Diabetic etiquette, or what NOT to say to the parent of a T1 child

Diabetes is one of those diseases that people think they know a lot about. You hear a lot about D on the news these days, and it’s popping up in a lot of magazine articles. Unfortunately, what most people know about diabetes pertains to Type 2, not Type 1, and as the parent of a T1 kid you get subjected to a lot of rather uninformed opinions and commentary from complete strangers, as well as a number of well-meaning friends and family.

Depending on my mood (and how well I know the person who’s spouting off incorrect information), I will either just nod my head and smile, or stop and try and educate them a little further. The latter option inevitably takes more time, and I’m never sure if it does any good, but I tend to walk away feeling better if I try to help further someone’s understanding, rather than get all hot under the collar after the fact. Make no mistake, though, there are times that I am left steaming after one of these encounters (like the time one of the pediatricians from our practice tried to tell me that we shouldn’t treat Richard O’s diabetes with insulin – we should look into treating him with Gila monster venom and a whole foods diet – no joke!)

And let me be completely honest – before Richard O’s diagnosis, I think that I probably would have made a few of these comments myself. However, to spare you, dear readers, from making the same mistake, I share this list.

What not to say to the parents of a T1 child:

  1. “Here – I brought him some sugar-free candy/snacks/etc. I know that he can’t have regular stuff.” This is, by far, the most common misconception that I run into. However, I must acknowledge that for many, many years, the conventional wisdom was that sugar was “bad” for diabetics and should be avoided at all costs. Recent advances in nutritional science and diabetes research have revealed that with today’s insulins, people with Type 1 can, in fact, eat normal sugars and starches just like anyone else – so long as they appropriately cover their carbohydrate intake with insulin. So, the occasional Little Debbie cupcake or lollipop won’t kill a T1 kid’s meal plan, but like any growing child, a T1 kid needs a healthy diet rich in whole grains, fruits, vegetables, and lean sources of protein – and low on junky processed foods.

Another thing that most people don’t realize is that most “sugar-free” foods actually contain a whole lot of carbohydrate – and it’s the carbohydrate part that matters, not the sugar. While it’s true that you can subtract some kinds of sugar substitutes (like sugar alcohols, which don’t get fully metabolized by the body) from the carb total when counting carbs for diabetics, these sugar substitutes often produce some nasty gastrointestinal side effects, like flatulence. Personally, the only sugar-free product we use for Richard O. on a regular basis is sugar-free pancake syrup, and then we use it only in small amounts.

The other part of this issue is that a T1 child already feels separate from the rest of the crowd – he has to monitor his blood glucose, take insulin through injections or using a pump, and sees the doctor or the school nurse a lot more frequently than most kids. You don’t need to isolate these kids further by making a big deal out of bringing them special “sugar-free” treats when all the other kids get to eat normal stuff. Plus, most of the sugar-free stuff tastes kind of lousy. If you really want to do a T1 kid a favor when you bring treats to share with a class, rather than buying sugar-free items, make sure you have the nutritional info on hand so the parent or caregiver can get an accurate carb count.

  1. “He’ll grow out of this, right?” This is another comment that I hear pretty frequently, and also one of the most frustrating. The term “juvenile diabetes” is really a misnomer, since it makes it sound as though it’s a disease pertaining only to childhood – indeed, something you could grow out of, right? True, Type 1 is most often diagnosed when the patient is still young, but it is a chronic, lifelong disease that will never go away. I think this particular misconception is so hurtful because as a parent, you wish desperately that your child could age out of it, but he never will. And every time someone brings it up, that wound reopens.

  2. “How can he have diabetes? He’s not overweight!” Chalk this comment up to a fundamental misunderstanding of the difference between Type 1 and Type 2 diabetes. For all the talk we hear on the radio and television about diabetes, most reporters never make the distinction that Type 1 is an autoimmune disease, while Type 2 is more of an avoidable “lifestyle” disease. The symptoms of the two diseases are virtually identical, but the causes are completely different.

The link between obesity and diabetes mostly pertains to Type 2 diabetics, who become insulin resistant due to the increased fatty tissue on their body. However, it is possible for Type 1 diabetics to become insulin resistant if they become overweight, so they in effect have both Type 1 and Type 2 at the same time. I don’t envy those folks one bit – that has got to be super-rough.

  1. “You have his blood sugars under control now, right?” When I hear this one after a long day battling highs and/or lows, it just makes me want to scream with frustration. “Blood sugar control” is a battle that must be fought anew every day. If you’ve read some of my other posts about life with diabetes, you know that it is possible to do everything “right” and still wind up with highs and lows. It is a constant balancing act between a dizzying array of variables – like walking a tightrope in stiletto heels while carrying a live walrus, balancing a feather on your nose, and singing the entire score of Mozart’s Magic Flute – backwards. Some days you manage to nail it, but more often than not you drop the walrus, or sing a wrong note, or break a stiletto heel – but you get up again and do it the next day anyway – because you have to try, for your son or your daughter.

  2. “Life must be so much easier on the pump – it can monitor everything for you and give him all his insulin.” The insulin pump is not an artificial pancreas. It’s merely an alternative insulin delivery tool that allows for much greater precision in insulin dosage. CGM, or Continuous Glucose Monitoring, does exist as a viable technology, and I believe that the future of diabetes treatment lies in its further development. However, as it stands right now, CGM really is only useful for determining glucose trend data – it monitors glucose in interstitial fluid, not the bloodstream, so it isn’t as accurate as finger-stick testing. That may change one day. Most of the major pump companies are now partnering with CGM manufacturers to develop ways for insulin pumps and CGM systems to “talk” to one another, so the information from the CGM can be used in real time to make dosing even more accurate. However, this will take time. Until then, we are thrilled to be using the pump.

  3. “So, how did the pump implant go?” Whooooooa, Nelly! There are no implants involved with insulin pump therapy – I am not assimilating my child into the Borg, or anything. The insulin pump is an external device, connected to the body by tubing, and with a small flexible Teflon catheter that gets introduced underneath the skin via a needle. After insertion, the needle gets removed and the catheter (called a cannula) gets left behind. Every few days, we have to take that little tube out and put a new one in somewhere else so the skin doesn’t begin to heal around it, leaving scar tissue (think of what happens when you pierce someone’s ear – it’s the same concept, except we want to avoid that in insulin pump therapy). No surgery is required.

And that, my friends, is your crash course in diabetes etiquette. So, if you happen to hear someone saying one of the above phrases, take a minute and educate them, if you will. Parents like me will be forever grateful.

Now, all we need to do is boil this all down to a 3x5 recipe-sized card for all those with short-attention spans can finally “get it”!

I think you got your point across, people like that make me upset sometimes. They think they know but they really have no idea. People need more education. Good job!!

All very true, Katie. The T1 child will hear those words too, and willl probably grow up into a world where the words are too. We do the best can.

Very nice!