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Do you feel like your close friends have an understanding of your day-to-day T1D management?
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With a brother also TYPE 1 it’s not an issue family wise. The NON-diabetic family members know how to test my levels, where the jel is, and the sweetened drinks are as well as symptoms of lows (I’m prone to).
My goal is never be a hindrance or be disabled and so far succeeded.
My wife yes, no one else w/o T1D.
I’m not shy about saying when I have to take T1D into consideration, so people know it’s a big factor for me, but I don’t think any of them truly understand how big a factor it is in literally everything. They only get the obvious, surface-level things, like food (which they don’t really understand – why doesn’t anyone know what a carb is?!) and having a routine. Things like not being able to focus for too long without checking my BG or making sure I have snacks with me when I go for a walk. I honestly don’t think they ever could.
I selected “other”. Aside from my wife, my friends have very little to no idea of my day to day and minute to minute understanding of my T1D management. I pretty much keep it to myself. On the otherhand, I share more of my Celiac disease management, because my friends usually want to share food or a meal, which I usually don’t eat. I provide my own food.
I know, my doctor knows. Thats about it.
Not sure anyone can understand unless they have T1 or have a child who is a T1
Like most people here, my husband knows, and I have one friend who’s a hospital nurse, so she’s interested and asks me lots of questions. The rest ignore it, and I encourage that.
Other than my husband and sons, no. Pre-pump things were much more difficult with friends as in the mid-west everything seems to revolve around food. Those darn pot-lucks!
Most of my Closest Friends are also T1, those who aren’t have become very familiar through our association
How could they?
I don’t have close friends do can’t answer this exact question. But with family and acquaintances I rarely have needed to share info about management, unless I needed a quick fix to a low bg level.
Like many of the other comments submitted, if you’re not a T1D, you can’t understand. My roommate didn’t give me a glucagon shot once when I needed it (after many teaching sessions on how and when to use it), anyway, after the EMT’S left, I asked “why didn’t you use the glucagon emergency kit?” the response was “I thought I was only supposed to give that to you when your sugar was very high” UGH!
Exactly.
Even my friend since 3 years old has no clue. It’s not them so they have no interest.
It does not matter that much to me if my close friends have an understanding of my day to day Type 1 management. What they do need to know is symptoms of being low and what to do. I always let my exercise instructors know that I am diabetic and to remind me if they hear my pump alarm. To be honest, I do not have a very good understanding of all the challenges my close friends face whether that is a physical or mental challenge. I am a work in progress and need to improve my listening skills when someone is sharing a concern, an opinion, an idea.
They don’t but it’s funny when they think they do. A friend of 30 years told me last month that she “knows” I need to each lunch at a specific time every day. That hasn’t been the case since I started pumping in 1992. The fact is, I usually don’t eat lunch at all unless I’m meeting friends. They all do understand that I might need to pause to eat jelly beans when we’re hiking.
I feel fortunate to have two best friends that understand my T1D and watch out for me. I have a son who is a firefighter that deals with folks all the time that are high or low or…..I have a friend/neighbor that was dx’d in her fifties like me so when we walk our dogs together we talk T1d a LOT! And best of all, my husband who totally gets it! I am truly blessed……
Even if my friends or family know I have to look at what I am eating to figure out how many carbs I am eating and that I enter that into my pump, I really don’t think people realize how often I have to think about my sugar levels to make decisions throughout the day. They know general things, like exercise will probably lower my blood sugar, but they don’t understand how the fat and protein affect my sugar levels also. Heck, it is difficult for us diabetics, I certainly don’t expect and average person to understand everything.
Close friends? Few and far between because I have moved soo often over the years. I have a few ladies I’m close with, I’d say their understanding is general. I keep my pump and therapy hidden for the most part and don’t make it a big part of my social life. So, I’d consider their knowledge more general and less specific to my daily maintenance.
This poll underscores, for some, the solitude and loneliness associated with diabetes management. This must be particularly isolating for young maturing diabetics. Peer support via group therapy seems a logical and practical method for easing the pain of isolation. Personally, I never had this resource and aside from social media platforms do not see the medical community working on this. I hope I’m wrong here but the mental health crisis is growing exponentially!
Agree with most here. My husband knows the most but if I couldn’t care for myself, he’d have to know a LOT more. Luckily, my lows do not affect me much. I’ve been as low as 19 and been able to care for myself (was having a wrestling match with a vacuum cleaner bag many years ago and it was winning – know better than to do that now). Friends vaguely know. I have one friend that when we go somewhere, she always brings bags of food. I love her for it.
I selected “Most or all of them have a general understanding” because most of my closest friends are friends from high school who knew me before diabetes and were around when I was diagnosed at 18 and learned a bit along with me as I progressed through multiple daily injections, and then pump therapy. Some of my friends do understand more than others, especially one of my besties who traveled with me and was my roommate for several years. She saved me from severe glycemic episodes on several occasions and I owe her my life.
In my opinion it is hard to “completely” understand what it’s like to have T1D unless you have it OR you or have been directly helping care for someone with T1D.
I’m a homebody and it’s mostly just my family. My type 1 children 100% get it. My bf and his mom even after almost 5 yrs are still learning. When the few friends I have, ask I gladly answer. But it’s overwhelming, so they don’t ask often and that’s fine with me. They know lows need sugar and highs need insulin. They support my low carb way of eating and my obsession with water and staying hydrated.
Well, my closest friend, ie my husband of almost 54 years, clearly has seen the most of how I manage, though my 18-year-younger-than-me neighbor who was also diagnosed at 8, must certainly have the best understanding of how it feels. And I was very surprised, as an adult, to realize that the sister I was least close to as a child had understanding seemingly about comparable to my mother, who had initially managed it.
But, aside from one decades-long friend who has passed — a person who was sympathetic, smart, educated, and seriously interested, and had a lot of food issues herself and became type 2 in her later years, which I then certainly gained much more understanding (and sympathy) for — most of my close friends over the years have had very little understanding, I suspect,
Not anymore. My closest friend recently died. We haven’t socialized with anyone for the past two years. My spouse’s family are the people we would be with for holidays. Three have been dx with type 2, but one would never know there was any thought at all to food choices, portion sizes or timing of meals. Not sure how soon we’ll be sharing a meal together again.
The stately pleasure-dome is a group of people aspiring for the best. Some know best. Some only think they know best. The later group is much larger than the former.
But Coleridge’s poem Kubla Khan. also included a decree. It seems those thinking they know best are all offering decrees. Those of us who know best are quintessentially much more modest and much more tentative.
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Yes !!
No one, not even another T1D can truly understand another’s individual daily T1D management. They can, however, have a better understanding than those without T1D. I have a close friend who was an RN, and she’s really clueless about daily management of T1D.
I agree..
So true about people like nurses or even dieticians who think all diabetics are alike, and that they as professionals know what we need. They have very little idea, since each of us has completely individual requirements. For example, when my husband (not a diabetic) was in the hospital, they automatically put him on a low fat diet and he lost 10 pounds in 8 days. He was of normal weight, and they should have fed him well enough to maintain his weight while he was healing from an infection. And I have lost weight unintentionally during lockdown. I hate to think what would happen if I were hospitalized suddenly. They would give me a low fat diet and I would starve, as well as become underweight.
Just when I think they are getting it – they ask me a question that assures me they know nothing. Like, “should I get your insulin?” when I mention I’m having a low. Frankly, I don’t think even my husband has a handle on it.
No one understands T1D completely until you have it yourself. I lived for 17 years with my T1D husband, but it wasn’t until I walked the walk did I ever understand the disease completely. My T1D is LADA and his was juvenile. When our son was diagnosed, we were both his mentors. I couldn’t sleep when he left for college, but he had become independent with his pump. I must say that even the Drs. I see don’t know as much as you like about T1D. When my husband was in a nursing home, they treated type 1 the exact same as type 2 diabetics. They had a chart about insulin dosages and had to follow the chart. It was so frustrating for all involved and he was termed Non-Compliant.
I have a couple friends who have a pretty good understanding about carbs and insulin. They also know that if I say I feel weird, my BG is most likely low and ask if I need sugar.
The stigma is real. Most don’t want to know because knowing would mean acknowledging the possibility that they too could one day develop autoimmune diabetes.
Many of my close friends have an understanding of what day-to-day T1D management is like because (1) several of my closest friends live with T1D themselves; and (2) several close friends without T1D have a modicum of understanding – or at least respect for what I go through – because I have communicated and educated them on some of the basics of what life with T1D is like and all about.
I would say one and none. One friend had pancreatic cancer and went through a surgery that removed most of her pancreas, and she uses a pump. She says she is not technically a diabetic, but I don’t know anyone who gets it like she does. The rest of my friends will ask me if I’m okay when one of my alarms goes off, I just tell them yes or no and take care of the problem myself. They don’t really get it.
I don’t have any more close friends. Covid isolation, caregiving a very elderly relative, and husband’s health issues have eliminated friendships. When I had close friends, they only had a general understanding. Most care to know about the details of T1D management.