Living with diabetes can be hard. Really hard. The constant blood monitoring, thinking about every morsel of food you put in your mouth, trying to avoid scary, life threatening complications. The stress can be exhausting.
Then, just as you’re having an amazing day—your blood sugars have been nice and steady, you did an awesome job at work, you ate a super heathy lunch—you have to explain yourself. Someone sees your pump. You excuse yourself to bolus and someone spots a needle. You refuse the sugar-laden donuts in the break room. And you have to say it. “I have diabetes.”
Cue the insensitive responses:
“Do you have type 2 or the bad kind?”
“It’ll go away if you just lose the weight.”
“So does that mean you can’t eat cake?”
“Diabetes isn’t that hard, you just have to be on a special diet, right?”
“Your diabetes must be getting worse because you take insulin.”
“You brought this on yourself.”
“Since you take insulin, does that mean you’re type 1?”
“You’re not fat, you can’t have diabetes.”
And the best of all… “But you don’t look sick.”
You wince. Perhaps you’ve heard it before, or maybe this is a new, creative dig at your illness. In a perfect world everyone would be educated about diabetes, but right now that just isn’t the case. Too many stereotypes and myths exist today that perpetuate misconceptions about both type 1 and type 2 diabetes.
John Zrebiec, L.I.C.S.W., Chief of the Behavioral Health Unit at Joslin Diabetes Center, is no stranger to oblivious or downright rude comments aimed at those with diabetes. He suggests that if someone says something insensitive or just plain wrong to you, take the high road. Educate them on what it’s really like to live with a disease day in and day out, the differences between type 1 and type 2 diabetes, or the fact that losing weight won’t cure you. Be honest and be brave.
The best thing you can do is tell your own story. Whether it’s a lot of information or just a little, you shouldn’t be afraid of educating others. If you’re having trouble putting your own experience into words, look to others for inspiration. This essay, called “The Spoon Theory,” was written about living with lupus, but it’s a great way to explain the constant monitoring and daily exertion that accompanies any chronic illness.
“The ‘Spoon Theory’ also captures the constant and unending choices that someone with diabetes has to make every day,” says Zrebiec. “I suspect that it’s not only the injections, dosages, blood sugar checks, carb counting, etc. that wears people down, rather it’s the relentless decision making and thinking that diabetes requires.”
Want more suggestions? Here’s a helpful Do’s and Don’ts list you can forward to a friend, an acquaintance or loved one who is in your life (but doesn’t have diabetes):
When I tell you I have diabetes:
DON’T offer thoughtless reassurances. When you first learn about my diabetes you may want to say things like “Hey, it could be worse!” but this won’t make me feel better. Your message says that diabetes is no big deal. However, diabetes IS a big deal.
DON’T offer unsolicited advice about my eating or other personal habits. You may mean well, but giving advice, especially when not requested, is not very nice. Besides, many of the popularly held beliefs about diabetes are out of date or just plain wrong.
DON’T look shocked when I check my blood sugars or give myself an injection. I don’t exactly look forward to it and it’s just something I have to do. Checking sugars and taking medications keep me healthy. If I have to hide while doing so, it makes it that much harder.
DON’T tell me horror stories about things you’ve seen in movies. I’m not going to die if I get pregnant or if I eat a candy bar.
DON’T peek at or comment on my blood sugars without asking me first! These are private numbers. It’s normal to have readings that are sometimes too low or high. Your unsolicited comments about them can add to the disappointment, frustration, and anger I am already feeling.
DO be supportive of my self-care choices. Please honor my decision to decline a food choice, even when you really want me to try it. Trust me; I would love to have some of your brownies. But you are most helpful when not being a source of temptation.
DO take the time to learn about diabetes. That way, you can educate others and stop perpetuating the myths that make it harder to be open about my diabetes.
DO ask how to be helpful. If you want to be supportive there are lots of little things I would probably appreciate your help with. However, what I really need may be very different from what you think I need, so please ask first.
DO realize and appreciate that diabetes is hard work. Diabetes management is 24/7. I would love a break but I have to deal with my diabetes all the time, every day. It’s not always a walk in the park.
DO offer to join me in eating well and exercising. Not being alone is incredibly helpful and really motivates me to make healthy choices.
And most importantly, DO offer love and encouragement. As I work hard to manage my diabetes, sometimes just knowing you care can make the day a little bit brighter.
“The behavioral research is very clear on one point—the more support that you get from the people around you, the easier it is to manage diabetes,” says Zrebiec.
Have you ever dealt with someone saying insensitive comments or had to explain your diabetes to someone? How did you approach it? What would you add to our Do’s and Don’ts list? Tell us in the comments!
Do you have diabetes and need emotional help and support? For more information visit the Joslin Mental Health and Counseling Services.