I don't mind talking about Bean's Diabetes, really I don't.
When people ask me questions and I can help them understand a little bit better what she deals with day in and day out, it's a good thing.
Sure, there are times I feel like a rambling idiot savant spouting out BG numbers and ratios and correction factors and carb counts and, and, and....
But when the 'stupid' comments start, I really want to tell them to shut the hell up!
For example....while in Georgia, I was asked by lots of people about Bean.
One conversation included the other person telling me about their sibling who had a T1 child (adult now) who had stopped taking care of himself and was now blind and had a leg amputated. Say What?!?
Other conversations included comments like "are her numbers in control now that she's using a pump?" and "since she got it so young, she'll be able to grow out of it, right?" and "my daughter has such and such, so I totally understand what you are going through" and "it would be so hard for her to be at this party and not eat any of the yummy desserts."
Thankfully I only have to see these people from time to time...and some rarely or never at all (seat mates on the plane)...which makes it a bit better, but still, why do people say crap like that?
The conversations that really get under my skin are the ones with people I have to see on a regular basis. Ones that have been in our lives for the past year that we have been 'doing' D.
Ones that have heard me explain things several times.
Ones that, by this point, should have at least enough of an understanding that they don't keep making the same stupid comments!
We were at a party this past Sunday. It was fun. We hung out with friends; the girls played with friends. I wasn't expecting to be there for as long as we were, but that was OK. We had just eaten lunch so we were 'good' there and with all the food there, I was able to keep the girls satisfied.
Ubergeek checked on Bean and had her test....460, lovely! Why can our carb count for Subway be spot on some days and so totally off on others?!?!
He comes out to fill me in and I have to hear comments like "oh, she's still having trouble with her blood sugar going high?"
About an hour later he checks on her again and she's at 236...nicely coming down, but on fast side. (Can't ever tell with her if she's going to run around like a banshee or spend hours 'dressing up' in her friend's clothes!).
Forty minutes later, she comes outside with her PDM in hand and shows Ubergeek the number...he happened to be sitting closer to the door she came out of. 62, to which he says 'juice box' to which she replies, 'um, already did.' Love it! Didn't love the 0.85u still on board, so she ate several snacks from her kit...none of the 'party food' interested her...other than the cake and I didn't want to 'go there' with her at that point.
The rest of the evening was 'fine' BG wise, but the comments continued.
"Shouldn't her pump help her from going low like that?"
"My kid is eating so much today, at least we don't have to worry about her going high!" This from a friend who's daughter has been having some hypo episodes, but honestly seems to not understand what's going on or how to manage it.
I honestly don't know if I want to sit them all down for a couple of hours and go over all the D stuff so they might understand it better (thus minimizing the comments) or if I'd rather them just not talk to me about D at all!
Maybe what I really want is a mute button for those times when people say stupid stuff. I don't want to hear it; it's not helpful information; it makes me cringe while the words are coming out of their mouths and for days (obviously!) after when I replay them in my head.
Or maybe I need to stop caring about the potential of hurting their feelings and just tell them how wrong they are or how it's not helpful at all to hear about so and so who went blind and lay it out for them in plain English and move on.
There's enough wrong and hurtful information out there and it's not really their fault they don't know better, but if I can set them straight, maybe I should!
As a parent of a Child with Type 1 Diabetes, I must "Learn from Yesterday, Live for Today, HOPE for Tomorrow." ~ Albert Einstein
I so understand what you are going through! My blood was starting to boil just reading your post. What is wrong with people that they say such stupid things?? I don't know what is the best way to handle their statements either. Some people you can educate and educate and they still don't get it. A mute button sounds good or even better a button that would cause the floor they are standing on to drop from underneath them. Yes, I just said that...I guess I have a lot of pent up anger about this topic too. Can't wait to hear what others have to say!
ReplyDeleteWhy will blogger not let me comment when logged into my google account on some blogs?? Nicole D. (www.vabeachduckfamily.blogspot.com)
Oh, how I hate the comments, especially from people I think "get it," because they've been our friends forever and they've seen all that we go through. I find myself pulling farther and farther away from non-D friends and getting closer and closer to D friends, because they always get it. It makes me sad to think that I'm growing apart from old, dear friends, but when they don't care to understand, it really gets under my skin. I like the mute button! I like Nicole's "trap door" button, too. :)
ReplyDeleteYep, me too. Sometimes, I try to explain...sometimes, I am just too tired to explain. I know they are just saying what they know or think they know to "break the ice", but it is hard to realize how "alone" I am sometimes. xo
ReplyDeleteI hate the comments too. My son is eleven (he uses OmniPod also) and is bothered by them also. We started a journal of stupid comments. When we're having a bad day, we go back over them and laugh. My favorite one was "Type 1? That's the good one- he'll outgrow it. It's type 3 you have to worry about."
ReplyDeleteI have a question I ask myself whenever people say stupid stuff about diabetes....what was their intent? Most of the time, they're trying to make that "same" connection that we find with others in the DOC. Unfortunately, they're no where near "same". If these people are your friends, I say, let it rip! Come right out and tell them honestly and truly that her problems with "highs" and "lows" will never end. It's a life-long struggle that she will have to continue to fight because of all the different variables that affect bg levels. And when you're done with the explanations, come back here so the DOC can give you a big hug and say "same"!
ReplyDeleteACK!!! The comments from well intentioned friends and family!!!!
ReplyDeleteYou could always say... "the reality of it being possible sucks just as much as having to hear about it".
Can I just say that google and this not letting me sign in for comments kinda sucks too!!!!
So frustrating! I really thought with the amount of comments I get, that I should download those cards that explain what is hurtful or upsetting for people to say. I love the idea of just handing an offender a card...and I don't even have to stop drinking my coffee to clear up the massive D confusion. :)
ReplyDeleteI hear ya Denise...like Reyna I too will sometimes try to explain, and other times I just don't have it in me to even bother trying. I've learned that most people don't really truly listen anyways unless it directly affects themselves...it's sad. Loving the mute button idea!! Big hugs to you and AWESOME job Bean for grabbing a juicebox when you needed one!! That is SO GREAT!!
ReplyDeleteI explain if I have the mental energy to do so. :) If you're not living with it, it's hard to really grasp all the little details that go into daily management of D. I think sometimes people say those stupid things because they're trying to understand or deal with it in their own way--even if it's probably better that they don't say anything at all! I try to be understanding, but what really irritates me is people IN the medical field who say dumb things. If you have the energy to set them straight, I say go for it! :)
ReplyDeleteI totally agree, with how irritating and bothersome it is when people interject there comments when they really don't understand. I used to boil when people would say non-d things like "Wait till they get older" about my young children, while I stand in line dealing with a stinking ass diaper, whining, temper throwing kidlet, who needs total assistance with all her care. I would reply, I'll trade ya and you can change the bum, and stay up half the night. People are just uninsightful and lack the ability to empathize.
ReplyDelete