Diabetes myths: why what YOU don't know... can hurt US.

Right now people in positions of authority in school, work, and politics are setting harmful, discriminatory health policies based on outdated myths.

We want to Cure Diabetes Ignorance.

Unlike actually curing the diseases (type 1 and type 2), this a task that ordinary people can achieve by working together.

Like all others, people with diabetes come from all walks of life. We're doctors, lawyers, factory workers, artists, marketing execs, burger-flippers and scientists. The only thing that sets us apart is that we have diabetes.

It doesn't help when your kid's school says they must leave class to treat a low blood sugar, that they can no longer attend gym class, or when a restaurant tells you they'd prefer you didn't get your shot in front of other customers, when your boss tells you to "shut off that damn alarm" on your insulin pump, your sales manager won't allow a break in a business meeting to treat a low, or your department head infringes on your opportunities for promotion or continued employment because "you might get hurt."

And those are just the things that happened to me personally.

Discrimination is alive and well, and very much standing policy nationwide despite decades of progress.

Ignorance is no excuse.

People need to know that while diabetes can destroy health, Diabetes Ignorance Destroys Lives.

Correcting the myths and misconceptions

We didn't do it to ourselves. Type 1 diabetes is an incurable autoimmune disorder, and type 2 diabetes has multiple potential causes or precipitating factors, ONLY ONE of which is the result poor lifestyle choices. Others include a previous history of cancer and treatments, variations in gut biome, physical and psychological stress, heredity, ethnicity (some groups are at greater risk), and non-diet-related factors related to obesity. Yes, overeating can aggravate BOTH type 1 and type 2, putting stress on the pancreas and creating other problems. But there are people out there who are overweight and NOT diabetic. Similarly, there are folks with diabetes who are not overweight.

We don't lack self-control. You would be surprised just how much effort goes into counting every single gram of carbohydrate that goes into your mouth, carefully trying to dose just enough insulin to cover the food you ate, and adjusting food and insulin on the fly when the family dog decides to walk half a mile further than you had planned. In fact, just getting through the day is a balancing act, with the specter of death or hospitalization on the tightrope behind you, bouncing gleefully.

We're not all unmotivated. Like you, we want to live healthy lives, unfettered by stress and disease. In fact, unlike you, we work harder at achieving blood glucose control than you do, because YOUR pancreas still manufactures enough insulin for you to store the sugar you don't use. It's not your juice cleanse or weekday-night yoga routine that makes you better -- it's that all your organs still function.

We're not all sedentary. Just talk to Scott, a Clydesdale (heavy-set athlete) ultra-endurance triathlete with type 2 diabetes who swims 3 miles twice a week at the local lake, only to have his doctor tell him he "needs to start an exercise program."

We're not all fat. Talk to the elite marathoners and cyclists like Dave, who complete in top endurance events across the U.S., are at normal body weight, and nevertheless have sub-functioning pancreases and must take medications like Metformin.

Yes, we can eat sugar. In fact, if we've had even slightly too much insulin (an easy mistake when dosing for a restaurant meal), refusing us sugar or lecturing us on what's healthy to eat can delay a lifesaving intervention, leave us in the hospital, cause brain damage, or kill us.

We live in fear, not insouciance. Fear that a little too much insulin will kill us. Fear that a low blood sugar in the middle of the night will cause us to "sweat out" a critical amount of potassium, cause heart arrhythmias, and kill us. We even have a tradition for when that happens -- lighting a blue candle in memory of a lost brother or sister diabetic. Fear of losing health coverage that other carefree and apparently genetically perfect Americans take for granted. Fear that we will have to choose between making the rent or paying several hundred dollars to replace a month's supply of insulin that was in that tiny glass bottle we just dropped on the floor -- because even when we do have insurance they won't pay for another bottle. To say nothing of the fact that without that bottle of insulin, we will most certainly die.

And yet, despite all this, we persist. We keep our hopes up. And we continue to endure the judgment of others.

Fat, lazy, and unmotivated? Here's what's REALLY true about diabetics.

Tens of thousands of us nationwide work out regularly, as runners, swimmers, weightlifters, skateboarders, paddleboarders, cyclists, triathletes, and strongman competitors.

Over 9000 type 1 diabetics trade workout tips in JUST ONE FB group, Type 1 Diabetic Athletes.

Over 300 type 1 and type 2 diabetics have completed a full 140.6 Ironman triathlon, which involves a 2.4 mile swim, followed by 112 miles of cycling, followed by a marathon, all in less than 17 hours.

Over 200 type 1 and type 2 diabetic athletes consider themselves Ultra Endurance athletes, meaning that they have done one or more Ironman competitions, regularly run distances from 50K to 500K (31 miles to 310 miles) -- yes, that's NOT a typo.

Diabetic athletes have completed, competed, and podiumed in ultra endurance events, including:

  • the 2745-mile Tour Divide mountain bike race (Brian Lucido, first place)
  • the 380-mile 6633 Arctic Ultra foot race across the Arctic Circle (Roddy Riddle, 3rd place)
  • the 156-mile Marathon des Sables ultra run across the Sahara Desert (Roddy Riddle, Kronal Olivier, Emily Rolfe, Alex Williams, Rob Brown, Peter van Rompaey, Ranulph Fiennes, Antonio Lledo, and more.
  • a solo run across Canada (Sebastian Sasseville)
  • a solo run across the continental U.S. (Doug Masiuk)
  • first solo run of Relay Iowa (Don Muchow, who is also only the 3rd person to finish the 223-mile Capital to Coast Relay as a solo runner)
  • relay swim around Key West (4.5 miles each): Debora Kanter, Renee Moreno, Eric Spineto
  • solo swims around Key West (12.5 mi ocean swim): Karen Lewin

A lot of people in America are fat. A lot of people are lazy. A lot of people are diabetic. The problem is, they're not all the same people.

Why we created the Diabetes & Exercise Alliance and T1Determined.org

In 2003, DFW chapter founder Missy Snider had a dream that a group of self-supporting, physically active type 1 diabetics could train together, trade workout tips, and share information about managing diabetes and exercise that they had been forced to learn "the hard way" after multiple disappointments trying to get help from endocrinologists, diabetes nurse educators, nutritionists, coaches, and certified diabetes educators. Many didn't seem to get one or more of the aspects of being a diabetic athlete.

Later that same year, half a dozen others joined her and created DFW Diabetes and Exercise.

Now, in cities like Dallas-Ft. Worth, Denver, Austin, San Antonio, Houston, Odessa, and Little Rock, hundreds of type 1s and type 2s trade tips and train "buddy-style" while running, road cycling, swimming, paddleboarding, mountain biking, and more. Unlike the typical bike club or running club, we employ a "no drop" rule, meaning that if someone isn't feeling right or has to stop and test their sugar, EVERYONE stops.

We GET each other. And unlike other organizations, our focus is solely on mutual support.

If you want your local group to be a "chapter" of our group, "poof", you're a chapter. That's it. No fees. If you need help with logos or organizing, let us know.

Most recently, the Diabetes and Exercise Alliance joined forces with Type 1 Run and Beyond Type 1, organization with similar goals. T1R and BT1 host over 88 local chapters of Type 1 Run and showcase over 1000 stories of diabetes victory at BT1.

We're all in this together, so we're sharing the load, getting others to join, creating local events, and getting out the message to others that we can help each other.

But that's not enough.

There's still a desperate need to raise the image of physically active diabetics to a level of national prominence. As long as people in power think we're the cause of our own health issues, they'll continue to deny and discriminate and treat us like second class citizens.

That's where T1Determined.org comes in. It's about raising the profile of diabetic athletes, and educating and advocating for change.

We're out to set attention-grabbing examples in as many places as we can, and start the dialogues necessary to undo harmful discriminatory policies and practices wherever we can.

Bring us your #diabadass stories, your triumphs over prejudice, and help light the way to a World Without Diabetes Ignorance.

Email us at hey@wecanwedo.com or donsolo@t1determined.org.