Thursday, January 1, 2009

Diabetes Etiquette - Starring Number 7!

Number 1: DON'T offer unsolicited advice about my eating or other
aspects of diabetes.You may mean well, but giving advice about
someone’s personal habits, especially when it is not requested, isn’t very nice. Besides, many of the popularly held beliefs about diabetes (“you should just stop eating sugar”) are out of date or just plain wrong.

Number 2: DO realize and appreciate that diabetes is hard work. Diabetes management is a full-time job that I didn’t apply for, didn’t want and can’t quit. It involves thinking about what, when, and how much I eat, while also factoring in exercise,medication, stress, blood sugar monitoring, and so much more – each and every day.

Number 3: DON’T tell me horror stories about your grandmother or
other people with diabetes you have heard about. Diabetes is scary enough and stories like these are not reassuring! Besides, we now know that with good management, odds are good you can live a long, healthy, and happy life with diabetes.

Number 4: DO offer to join me in making healthy lifestyle changes.
Not having to be alone with efforts to change, like starting an exercise program, is one of the most powerful ways that you can
be helpful. After all, healthy lifestyle changes can benefit everyone!

Number 5: DON’T look so horrified when I check my blood sugars or give myself an injection. It is not a lot of fun for me either. Checking blood sugars and taking medications are things I must do to manage diabetes well. If I have to hide while I do so, it makes it much harder for me

Number 6: DO ask how you might be helpful. If you want to be supportive, there may be lots of little things I would probably
appreciate your help with. However, what I really need may be very different than what you think I need, so please ask first.

Number 7: DON’T offer thoughtless 10 reassurances. When you first learn about my diabetes, you may want to reassure me by saying things like, “Hey it could be worse; you could have cancer!” This won’t make me feel better. And the implicit message seems to be that diabetes is no big deal. However, diabetes (like cancer) IS a big deal.

Number 8: DO be supportive of my efforts for self-care. Help me set up an environment for success by supporting healthy food choices. Please honor my decision to decline a particular food, even when you really want me to try it. You are most helpful when you are not being a source of unnecessary temptation.

Number 9: DON’T peek at or comment on my blood glucose numbers without asking me first. These numbers are private unless I choose
to share them. It is normal to have numbers that are sometimes too low or too high. Your unsolicited comments about these numbers can add to the disappointment, frustration and anger I already feel.

Number 10: DO offer your love and encouragement. As I work hard to manage diabetes successfully, sometimes just knowing that you care can be very helpful and motivating.

We are going on 6 years of living with this disease day in, day out, 24/7-365 or however you wish to say it. One of the most common misconceptions about type 1 is that it is not a big deal, or that it is not life threatening. It is both of those things. That is not to say that kids and adults with type 1 cannot live a full and relatively normal life - they can and do - and most of them do it better than people without a chronic illness. However, that does not take away from the enormous and terrifying things diabetics (especially children) have to face.

I always go back to seeing my daughter wandering around the hallways at school, because someone thought diabetes wasn't a big deal and allowed her to leave the classroom unassisted. She was nearly unconscious, confused and 'out of it'. She had to leave the school in an ambulance that day and go directly to the hospital - she was in the low 40's and that was after 15 carbs. Nikki still has nightmares and fears about going to sleep and never waking up.

Nikki won't let this terrible disease defeat her, but it is important to acknowledge the seriousness of the disease (and the bravery of those who have it)and not fall into the very wrong habit of saying 'it could be worse'. I guess whether or not it could be worse depends on whether or not you are actually facing a life sentence of diabetes.


Jill said...

You ARE one very strong mother and I am so glad we met on here! You were my rock when I had no one else that understood the pain I was feeling of a new diagnosis! You've been there thru the "highs" and the "lows" and I could never begin to thank you enough!

Those etiquette rules should be plastered everywhere! It's hard because so many people are ignorant to the severity of this disease and they think "Well Grandma took a pill for it so it cant be THAT bad!" When in fact they are ignorant that there are 2 different types of diabetes. "Dietary changes" dont change the fact that our kids still have to do shots, 8+ finger pokes a day and have to constantly be watched over to manage this disease. My job as Kacey's Mommy is to inform as many people as I can about the difference ;) and the fact that we CAN and we WILL rule over this D-monster!

I'll probably steal these 10 tips for a later post ;) the more people that read them then the better our chances are of eduacating!

Keep up the greak work you're doing with Nikki :) She's doing so well and she's had a great role model!

We love ya!

The Turner's said...

Jill, thanks so much for your words - I cherish them. And YES post away! I agree, the more we can educate about the true nature of actually living with this disease the better for everyone!! Love to you and the girls.