Dr. Bill Polonsky, PhD, CDE, knows diabetes. Among other things, he has served as Chairman of the National Certification Board for Diabetes Educators, as a Senior Psychologist at the Joslin Diabetes Center in Boston, and as an Instructor in Psychiatry at Harvard Medical School. He is the founder and president of the Behavioral Diabetes Institute (BDI) in San Diego, California, and a member of Diabetes Health's Advisory Board.
A few years ago, Dr. Polonsky addressed the frustration experienced by people with diabetes when it comes to other people's reactions to their health. He developed a very popular Diabetes Etiquette Card that helps express those feelings. It's not necessarily meant to be handed to another person, however. Instead, it is more an acknowledgment that we have all felt this way at one time or another and that it's all okay. Dr. Polonsky says that it might be time for you to try talking to the family members who "only open their mouth to change feet" when it comes to your diabetes. They usually mean well, but they probably just don't understand how it is for you and how they can help you. You can let them know what's it's like for you gently and with empathy.
Here are Dr. Polonsky's 10 etiquette tips for people without diabetes, written from the perspective of someone with diabetes:
- 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 Besides, many of the popularly held beliefs about diabetes ("you should just stop eating sugar") are out of date or just plain wrong.
- 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.
- 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.
- 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!
- 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.
- 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.
- 7 - DON'T offer thoughtless 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.
- 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.
- 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.
- 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.
The Diabetes Etiquette Card is free. Here's three ways that you can get a copy of the card:
1. Download a PDF copy from the Diabetes Behavioral Institute's website.
2. Get a hard copy of the accordion-style card at no cost by contacting your local Accu-Chek representative. Roche Diabetes Care has licensed and printed the card and distributes them to healthcare professionals and to people with diabetes and their loved ones.
3. Order it directly from BDI. To cover costs, they charge $1.00 per card plus shipping, and they only sell and ship orders of 50 cards or more. You can call them at 858-336-8693 or email them at email@example.com
Read Rachel Garlinghouse's recent article, "Dear Medical Professional" on how frustrating it can be for a person with diabetes to deal with their doctor.
Please post your comment below (be civil, now!) on other things you wish other people would understand about you and your diabetes.
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Source: Behavioral Diabetes Institute