November 14 was World Diabetes Day, and organizations around the world brought attention to the disease in various ways. JDRF in the U.S. highlighted a campaign, #T1DYouDontSee, encouraging people to tell their stories of living with type 1 diabetes. T1International used it to highlight their #insulin4all campaign. The JDCA (Juvenile Diabetes Cure Alliance) used the day to encourage people to sign their “More for a T1D Cure” petition. And JDRF UK used their platform that day to …. celebrate by eating a lot of sugar???
At least, that’s what it looked like on their Facebook page, where a group of people at the JDRF UK office were pictured with “jazz hands” extended towards about 4,000 carbs worth of blue-frosted cakes, cookies, and cupcakes and the words: “After seeing JDRF’s amazing supporters #GoBlue for #WorldDiabetesDay, we did the same!”
The reaction on Facebook was swift. Here’s a small sampling:
“How many carbs are in this picture?!? Wow guys…pretty tone deaf.”
“You may as well have the Cookie Monster as a spokesperson.”
“You guys all realize that people with diabetes essentially have CARBOHYDRATE INTOLERANCE DISEASE….enough said!!!”
‘This is the craziest thing I’ve seen all day. Are you guys joking? Or is this all made with swerve and almond flour? Just so confused by this….”
“How out of touch with T1 people can you be? We work so hard every day to keep our blood glucose levels in check. While eating sugary things didn’t cause our T1, our bodies simply cannot handle eating sugar. Instead of celebrating the discovery of insulin, which keeps us alive, you decide to celebrate what’s making tightly controlling this condition impossible to achieve. What message are you sending to people? It’s sad.”
“I’m so saddened about this post – are any of you T1? Would you care to show your cgm graph after eating these cakes? Seriously – we don’t make insulin – carbs put our sugars through the roof. Then we crash from all the insulin. Try living like this – it’s hard – I mean really really hard – and don’t think carb counting actually works when you’re eating high sugar foods. People are so influenced by you – it’s your duty to do better ”
This isn’t the only time I’ve seen diabetes organizations who are tone deaf about the messages they’re sending around food. A JDRF walkathon we participated in a few years ago was sponsored by Coca Cola, complete with a booth where people could pick up free Coke products. (Coke has not been a sponsor the past few years.) We’ve been to an event where the appetizers were mashed potatoes in a martini glass; another where the kids were served burgers (with buns) and French fries, along with ice cream sundaes; and a day long event where lunch involved rolls and enormous brownies, and dinner included mac and cheese followed by cake. And as one of the people responding to JDRF UK’s Facebook post remembered: “I went to a JDRF national event where they fed all the t1 kids this sort of food. I remember listening to the symphony of high blood sugar CGM alarms going off about 30 minutes after the high carb treats were served. Very sad.”
In this case, JDRF UK responded to the Facebook brouhaha, twice.
First they said:
“Hi everyone, thank you for your concerns and comments and we’re so sorry if we’ve upset anyone in any way. One of the things we hear that people find distressing is when they, or their children, are told that they can’t have a piece of cake at a special occasion because of their type 1 – that’s why we try to raise awareness that you can eat a normal, healthy diet with type 1, including some treats in moderation…..”
“….Firstly, I’m so sorry that the photo and our further response caused upset. We failed to hit the mark this time and for that, I apologise wholeheartedly….
Many of us live with type 1 ourselves, or have family or friends with the condition and we’re mortified to think that a light-hearted baking contest caused distress to our amazing supporters.”
Is the point of World Diabetes Day really to raise awareness that you can eat a normal diet and have treats once in a while? (Though the picture on the Facebook page doesn’t illustrate the concept of eating treats in moderation.) To me, World Diabetes Day should be about publicly acknowledging the challenges faced and the strength required by those who live with T1D. Living with type 1 diabetes is really, really hard: it can be an every day, every hour, and every minute grind. And living in a culture (or really a world) that is obsessed with and celebrates sugar makes it harder. We don’t need diabetes organizations to be highlighting the same message that much of the rest of society highlights: that celebrations=sugar. We need them to be fighting for a cure, and fighting for us and our loved ones to stay healthy while we wait.