What is the deal with brittle diabetes? What do you say if someone asks if you have it?
I told someone yesterday that I have diabetes. He asked, "Is it brittle? My grandmother had brittle diabetes. It was so hard for her to control." I wasn't really sure how to respond, since I know people don't really use that term anymore these days.
What do you think?
I haven't heard that term in a long time too!! Yeah, people use to ask me that too- maybe that was their way of distinguishing T1's from T2's???
Although back in the day it was just juvenile vs. adult and that was soooo confusing so they decided to "market" us as Type 1's (now people are even more confused!)
Maybe it is just an old term because back then diabetics were more "brittle" because we didn't have all the technology to help us control it better.
Don't know- unless any of you diabetics ever hear about any scientific data that theorizes that some of us T1's are more brittle because we have a genetic marker that makes us more brittle???? It is hard to keep up on all the scientific data so if any of you know, please post.
Otherwise, I think the brittle thing is just a matter of how one manages his/her diabetes.
Laura
Oh, I'm sorry I didn't really answer your question on how to respond to their question.
What I have said is
"Not really. I am a type 1 diabetic which is really difficult to manage and takes a lot of work. It is not easy and can be very challenging and difficult. I can have insulin reactions since I inject insulin, but I am super healthy and take good care of myself"
Depending on the person, I might go more into it depending on their desire to want to know more and if I perceive them to be able to understand the difference between T1 and T2 - because I hate explaining it to people and then to hear them say something back like, "Oh, it is no big deal anymore and easy to live with now" or some other off the wall comment. You all know that frustration of misunderstanding, but I always just try to be polite and do my part in educating the public- even when I get weird comments!!
It was like if I answered that I didn't have brittle diabetes, it would minimize the huge impact it does have on my life, but I can't say that I DO have brittle D because I am in good control usually.
Then what threw me off even more was he said that his grandmother could never get her diet and exercise right to control her sugars. So by that point, I had no idea if she was Type 1 or Type 2.
It was just awkward all around :( And I was starting to feel low.
It is rarely used these days - think they may even call it something else but it still happens to some T1's. It can be a combination of factors. I've heard in the past that the uncontrolled sugars are usually do to depression and stress. It has something to do with the horomonal responses to stress which can send the person high or low very quickly. This is different from some of us who have some form of depression. The other reason I remember was digestion issues - things like gastroperesis. That doesn't mean that everyone who has a digestion issue has this problem too - far from it - just saying that it has been sited to be a factor. I believe it's only .2 or .3 % of us would be considered brittle. Don't think I'm wording this very well.....
Here's a link that might help .... http://www.bouldermedicalcenter.com/articles/brittle_diabetes_mellitus.htm
I think it's just an old-fashioned term to describe hard-to-control or out-of-control type 1 diabetes. My grandmother was a type 1 diabetic. She died before blood glucose monitors were commonly used, and she would fall into hypoglycemic comas often. My mother always said, "She was a brittle diabetic."
So, if someone said that to me, I'd tell them it's an out-of-date term, and that all type 1s have a hard time, but (a) right now I'm in good control of my blood sugar and feeling great or (b) I've been having a hard time managing my sugars lately, but I'm doing my best. (Depending on what the circumstances warrant).
I think it's important for non-type-1s to know that diabetes is difficult to manage, but we try our best.
Hi Zinger,look over in the group -Health Care Providers.Carol Cheney is a endo--and was kind enough to answer me on that same question.I had our regular doctor once call my daughter that when he was talking to us. This was at the time when she first got d. Our endo has never used that word.The word bothered me too.I was glad to get a answer.She also gives a link to ask questions.
[quote user="meme"]
Hi Zinger,look over in the group -Health Care Providers.Carol Cheney is a endo--and was kind enough to answer me on that same question.I had our regular doctor once call my daughter that when he was talking to us. This was at the time when she first got d. Our endo has never used that word.The word bothered me too.I was glad to get a answer.She also gives a link to ask questions.
[/quote]
Thanks for pointing that out meme.
An experienced endo once told me that this term is out-dated, so it sounds similar to what others have heard. But, I still hear inexperienced young residents and even endo fellows using the term. So, clearly it is still out there in the medical community.
I hate, hate, hate the term (would write "hate" more if I had the patience!) b/c it implies there's nothing the patient can do to improve her sugars. Even when I have wide fluctuations, I always feel I can work hard and at least make some improvements.
Hi Sarah,I hate the word too !
My boyfriend's father is pretty cruel with the wordings to describe my diabetes- he is type 2 and call me things like brittle diabetic and says that I have radical diabetes. His dad comes over and sleeps on the couch so he picks up on conversations between me and my boyfriend. We kicked him out two months ago, the mooch. I find the words hurtful, but tend to pour facts on him about type 1 and type 2, and brag about my Ha1c to get him off my case for highs that he over hears me and my BF discussing.
meh- what can you do...
This is so wrong and hurtful,I am sorry you had to listen to that.You are smart and take good care of yourself-so march on-!!
In my experience and opinion, not everyone who has Type I diabetes, if they would just stick to their diet and plan would have fine BS. Everyone's different. And there are people who for some reason this just doesn't work out. My son was like that. We were very vigilent in trying to manage his diabetes. It was VERY difficult. Even the medical staff and Camp Sweeney said he was hard to dose. Everyone is different and just because we have all of these modern ways to manage it doesn't mean that if you have trouble managing it you're not trying hard enough. I feel that this has been insinuated on this thread and others. Again IMHO.
Yesterday, I was filling out a parent permission slip form for my daughter who is also a T1 (I am too) and it listed medical conditions to check and it listed
"sugar diabetes"
Now that is really stupid.
I hope my post did not insinuate what you said. I am sorry.
This is just my opinion but I think the brittle term is just something people outside of the T1 community use to distinguish T1 and T2's- but I did read DougD's link he posted and now am a bit confused.
But, one thing I want to say to DDrumminMan is that over the years I've thought some diabetics must just have other genetic factors going on that makes their management harder- because although mine is hard, it seems like I've noticed others that it is harder for them- not because of anything they are doing or not doing- just because it is like their bodies are more sensitive- I don't know the right term- maybe "brittle" is the term!! That is why I posted the question as to whether there are other genetic markers in play here. I don't know.
At the very least, we get enough prejudices from outside the T1 community, we need to be really careful as to not have them inside the T1 community- like thinking if someone has retinaopathy that they must not have taken good care of themselves!!! etc......... so I am really sorry. I don't think that- I don't know why some have it easier than others- just my personal theory of other genetic things going on.
Also I am a parent of a T1 too.