Redefining "Normal"

I have an admission to make: I really can’t stand all the complete B.S. (I really wanted to use the real word bull$#!t, but I’ll try to censor myself in the first sentence of today’s diatribe) about PWD’s living normal lives with this disease. It’s not being honest, yet everyone who writes about it seems intent on perpetuating the myth that life with diabetes is somehow normal, or at least close to normal. Newsflash: It’s definitely NOT normal.

What got me started on all of this was a fairly recent (or at least recently published) interview with Christopher Thomas (of the Diabetic Rockstar fame) on the apprently recently-resurrected “Diabetes Blog”. In that interview, the Diabetes Rockstar himself states:

“Diabetics aren’t damaged goods,” he said. “It’s not that all of us were overweight people who didn’t take care of ourselves. We’re just like everyone else. We have to be careful, but we can lead normal lives.”

I think what he’s really saying is that if you have diabetes, you’re just going to have to change your definition of what normal means.

Doctors routinely give a less-than-truthful line about living a so-called “normal” life with diabetes. The reality is it’s little more than window-dressing the ugly truth: when you live with diabetes, you’re going to be forced to re-define what “normal” actually means. Call it anything you like, but as “Showdown With Diabetes” author Deb Butterfield once eloquently wrote “intensive insulin therapy is grounded in the assumption that it is reasonable to expect a person to perform these acts every day for the rest of his or her life.”

I don’t think Deb realized just how profound that statement was when she wrote it (maybe she did), but that’s a pretty profound statement.

More recently, comedienne, d-blogger and fashion model Kelly Kunik said it another way “diabetes expects so much from the people whose lives it infiltrates”, and she’s absolutely right.

Diabetes Rising author Dan Hurley (see my book review here) used a really great analogy in his recent NPR interview that’s a pretty good one (and I’ll go out on a limb by saying I think Mr. Hurley is more forthcoming about reality of life with diabetes in that brief NPR interview than he is in his entire new book, perhaps because he has less time to talk about it with NPR):

“This disease they say is like a baby that never stops crying. It never stops demanding your attention.”

The closing statement from the American Diabetes Association’s ever-so-uplifting Diabetes Forecast magazine (that’s sarcasm folks, this publication routinely spews the same crap about how normal it is from whomever they interview) interview with three-time U.S. Olympic cross-country skier Kris Freeman in response to the question about what kids with type 1 diabetes should learn from him. In response, Freeman also responds a bit more candidly than the author might have liked:

“As long as you are always on top of it, anything is possible with this disease. You just have to work harder.”

Incidentally, d-blogger Bernard Farrell’s interview with Kris Freeman is much, much better, catch it here.

The sad reality is that once you’re diagnosed with type 1 diabetes (or type 2, for that matter), your life will be irreparably changed forever. One of the first things to disappear is spontaneity – that will be gone forever, as you’ll be required to plan everything, and lug a bag of supplies with you – everywhere.

Even long-time type 1 advocate Mary Tyler Moore, in her recent book, in spite of some of my migsivings about letting her editors have too much control over her book’s content, did address this (catch my review here):

“Spontaneity is one of the first of life’s pleasures that’s lost when diabetes appears.”

Amen to that!!

Some Truth About Diabetes Treatment Is Needed

So at the core of my diatribe today is why can’t the medical establishment be more honest with patients?

Again, my friend Deb Butterfield had something to say about this back in the summer of 2002, and I think she was right.

“Just last week at a small ‘diabetes family night,’ three of the five mothers of diabetic children there said that they had been told not to worry too much about their children’s blood sugars, that children are resilient to complications. No doubt, the doctors, with good intentions, are trying to ease the worries of the mothers and children with their platitudes. Using reassuring voices and sweet smiles, nurses convey the message that if you do as you’re told, then everything will be okay – just as in the NDEP campaign, they are telling their patients that diabetes is controllable, and if they control it, they will be fine. But the truth is that no study, not even the Diabetes Control and Complications Trial, has ever been able to show that diabetes management can prevent complications. Of course, in the absence of a cure, diabetes management is important to slow the progression and delay the onset of complications as much as possible, but we should not delude the public, or ourselves, that management is sufficient. At best, it is an inadequate treatment until a cure is found.”

Well said!

But the charade is up, folks. Living with diabetes is not “normal” and anyone who tries to tell you otherwise is lying, or at least misrepresenting the facts.

Mr. Hurley also candidly states (in the afforementioned NPR interview) another observation about life with diabetes and just how truly “controllable” the disease really is:

“I think we need to accept that we are human beings and we were not put here to control our blood sugar and that we do the best we can, and if dieticians and doctors could begin to accept a little better that we’re not screw-ups because our sugar is running a little high, we’re human beings, and we’ve got more important things to do with our life than stare at our blood sugar all day. We do our best, we try, and you know, I think people with diabetes need to accept their inevitable failings. It is inevitable. There is no way to keep your sugars normal all the time, and you do your best and you try.”

Another d-blogger, Eric Devine, laments “Will It Ever Be Enough?” Not if you were to listen to public health officials, doctors or both.

The more important question is: How do we convince the medical profession to start talking about diabetes more honestly, something they seem to be reluctant to do? (How many of you have heard a cure is 5-10 years away? Do you still believe that? Didn’t think so!)