choice, not theirs.
Ironically, I was the one who kept a loaded jar of Fruit Runts on my desk, shared with others, as long as there were always some left for me to treat lows ! I think that helped them understand that sometimes it was OK, and I was in control of deciding when.
This is day 3 of using the app. It requires entering a picture of each meal, Calories, fat, fiber, carbohydrates, and protein. Then one must enter blood glucose, and in my case insulin taken.
I am part of the study with Columbia University. If this sounds like a lot it is. Now the pay off is that the app will predict your blood sugar the next time you interact with the application. Soon, it will give me the projected blood sugar 3 hours later. Meaning I should be able to make better food choices to impact my blood sugar 3 hours hence.
This likely makes less sense for T1’s right now but as the application learns my habits and it evolves the goal is that we should be able to describe our food take a picture and it will tell us the amount of insulin to take.
You may think that we do this with carbohydrates alone right now? We do of course, but this is supposed to be individually tailored to our own personal bodies. Want some ice cream? Take this insulin and dose it like this (Square, or all at once) and you should get this result. .
I am doing the study to build the data base and give feedback on the process. They are especially interested in recruiting T2’s and are also recruiting T1’s. It is a two-week trial after which you can continue to use the application free of charge.
I think the pay is about $25, so it is lots of work for not much pay, trust me if you want $25, go mow a yard. But if interested let me know and I can give the study coordinator your email. To be fair, had I understood the full scoop of the work, I would have passed. But I said yes, and I do keep my word and I enjoying helping if i can.
@Rphil2, I love collecting data! I would participate. Unfortunately, I am no where near Columbia University. If you think I still can, please send me the info. Plus, predictive statistics are my fav!
Hmmm–I’m a diabetic and I avoid bananas (which I dearly love!) because their high potassium level doesn’t fit with my ACE inhibitor. Maybe she needs to talk to granny a little more!
Rphil2, I participated in this study last year–sounds like some bugs have been worked out (I was checking BG 2 hours after starting my meal–as a slow eater, I was finishing my meal < 1 1/2 hours before BG check, not really accurate for me). I very much enjoyed the discussions and info exchanged during phone sessions–very respectful group! Stay with it!
Mohe0001, I live in Tucson–only problem was coordinating phone time, especially during DST (Arizona doesn’t believe in saving daylight!). Go for it!
My favorite experience with a person who held an odd belief about diabetes occurred at my niece’s graduation party. A dear friend of her family, a stranger to me, was told “a sugar diabetic” would be there. As she was in charge of the desserts, she made a special Jello cake for me–sugar-free Jello and (I swear) a cup of Sweet and Low–"'cause I know you diabetics love your sweets!" I thanked her profusely for thinking of me, took a few polite bites (I can still taste it, 10 years later!), and asked if I could have the rest for later–pitched it before anyone else could be poisoned.
Back in 1966 when I was diagnosed, the most usual name of diabetes among the general public was ‘sugar diabetes.’