DiabetesHealth.com recently published "What People with Type 1 Diabetes can Learn from Type 2s." Clay Wirestone, the author, set off a firestorm of comments, mostly from people with type 1 diabetes. Comments were in the vein of, "How dare you tell me I can learn something from those lazy, fat type 2s!"
Here's a sampling of comments:
"I'm type 1, and... it aggravates me when people with type 2... whine. You know why? Because... I'm stuck on insulin for the rest of my life... I don't want to hear complaining from people who have it easier than me. I have the world's smallest violin playing for them. :)"
"I have been a type 1 for 43 years. I have told my doctor... that I wish type 1 was called diabetes and type 2 was given a totally different name. They are NOT the same disease! Try and explain that to non-diabetics. Listen very carefully. I cannot take a day off. If I eat everything my dietitian suggests, I must still check my blood glucose four to seven times per day and take numerous injections ... How many type 2's have been unconscious in the middle of the night due to low blood sugar?"
"As a long-standing T1 (37 years -- I was diagnosed in 1973 at the age of 17 months) AND as a Registered Nurse Certified Diabetes Educator, I am appalled... The author obviously has no idea what T1, or for that matter, T2 patients go through on a daily basis.The media needs to be scolded when they fail to define the differences between T1 & T2."
Shall we say Wirestone opened Pandora's box. With the recent explosion of media coverage for type 2 diabetes, people with type 1 diabetes feel invisible, overlooked and are often blamed by an unknowing public for causing their own condition--eating ourselves into our disease. This isn't the case for type 1, and frankly, it isn't always the case for type 2.
Type 1 and type 2 diabetes share some commonalities, but are very different conditions.
I'd like to create a ceasefire in this war by explaining why type 1s are so ready to go to war and what may put this to rest.
Here's a snapshot of the two conditions.
thirst, frequent urination,
weight loss, hunger,
waking in the middle of the night to pee, waking with a headache, fatigue, high blood pressure, urinary tract infection, neuropathy.
your cells kill off your
cells. Body no longer
make too much, but it
isn't used properly by
a few months
Same to varying
self-management of food, exercise, insulin and stress. Must take multiple
injections of insulin
or infusion through
infusion through insulin pump.
Same to varying
hypoglycemic unawareness, gastroparesis, ketoacidosis (more prevelant in type 1), earlier mortality.
hypoglycemic unawareness, gastroparesis, ketoacidosis (less prevalent in type 2) earlier mortality.
A portion of people today with type 2 diabetes are losing their diabetes symptoms and going off their medication by losing a small amount of body fat and/or maintaining a normal weight and getting regular activity. Many people with type 2 diabetes may have been able to prevent getting it with earlier weight loss and activity.
Right now almost 60 million people are lining up to get type 2 diabetes. They have what's called "pre-diabetes," and most will have type 2 diabetes five to 10 years from now--when most of them don't have to. The Diabetes Prevention Program conducted in 1992 showed that healthy eating, moderate weight loss, regular activity, education and support reduced the chances of pre-diabetics getting type 2 diabetes by 58 percent. In people over age 60, the risk reduction was 71!
More recognition of type 1 can lead to more funding
I, like many of my fellow type 1s, would like to see type 1 and type 2 diabetes have different names. It would help policy-makers channel more funding for research toward a cure. The cure I was promised 28 years ago, 10 years after I got my diabetes, will likely come from stem cell research. We have scientists ready and anxious to do the work, but not enough funds, labs, support and stem cells available.
More funding will also create more tools for increased quality of life to ease the daily painful pricks of blood draws and injections managing type 1 diabetes. I sure would like to see a non-invasive blood testing meter and oral insulin, as I've been reading about for years.
Recognition of type 1 as a significantly different disease than type 2 will help the general public understand that our diabetes can only be cured by more research while type 2 prevention and reversal requires a lifestyle change.
It's not a major chore to rename type 1 diabetes. It's been done before. In 1997 type 1 diabetes was called "juvenile diabetes," reflecting that mostly children got it. Type 2 was called "adult onset" diabetes, reflecting that mostly adults got it. But because increasing numbers of children were getting type 2 diabetes alongside with the obesity epidemic, the names were changed. Since then type 1 has been largely been eclipsed.
Even the third major form of diabetes, "gestational" diabetes--occurs in women during pregnancy--has it's own name. It is not referred to as type 3.
My other reason for wanting type 1 diabetes to have it's own name is deeply personal and emotional. I'm truly tired of how little people know about the intense, exhausting and daily effort of managing type 1 diabetes.
Here's an idea of what it's like to live with type 1 diabetes
I do tasks all day long in an effort to mechanically manage a function (normal blood sugar level) that a normal body manages automatically. If my blood sugar goes too low I can lose consciousness or die. If it is too high over too many years, it will leave me with diabetes complications.
- Pricking my fingertip seven times a day to squeeze out a drop of blood to check my blood sugar reading
- Taking six to eight insulin injections
- Making a calculation at every meal to decide how much insulin to dose for my meal: I do this by guessing how many carbohydrates are in whatever I'm going to eat while factoring in: 1) Whether those carbohydrates are simple and will raise my blood sugar quickly or complex and will raise my blood sugar slowly 2) Exercise I may get 3) Stress and 4) Being sick--all of which impacts blood sugar.
- Trying to consider impacts I can't calculate like variability in the absorption rate, and amount, of insulin from day to day, shot to shot
- Mornings or afternoons lost because a very low blood sugar depletes your energy for several hours
- Worrying before going to sleep that my blood sugar may go so low during the night that I won't wake up in the morning
- Seeing a slew of doctors on a regular basis: endocrinologist, diabetes educator, ophthalmologist, podiatrist
- Getting lab tests quarterly
- Carrying supplies like my meter, test strips, insulin, syringes and insulin pen wherever I go
With media coverage almost exclusively devoted to type 2 diabetes today, it is easy to understand why Wirestone set off a firestorm; type 1s feel that they live in the shadow of type 2 diabetes, unseen, maligned and misunderstood. The outpouring of vitriolic comments to Wirestone's blog were emotional--as though people's amygdala ran roughshod over all their logic.
Both type 1 and type 2 are equally "serious"
While part of the desire for a separate name reflects type 1s' feeling that their diabetes takes more intense effort to manage, it does not mean that one is more "serious" than the other. While people with type 1 and type 2 diabetes may start in different places, we may both end up in the same place--with debilitating diabetes complications.
When my book came out last year debunking diabetes myths, 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It, I was frequently asked what are the most significant and surprising myths? This one is the one I most enjoyed talking about--"Type 2 diabetes is not as serious as type 1."
This proclamation that type 1 and type 2 diabetes are equally serious may start yet another firestorm, but it's true and mostly because so many people with type 2 diabetes don't take it seriously. That lack of self-care is saddling type 2 diabetics with metabolic syndrome, coronary disease, complications and early death.
People with type 2 diabetes are being asked to change deeply ingrained habits around food and exercise to ward off yet unseen future dangers. With little or no instruction, guidance, help and support, they're being told to take preventive measures against something not present and yet to come. Similarly, ask yourself how many New Year's resolutions you've kept this year?
If you doubt that each type of diabetes is equally serious here's the proof.
MYTH: Type 2 diabetes is not as serious as type 1
TRUTH: Actually, type 1 and type 2 diabetes are equally serious, because they both can lead to the same devastating complications.
Medical professionals will tell you that both types of diabetes are serious because they can cause the same debilitating and life-threatening diabetic complications, including heart attack, stroke, nerve damage, kidney failure, blindness, amputation, gastro-paresis, and sexual dysfunction. Although type 1 and type 2 diabetes differ in their causes, treatments, and typical ages of onset, both conditions share a lack of insulin efficiency. In both cases, elevated blood glucose levels over time can damage large and small blood vessels throughout the body, resulting in complications.
People with type 2 diabetes are equally prone to complications
Barry got type 2 diabetes in his thirties. After a short burst of enthusiasm that involved following a healthful diet and getting regular physical activity at his tree-trimming business, he fell back into his old unhealthful eating habits and traded in his electric saw for an electric typewriter at a desk job. Within five or six years Barry's doctor put him on one oral medication, a few years later he added a second, and, approaching fifty, Barry started taking insulin before each meal. His most recent decade of living with diabetes Barry's blood sugars have been nearly picture-perfect, but earlier neglect caused Barry, over the past seven years, to have open-heart surgery and to develop neuropathy in both feet so painful that he can't walk much anymore. "I know this is from my sugars not being in control in the beginning," Barry said. "During that time, in fact, twice they found me out here in my yard in a semi-coma. I wasn't behaving then or checking my blood sugars like I do today."
Of the more than one hundred people with diabetes I've spoken with, those who had years of not managing their diabetes well, whether they have type 1 or type 2, generally had some complications, whereas those who managed it well generally suffered few or no complications. The exception was among people who got type 1 diabetes more than four decades ago, before blood-testing meters were available. Yet it seems that for each of these individuals, I've met someone who has lived with type 1 diabetes and, through the good fortune of her or his genes and discipline in managing diabetes, has lived a long life with relatively few complications.
Excerpt from "50 Diabetes Myths That Can Ruin Your Life and the
50 Diabetes Truths That Can Save It" by Riva Greenberg
It's time to rename type 1 diabetes. Just as breast cancer, lung cancer, melanoma, ovarian cancer, prostate cancer and other cancers each has its own identity, we deserve the same to advance efforts toward a cure. Insulin keeps us alive, but it is not a cure. And insulin happened in 1922.
Meanwhile, let's stop throwing rocks at each other. We need to recognize that type 1 and type 2 diabetes are different and respect what the other lives with. Until type 1 diabetes has its own name, it will benefit us all to be mindful that both type 1s and type 2s live with a chronic illness and that that takes a toll, just in different ways.
The author wishes to acknowledge Certified Diabetes Educator and Registered Nurse Kathy Spain and Certified Diabetes Educator and Diabetes Nurse Specialist Lynda Schultz Sardeson for their assistance.