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Diabetes-related stigma can range from one-off negative and misinformed comments to more pervasive experiences that lead people to feel they need to hide their T1D. In what situations have you experienced diabetes stigma? Select all options that apply to you.
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NEED to hide is the dead wrong way to phrase it. I do not share my sexual health, my psychological health, my dental health with complete strangers/superiors. Why on earth would I ever share an intimate, severely personal health condition with people I neither know intimately or trust profoundly? Unless we have shed/shared blood together, I will never tell you many intimate things, information to which you have zero right. I do not NEED to hide anything I prefer to not share until we know one another very intimately.
I have never felt or thought that I need to hide anything about living my life with T1 diabetes. It is what it is and part of my life experience since 1962. I do what I must do to take care of myself as best as I can no matter what other people think.
Unfortunately I have run onto situations with some people, particularly in the health care field, who think they know everything about what diabetes is and isn’t. These overexcited and arrogant folks have proved to be truly clueless about what it is like to live in a body with beta cell dysfunction and fluctuating BG levels … sadly, some of them are primary care provider NPs, PAs, and even a few RN and RD CDEs.
People with medical credentials can actually be the worst. There’s a lot of outdated D info that gets stuck in their heads. Especially T1 stuff because it’s more complicated, and rarer, and so only touched on in a cursory way in a lot of med training. But the credentials mean they Know Stuff! So you get things like “You’re too old to have Type 1” coming out of the mouths of people who should know better but haven’t revised what they picked up along the way 20 years ago cuz it just doesn’t come up very often.
I’ve been pretty lucky over my 69 years on this trip in finding many in the medical community who give me some credit for learning from experience, and admit that first hand experience is extremely useful. I don’t think anyone who hasn’t had to depend on insulin to stay alive ever has the the same sensitivity to its variations in effectiveness, whether it be weather-related, or amounts of exercise, or a thousand other variables.
I’m frankly proud of still being able to walk a half mile to get my groceries and insulin. I don’t ever discount genes and luck, and have almost always tried to respect the challenges. It takes a certain amount of dedication, but most worthy projects do! Getting pretty old is pretty great!
Similar to my experiences. Part of my life since 1962,and never felt hiding it was a reasonable option..
And, yes, medical and health-related people have frequently been surprisingly ignorant and confidant in their ignrance.
Little things. At a birthday party last week a friends said that I wasn’t “supposed” to eat the cake. I said that I can eat anything I want as I watch it very carefully. This coming from a very overweight person. People in glass houses….
At bus terminal
Never personally experienced anything, but plenty of “negative and misinformed comments” in the media from time to time. “You’ll get diabetes if you eat that!” jokes. I don’t like to be all precious and hypersensitive but at the same time it’s a form of ignorance I don’t want to just let pass. Not that you can ever cure stupid, but it’s hard not to want to try.
I love your last sentence:
“ Not that you can ever cure stupid, but it’s hard not to want to try.”
I might have to use that in many different situations!
Loved your sentence “Not that you can ever cure stupid, ” and you are right…. we can’t cure stupidity and ignorance, but as a nurse I may be able to sedate it! Lol!
T1 is difficult in all situations, even if people I’m with know that I have T1 having a low, is the worst.
I answered, “I have never experienced diabetes-related stigma.” I have experience some misinformed comments throughout my life. But, nothing has ever lead me to hide my T1D. I’ve always made sure enough people in my work environment and social environment knew that I am T1D, and what to do if my blood glucose goes low. There were times when I did not bring up my T1D, such as at job interviews.
As noted by others, I have heard negative or misinformed comments from time to time but never felt I have experienced social stigma. Wearing my devices has opened up some interesting conversations and offered opportunities to help others with their D management.
As an RN of over 45 years and a T1 for 58+ years, I feel I have seen and heard it all.
1. Oh, so you are DIABETIC? (Last heard this week with an orthopedic trainee). Answer: No, I am NOT diabetic, I HAVE diabetes.
2. Friend saying, I did not know you are diabetic (after explaining she had been diagnosed with heart failure). Answer: If I am DIABETIC you must be a heartfailuric!
I do destest being labelled by my condition.
Case manager at coffee break: “I don’t know anyone eating as much sugar as diabetics”!! So told her, well when my blood sugar drops down below 40 I am sure you want me to eat sugar!
Then all those “should you eat that, you shouldn’t eat that and worst of all “do you dare to eat that”?? So nowadays I just ask “Is it poisonous? 🙂
I am also a pest to my insurance company, that really have no clue, but thanks to a great endo doctor I get what I need and want. Type ones do not exist for Medicare companies. The information and booklets they send me does not even mention T1, and the information is stranded in standards from the 1980′!!
Primary care doctors, and their NP’s are also badly informed about diabetes, and especially type 1. But I stop here! 🙂
Have a nice day folks! 🙂
I so agree with you! As a dietitian and diabetes educator for many years I heard so many awful comments from peers etc especially about what I can and cannot eat. I hate being called diabetic and have had T1D for 68 years. Thanks for your comments.
I answered that I have never experienced diabetes stigma. I have always been open with my employers and co-workers (I’ve always had employers who are very open so I’ve been very lucky) so they know what to do when I go low. But I know THAT, before I was diagnosed, I was equally ignorant about diabetes. In 1973 I worked for a school for emotionally disturbed (that’s what we called them then) teenagers and knew that one of the kids had diabetes. He went on a bicycling trip and I couldn’t understand why he kept eating chocolate candy. Of course, I knew nothing about diabetes back then so didn’t understand what happens when your blood glucose goes low, or even why it does. None of us staff knew anything about diabetes so Kenny was probably pretty good about knowing what he needed to know about it. No blood testing back then! I don’t think I ever said anything to him about his chocolate bars but did talk about it with other staff and there were as clueless as I was. That all abruptly changed in 1980, when I was suddenly diagnosed with “juvenile” diabetes at age 32. I often think about Kenny and wonder how he fared both with diabetes and the other problems that brought him to the school.
I clicked off 6 items, and will say that all, or most, were due to ignorance rather than attempt to harm or stigmatize. The most “hurtful” have been by so called medical professionals who group the many “types” of diabetes mellitus as all being equal. The positive of this, I have been asked to help rewrite hospital and surgery center procedures.
The more common comment is “… you can’t eat that”; in response, I gobble “it” up and say, “see, I ate the whole thing”.
I was told by a supervisor, after two co-workers informed him, that I was checking my glucose in public – back in the day we had to use glucose meters – to go to a private area in the future to do this. At the time the co-workers saw me do this I had my hand under the table but they heard the click of pen that stuck my finger. I quit this job after three months! I knew what they told me was not legal but I just didn’t feel like fighting the fight. “Not that you can cure stupid” certainly applied there!
For diabetes stigma, I’ve been diabetic for 33 years. I’ve heard whispers I am a drug user, I’ve heard resteraunt staff make comments, I’ve had bosses, friends etc make comments. We have to educate people on what we are and what we do. You will notice no tv shows actively show diabetics being diabetics. There is no told show called my diabetic life. We have to educate others.
I certainly have noticed a whole lot of wrong information, sometimes very seriously wrong, imparted by health professionals as well as members of society in general, but usually I don’t feel stigmatized. As a child, I guess I did, when learning that a friend thought if I didn’t eat so much I wouldn’t have this problem, and that another was disgusted by the thought (not even the sight) of my using my stomach for injections, for instance.
LOL I do, these days, find all the Ozempic ads and other weight loss for “diabetics” incessant advice on the airways and in newspaper stories and ads really annoying, though.
On social media when people tag super sugary drinks/ice cream/etc. #diabetes – just let me find other t1d content online!
Want to compliment those diagnosed 50-60 years ago with not just no CGM, even no glucose meters. The advertisements now show healthy and active people wearing a CGM (dexcom?), older happy people on various meds. Like Annie, as a kid I wonder if one of my classmates had a chronic illness they hid.
I might be the nightmare for TYPE 1 diabetics? In the same (or closely related) field: restoration going into places damaged by fire/floods/ biological problems like sewage or mold for almost 50 years; changed jobs and have been recruited as a TYPE 1. While I’ll ask if any “whimpy-weak stomach” co-workers want me to go into a nasty/poop full restroom to test and inject, never once told to go.
Maybe my personality or confidence, I placed my phone to show my “juglucco” app on an hour drive. Explained with this I’m able to be normal and dared him keep up. He watched me carry a sweetened drink into the crawlspace as he swatted spiders (didn’t need it), and honestly makes me work harder because I’m 3 times his age (18 to my 63), or a T1d, the cute homeowner watched….yeah sometimes there’s a challenge!
At work with one peer/manager. Put in my review that I needed to eat better.
Maybe I’m just unaware, but over 58 years I’m not really aware of anything but sensitive sympathy in social circumstances. I must live in a great crowd of people!
After living with T1 for the past 68 years I’ve experienced ignorant comments from many, both close and complete strangers. Before my use of a pump and CGM I’ve heard ‘do you have to do that here?’ as I used my meter to test and syringe/vial to discretely inject before eating my meal at a restaurant. I’ve also had to deal with security personnel when I used my meter and syringe in the public area of a restroom at a casino/hotel. The worst was in 2007 as a volunteer participant at a medical school where 2 nd and 3rd year students learn how to interact with patients and what questions to ask those diagnosed with diabetes. For over a ten year period I had volunteered to be a part of this training because I wanted doctors who actually listened to and heard what their patients were telling them. Some of the patients were just acting the part and used a script to answer the questions, but there were others of us who were answering from our experience living with diabetes. As we assembled in the large classroom the 2nd yr students were introduced to the “diabetic” by an MD instructor who told the students that “diabetics are lazy, rarely pay attention to anything they’re told regarding diet and the need to exercise and very often don’t tell the truth.” That infuriated me, and no doubt, caused my blood pressure to rise. When it was my turn, a nervous student started reading/asking a question regarding my ability to urinate in a steady stream. I interrupted her with my comments directed to the MD/Assistant Professor. By the few moments later, when I was asked to leave, they all learned that I had lived with Type 1 for 50+ years. That I used MDI on a 24 hr. basis and guided by frequent blood glucose testing, ate a moderate, restricted diet. My exercise was the walking involved in 4 hour photoshoots in large botanical gardens and nature reserves. I had a lot more to say…but was told to leave. That was the last time I was allowed to be in that training program. The following year, when I called the program director, I learned that the school had totally revised the use of scripted patients in the training.
This medical school did a poor service to it’s students and patients. I would give them an failing grade!
I have also experienced many of the situations others have described. The strangers who say, “you shouldn’t have that”… to friends and family giving me grief about being exhausted (I wonder what they would say if they had an unresponsive 40 blood sugar), etc.. Or the Atlanta airport TSA employee who shouted very loudly across the 10 or 20 gates, “DIAAAABEETTTICCC!!!!!” I actually have no idea why they did that.
Or, the awful doctors who make cruel comments… not all doctors are like this, but they are out there.
Then, there are just curious questions from strangers to family… those depend on the question, but I’m happy to talk anyone’s ear off, so you ask me questions at your own risk!! ;p
I hid my diabetes one time (maybe more than that, but one is standing out at the moment.) I wanted to get my ears pierced, but they wouldn’t do it on a diabetic. So, I left. Then went back on a different day and didn’t say I had diabetes. That was a very long time ago, though. I imagine if I wanted to pierce my ears today, it would be different… at least, I hope so!
I don’t feel the need to hide because I don’t care what others think. I am not my diabetes, and if someone makes assumptions I either school them or write them off entirely.
I think most comments are well intended, just misinformed. I was 18 when I was diagnosed, so can remember a time when I was too was blissfully ignorant about what diabetes is and how challenging it can be. Heck, I’m 27+yrs in, and still figuring it out! Most folks’ only exposure to diabetes is what they see in media, which isn’t much. So if I do get a misinformed comment, I try to make it a teachable moment.
There was one time I was called out publicly for my T1D in a negative way. I was on a guided glacier hike in New Zealand with friends and a group of strangers. Hiking tanks my blood sugar. Part way through the hike, the guide overhead one of my friends joking that I was hogging all her snacks and me telling her if she saved me from a coma now, I’d buy her dinner when we got down. The guide got mad and said, “why didn’t you tell me you were diabetic?!” It honestly hadn’t occurred to me to announce it, because I had noted it on their form. The guide then called the group together and shouted “She’s diabetic. Does anyone else have any PROBLEMS I should know about?!” Ouch. A funny man in the group volunteered that he cries like a girl when he’s scared, which diffused the uncomfortable situation. I then had to follow two paces behind the guide for the rest of the hike so she could keep an eye on me. I get that she was responsible for keeping all of us alive up there and my condition made that job riskier for her. It was still a beautiful hike, despite the public shaming!
There are a few certain jobs where you really should confide you have a serious chronic condition such as insulin dependent Type 1 diabetes. Like applying for Federal Government jobs, because they will do a detailed search and find out sooner or later. Even GS-2 file clerks get fingerprinted! With computer algorithms, it’s sooner. On your application just add, “Under excellent control.” Then, if you want, add the doctor’s name who will confirm. Failure to tell the truth can itself be grounds for dismissal for Federal jobs. And if you want to drive 18 wheelers interstate or fly planes, you better tell the truth. I’ve heard that T1Ds can qualify under certain conditions. If refused employment, there are now free legal remedies.
If you’re going to march or demonstrate, make sure your affinity group knows what to do if you seem “spaced out.” Show them where you’re carrying the jelly beans. Stay in your affinity group. If you’ve already been trained in non violent resistance and plan to be arrested with an affinity group, make sure they know to back you up in telling the police everyone’s medical needs. If your insulin, syringes, CGM, pump, or necessary food is taken resulting in harm, have witnesses and prepare to sue and win.
Participation in sports
Registering for College / University
From ages 13 to approximately 50 had to hide my T1D mainly for job stability. At age 61 my T1D was used to terminate my long-term employment. The employer refused to accept a letter from a doctor. Large USA-based companies do this regularly. T1Ds should be aware so they try to secure employment in more secure environments such as government based.
I’ve had diabetes for many years. I remember uninformed comments from people I didn’t know well. When I felt comfortable, I would also take the time to educate them a bit better.
Most of these experiences were in the 70’s
Before A1C tests, we logged our numbers. A nurse once said about the log- all diabetics are liars. (dry-labbing)
Was told by a girlfriends family that “diabetics make bad husbands.” Also just weary of confusion about T2Diabetics too.
No comments were really negative in a “put-down” way, the people were just misinformed.
1. Had a peer at work who refused to walk to a meeting with me. “I don’t want to have to save you”. Also had a peer who was T2D and was constantly suggesting food that was ‘safe’. Some good suggestions, but not a topic of daily conversation I looked forward to. 🙁
2. School: Middle School – kids and teachers would stare/ask what I was doing when needing to go to my locker for scheduled snack (back in my day, no one went to lockers except once during the day and no food/drink in the rooms)….
3. My extended maternal family never cared to learn enough about T1D to be helpful. Every family gathering was “are you supposed to eat that?” with every mouthful.