The Dos and Don’ts of Supporting Someone with Diabetes

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This story was originally posted on April 13, 2015.
Dos and Donts

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.

John Zrebiec,

John Zrebiec, L.I.C.S.W., Chief of the Behavioral Health Unit at Joslin Diabetes Center

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

12 Responses to The Dos and Don’ts of Supporting Someone with Diabetes

  1. I enjoyed this article! I would love to be on your Do and Don’t email list. I have been a type 1 for 47 years. (I am 56). The most insensitive thing EVER said to me was:” I can’t believe you are still alive”. Imagine that!

    • Thank you for your comment! That’s quite the insensitive comment! When you hit 50 years, be sure to apply for the Joslin 50 year medal!
      Also, please subscribe to the Speaking of Diabetes Newsletter to keep up to date with all the stories coming out of Joslin. You can subscribe from the homepage of the blog, blog.joslin.org.

  2. Michael Lowenstern says:

    John, thank you for brightening (and lightening) my day. 🙂

  3. Denise Beaulieu says:

    I enjoyed this article. Having “celebrated” 25 years as a type 1 diabetic this past February, I have heard it all from those who consider themselves the “diabetes police.” (And I included my snarky thoughts and sometimes the thoughts left my lips in parenthesis as I have to keep a sense of humor to deal with the condition – these usually stop folks in mid lecture):

    “Should you be eating that?” (“I don’t know; should YOU be eating that?”)
    “What about your sugar?” (“What about it?” What about yours?”)
    “You eat too much salad, put some back.” (Wait, what?! My former monster-in-law actually said that to me.)
    “You can’t eat cake.” (“Yes I can have my cake and eat it too… test, bolus the total carbs and I am good to go. I just don’t sit and eat the whole **** thing in one sitting and it is only on rare occasion, like my birthday.”)
    “Did you take extra insulin?” (Just what the doctor prescribed.)
    “Get up! What is wrong with you?” (Drunken ex-spouse’s complaint during a morning with low blood sugar….)

    The worst of the worst was a former endocrinologist of mine who belittled me in front of his medical students when my numbers would not stabilize amd he had the chutzpah to say in my presence to his students that “This one is a nut job.” I got rid of him like garbage and found a better provider who was on time, did not have a “bad-itude” and took the time to figure out I also had depression and anxiety, which was fixed with medication and therapy and a major life change (divorce and a move to a sunnier climate) and things are coming together.

    Many thanks,

    Denise

  4. Cedric Marillier says:

    I am type 1. Diabetic and I struggle with my energy levels . Mostly I sleep at least 12 hours + . And feel pain in the muscles making me very tired and not able to do much .

  5. Bambang Harymurti says:

    Thank you for your excellent article. I was diagnosed with prediabetes 2 a year ago and has changed my life style into a much healthier mode. Learns a lot from Joslin Center. Keep up the good work. I highly appreciate what you all do in Joslin Center. Bambang

    Ps.
    I am going to be 59 next week and my mom was a diabetic

  6. Lisa says:

    I have had type 1 diabetes for 52 years. I manage this disease very carefully! Over the years I have been cautious about who I share this information. On many an occasion, (even Primary Care Physicians can be very insensitive and full of doom and gloom) the first reaction is a sad tale about someone they know who “Died a terrible death” from being diabetic. I usually respond with, Well, I’m going to live to be 111 so I’m not worried about it! Then walk away from the negative conversation and energy!

  7. Grace M Pasquariello says:

    I have a friend who said to me that insulin is poison to my system….I told him it is keeping me alive….He always asks me to go in a different room to take my blood test and my insulin….He just does not understand……

  8. Grace M Pasquariello says:

    I have had diabeties for over25 years …

  9. Sandy says:

    I have Type 2 diabetes, and depression and anxiety, I have had ignorant comments to and they hurt, I feel I don’t get the emotional support I need to ease the fear of diabetes. I have had diabetes for almost 5 years and I am shocked at Mental Health professionals and how they miminize diabetes, and the effects it has on you emotionally, most have no understanding of it and don’t take the time of day to learn.

  10. Audrey says:

    I was diagnosed with Type 1 two years ago at 28 and have been stunned by some of the insensitivity that I’ve been on the receiving end of. While still in the ICU with severe DKA, I was being told by a friend via text to stop eating candy bars all the time. I’ve been scolded in a fairly public way for having a glass of wine, I’ve been told repeatedly that Diet Coke is to blame for my woes, and I’ve been told more stories about grandmas losing foots than you can imagine.

    Then again, I do talk about my diagnosis quite a bit, maybe too much, and can admit that I’ve invited some of the negative comments I’ve received simply by volunteering my story a little too willingly. Most people are respectful and some are even curious. When I meet someone who wants to know more and who doesn’t presume to know how this whole living with T1D thing works, I know I’ve met a very cool person.

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