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How many people in your social circle have made an effort to understand your experiences with T1D?
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Most people. This probably implies one of two things.
One, my dunbar number is exceedingly low, or
Two, I must have luckily a very well informed group of friends, colleagues. and acquaintances. ĀÆ\_( Ķ”āāÆĶŹ Ķ”ā)_/ĀÆ
I don’t really understand the question. My health is not something I discuss with people I socialize with. Some don’t even know I have diabetes. The husband of one couple we socialize with is also Type 1 but not as many years as myself so we discuss the problems and offer suggestions to each other if there is a problem.
When I was diagnosed in 1980, I learned right away that I should tell my friends, family, and co-workers that I have diabetes because I often need their help when my blood glucose bottoms out. Sometimes it had been hard for the employees I supervised to tell their boss, she needs to have some orange juice, but they always figured out they could go to one of the other supervisors I worked closely with to figure out how to get me the help I need. Since I mostly worked in health care facilities, they quickly learned that if they got a nurse to come to my office, I “obeyed” the nurse immediately!! Even now that I have CGM and Tandem Control IQ, I still can have episodes where I get foggy and my friends know exactly what’s wrong and I’m pretty obedient!
Iām not shy about telling people I have it. And Iām never was shy about taking my shot or doing finger sticks in public. āEveryoneā knows Iām diabetic. But nobody asks about it.
I don’t advertise it frequently, but when I do, must people have no interest in knowing anything about T1D. I sometimes get asked stupid questions like ‘Is that the bad kind?’
People ask me that too. I usually explain the difference.
Very few. I’m only asked if food is involved in a social gathering and then it’s a “diabetes police” question.
I call it the Gilgamesh syndrome. “This could happen to me. ” A thought too terrifying to allow to flit across one’s mind. Avoidance, anger ensue.
Social circle? I know I am alone.
Many people throw ‘diabetes’ all together in one catagory; and do not care to know the dif between 1 & 2. when I define it, they don’t seem to care.
I don’t talk about unless someone asks. It’s awkward to talk/ask about any disease. Taking a trip together would be another matter.
I canāt think of a single close friend, or even family member, who tries to understand how my life is affected by diabetes. I think itās partly because I make it look like itās easy, (though i can complain too!) but it makes me sad that they donāt take any interest in such a major part of my life.
My answer is “Other” because very few people, if any at all, in my social or even family circle who do not have diabetes have any real interest or understanding about what life with diabetes is about – let alone make any effort to understand. I usually get unsolicited and well-meaning, but poorly informed judgmental advice.
I am fortunate to have a network of several friends and colleagues of all ages, genders, and socio-economic status who live with T1, LADA, T2, and/or pre-diabetes. We “get” each other and honor the myriad experiences & challenges of things life throws at you living with diabetes.
I usually get the blank stare, letās move on to something else kind of look. My wife attempts to understand, counts carbs, most of the time gives me a timeline for meals. sheās really good, but it took a long long time for her to understand the total frustration this disease can be. There are times I crawl into a corner and cry. But you better not let it last long as the TikTok of T1D will rear it’s head on you in short order. Just had my Endo visit and he commented that my A-1 C was going up. I just told him Iām tired and really want a break. it was enough to get me back on the bandwagon.
I’d have to say no one “tried”, but 2 or 3 people (Mom, husband, friend) have found things out because of being around me.
Like others, I also get the “blank stares” if I try to explain things… and the “diabetes police” are always willing to share unsolicited and unneeded advice!
S as someone has written before, unless you get it, you donāt get it.
I chose most people, but I do not talk about my medical concerns a lot from my point of view. I have too many medical concerns and diabetes is one of the easiest to live with or talk about.
Diabetes was easy to explain to my friends but many family members didn’t seem educated as well.
Some family, friends and co-workers have all made an effort. It is very much appreciated but I don’t expect anyone to have to learn about it. Early on one of my sisters was great. She could tell when I was getting low and would hand me a soda or go to the drive through if we were out. Years later she herself was diagnosed with Type 1. š
Iām old & sort of isolatedā¦COVID increased my isolation. Havenāt been participating in any BLM, peace demonstrations, etc. But I check my bgs and take shots in public. My family of origin was very supportive. My immigrant (& non immigrant) neighbors keep on eye on me; I know I can call on them for help. When I go to demonstrations, I remind at least one friend to put sugar cubes in my mouth if my face turns white or I act erratically. And NOT to call an ambulance; thatās $500 down the toilet. In past I let intimate partners know (if the intimacy was sustained). In the 1950ās and 1960ās I was cautioned not to let prospective employers know I was T1D. After you land a job, tell at least one trusted co-worker. I never step outside my house w/o at least one blood glucose monitor and at least three sugar cubes (four grams sugar each) in my pocket. Also carry sugar cubes in my jacket and backpack. If running errands, I also carry two syringes of glargine and two of lisproā¦if the big earthquake hits, Iāll last at least a couple of days under good control.
I put some as most of my friends or family know I am diabetic and they know I could have low blood sugars so they know enough to give me sugar if my blood sugar goes too low, but I am sure most don’t know how complicated the disease is to keep under control and I don’t expect them to know everything a diabetic would know.
I answered few as my social circle is my elderly aunt I am currently caregiving and my husband. Caregiving and my husband’s chronic medical issues have eliminated any social circle. Two people doesn’t even make a circle š My aunt has been curious about the pump and what it takes to manage T1D and asks a lot of questions.