Reading this brought me back to my earlier years and reminded me that a bit of my, now nearly ingrained cynicism, came from repeated events very similar to those you describe.You are right, people do mean well and they tend to hope for the best (of course there is the other group who have to share every amputation, kidney and eyesight failure they may consider to be D related) but this kind of sharing is annoying enough to adults and you are right, it would be great if folks could keep themselves from doing so much of this kind of sharing with children.
Your daughter is very lucky to have a mom who is so well centered and so aware.If one could ask for a single mitigating factor to undo the damage, a great mom is probably the best solution!
I wish people would not feel sorry for me! Yes - I have diabetes, but I am an extreamly healthy and active person. When someone says "oh... I'm so sorry" it drives me nuts! I run races, I lift, I eat healthy (by choice) but I can have a big slice of cake if I want to (and I did on my birthday last week - thank you Cold Stone)! Yes, I'm hooked up to a pump 23 hours a day, but it really is not all that bad. Diabetes has made me aware of my body and all it can do!! I love it!
People always assume I am a kill-joy at parties, hang outs or anything else fun because they believe I cant have sugar. Whenever I tell someone I am diabetic (not just friends) their response is ALWAYS "oh! so you can't have sugar". This always bothers me because they don't understand that I CAN have sugar and carbohydrates in MODERATION with a dose of insulin. They jump to the conclusion that because I am diabetic I have to stay completely away from carbs and sugar.
And if not that then I would have to go back to times when I was younger when classmates and friends thought my diabetes was contagious. The worst feeling ever is having a friend come up to you in 2nd grade and say "I can't be your friend anymore. I don't want to catch your diabetes, Sorry." Now, I hang with older kids who understand the concept a little better but I can still imagine that this happens to little kids with diabetes in other places.
For the most part I've taught my friends about my diabetes, like when I could be low and helped them understand I'm not any different from them. They are all supportive and they've learned what they know from myself or their family. What I want people to know is that people with diabetes are not sub-human, anyone can get this and it is nothing that I did personally to get this. My pet peeve is "can you eat that? It has sugar!" I wish more people would learn that it is not about sugar, it is about carb counting. So I try to teach everyone I know that the carbohydrates are important not sugar.
I asked my 8 year old daughter and she had a completely different response: "I wish they would understand that I don't want to be asked questions all the time, its tiring!" The problem is mostly with kids that don't know her - on the bus, play ground, at lunch, in carpool line, etc.. She doesn't want to stop whatever it is she's doing (playing, eating, talking with her friends) to respond to "Why do you get to have an ipod at school?" (that's what they think her pump is). When she first got her pump (age 6), her first inclination was to hide it and we insisted she did not hide it because we didn't want her to get in the habit of hiding her diabetes and/or being ashamed of it. So now she's in the habit of wearing it on her belt and it doesn't even occur to her to try to hide it. So my question for all of you: is it time to teach her it's ok to put it in her pocket? Do older kids "hide" their pumps? Or did any of you develop a method for dealing with questions that turned it into something that would be positive for an 8 year old? I've tried saying it gives you an opportunity to make more friends and also an opportunity to teach others about diabetes - but she's just more interested in continuing to do whatever she's doing at the moment with the friends she already has! Any ideas would be appreciated.
I'm really sad to say that I cannot offer any actual advice regarding your question as I am 39 now (and still will be for a couple more weeks!) and I have had diabetes since I was four years old. I grew up being the kid that you are trying to avoid your daughter becoming; my diabetes was a hidden part of my life, not shameful necessarily but hidden.
I would say that it's only been in about the last ten years that I have become more open about my D and especially so in just that last two to three years. As an adult, it makes it easier on me, less stressful, to be open about it. However, I completely empathize with your daughter. It must be terribly annoying for her when she has to put a pause on being a kid and become the adult, even for just a few minutes.
As I said, I don't have any advice for you (Sorry!) but I do hope others will and what I can offer is my whole-hearted support!
One thing that really bugs me is when you talk to people about the troubles your having and instead of being understanding they judge you and ask: "If you've had it for that long why aren't you doing better?" They don't understand how it is to live with a disease like this. If they don't know how you were raised they shouldn't judge. It's harder for some people to get right. But the one thing that really bothers me is the doctors. Just because they've studied it doesn't mean they understand what it's like to live with it.
I would let them know that this type of Diabetes DOES NOT just go away and that NO he won't grow out of it..that the only way to overcome this is through a CURE! Ok, I'm off my soapbox, LOL!
I have been diabetic for 25 years. I just wish people would realize I don't need them to mother me and monitor my food intake. Do they not realize I do it just fine when they aren't there?????
AMEN!!!!! And don't you let them tell you they do. There are always other doctors out there if you need to switch. I wish I would have figured that out 20 years ago!
Don't even get me started on doctors!!! I have been through so many in the last 35 years! My most insulting experience was with the one who told me: "You,re a successful, university-educated person... you should know better!" (I don't remember exactly which problem he was referring to). Yes, I did know better in my mind, but the mind doesn't always control all the actions of the body, right?!?
I'm happy to say that as of about five years ago, I am a patient of an endo that I like a lot. She is smart and, most of all, supportive.
I have wonderful friends and family who take the time to understand.
I think I would want them to experience what it feels like if you are low or high. it is hard to explain being too tired to get up or so shaky that you just need to eat.
I wish my non diabetic friends and family could understand how hard this illness is phsychologically. If they could understand that, they would have a better understanding of why I " Just can't take care of myself. "
If my friends could understand that they make it so much harder to be different when they either OVERLY worry and bother me about me disease or when they act too blindly as to the fact that I can't be healthy like thier bodies. It really stinks like skunk trunks!