Wednesday, February 03, 2010

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!)

18 comments:

Cara said...

My parents were told 10 years....24 years ago.
I like to think of myself as normal....but my definition of normal is NOT what other people would consider normal. So in reality, I'm not normal. And deep down I know that.
The title of my blog says it all "Every Day, Every Hour, Every Minute". It's always there. Maybe not at the forefront. But it's there nonetheless.
Great post, by the way. :)

Lindsey said...

Agreed.
There was one meal the other week where I felt like a "normal" person... We walked into the restaurant, sat down, ordered, and just started to eat. It was a moment of "wow, that was nice - wish it could always be like that." However, it really wasn't normal still - cause instead of testing and injecting in the restaurant, like I usually would, I tested and injected in the car.
oh well, it just makes me a stronger person inside.
You guys rule!

mollyjade said...

I think "new normal" is one of the hardest things to convey to outsiders. Most people when confronted with diabetes think, "I could never watch what I eat or take shots," when really, those aren't the hard issues to deal with. A lot of the difficulty of diabetes is the mental stuff. And maybe that's exacerbated by everyone saying how easy it should be.

Araby62 (a.k.a. Kathy) said...

I miss being able to sleep through the night without getting up to test. I miss being able to exercise and not worry about what it will do to my blood sugar. I miss being able to drink orange juice just because I wanted to, not to treat a low. I miss not having to worry every day, and especially not worrying my family/husband on my behalf.

There is nothing normal about being dependent on the contents of little glass bottles that other people make, or the system of delivery of those bottles. I tell myself that we are stronger and tougher than most because we're not 'normal', but the truth remains that we are also more fragile.

I know your cure question was probably rhetorical, but my parents were told I'd live to see a cure. That was in 1983 :-( Guess I have to stick around a few more years...

Bennet said...

Great post Scott. I do have one small nit to pick with this bit: "I think people with diabetes need to accept their inevitable failings."

I don't see inevitable variations of diabetes as PWD's failings. That is kinda playing into the blame game. My thoughts on ownership, guilt and failing were changed by the following blog post. The guy who wrote it is f-ing brilliant:

http://sstrumello.blogspot.com/2009/09/tueday-tirade.html

Love Ya / Mean It
Bennet

Allison Blass said...

I'm confused: Are you saying that we can't ever live normal lives or that we can live normal lives, just differently?

My "abnormal" life is only the diabetes. Yes, I have to pack more stuff and yes, diabetes can make me feel physically ill, and yes, I may or may not get complications, and yes, diabetes is a pain-in-the-ass mentally, and yes, I will never have "normal non-diabetic blood sugars."

I have had a plenty normal life, outside of living with diabetes. I have parents who love me, a boyfriend who loves me, a normal, well-paying job that I am good at, I traveled to Europe, I went to prom, I have my driver's license, I have friend who I can grab a beer with (you know, if I liked beer)...

I refuse to let diabetes dictate whether or not my life is successful, and to hell with normal. If everybody is different, than different is normal. There are plenty of other things people have to do that I don't have to do, so who's to say?

As for "spontaneity" no one has true spontaneity. If you have a job, a spouse, or children, spontaneity is GONE. And if you don't have one of those, you're probably underage so who cares?

George said...

This is such a good post. Our normal is not normal at all. I think those who say that only make it easy for non-diabetics to judge us as negligent.

Carol said...

You said a lot in this post that I do my best to push to the back of my mind as I soldier on day by day. But it is still there, and you are right, living with diabetes is NOT normal. After winding up in tears of frustration on my (attempted) run this morning due to wild blood sugar swings, I am very in touch with that. Thanks for posting something so raw and real.

Michael Hoskins said...

Scott. Great blog post. I think you're right on, as far as saying that we must redefine "normal."

But one thing should be clear, I think: Just because we're diabetic, doesn't mean that we can't achieve anything we want despite our diabetes. Think the athletes and stories you've pointed out show that. We can accomplish anything we want, just the same as what "normal" non-diabetics can put their minds to. We just do it in our own ways.

For us, Living with Diabetes is a "normal" component in our daily lives. It may not be what we're meant to endure in this short time on Earth, but we make due and establish our own senese of "normality" as it applies to us.

Anonymous said...

Scott--great post.

As a non-diabetic, I've sat 'just outside the arena' for 45 years. As some commenters have said, 'normal' may merely be semantics. But quite frankly, diabetes management precludes true normalcy. Now I know we can ask: "Who is truly normal." As a non-diabetic, I have issues that might define me as 'not normal' . . . but still, I do NOT have to measure every bite I eat, consider every expenditure of energy, and inject myself multiple times a day (to say nothing of bG pricks). When I get a cold, or the flu, or a serious cut, or an ingrown toenail--I never have to worry that my very life is at risk. I don't have to excuse myself from the dessert line, and be satisfied with compliments of "such discipline and self-restraint."

I've been fortunate to never have been called on to manage husband's diabetes (he's never been unconscious due to lows, nor in a coma) . . . but the possibility that such a thing could happen does, indeed, influence spontaneity and responsibility. Probably the most disheartening aspects of what I've witnessed over the years is unwarranted feeilings of guilt and the need to overachieve. Those seem to be incorporated into many diabetics' definition of normal. Maybe that is why so many truly excel at whatever they do. Having some mental issues of my own--guilt is a heavy burden (even when underserved) . . .and something that cannot be alleviated with better numbers, 'atta boys' from our docs, or even a convenient mood-altering, feel-good pill.

Honest dialog by medical professionals--circumventing discussions of 'normal'--might be a constant reminder to THEM that a CURE, not more treatment, would establish a true baseline for NORMALCY.

Melody

Scott said...

Thank you, everyone for your comments.

I'll try to respond to some of the questions or issues that were raised. For Allison Blass' question, I am saying that the definition of "normal" is redefined when diabetes is present. Diabetes does not dictate whether you are successful, in fact, an argument can be made that is one reason many people with diabetes ARE successful, because it requires a level of committment and discipline that people without diabetes don't comprehend. On the sponteneity issue, I would add that encompasses more than simply planning ahead. For example, many people work as independent contractors where they aren't actually employed by the companies they work for, rather they are self-employed and often are compensated at much higher rates, and can negotiate work schedules that are sometimes more flexible than employees of the same company might be able to. While it is theoretically possible for a PWD to do this, not many do because of the issue with insurance being such a necessity. That flexibility and sponteneity is also gone, along with the ability to simply pick up and go someplace that is more typically associated with sponteneity. But that is not often a choice the way choosing to be married or have children is, so that makes life with diabetes different.

I don't necessarily agree that we are personally responsible for less-than-perfect glycemic control, so I hope Bennet doesn't believe that. But I do believe that PWD and their caregivers too often blame themselves for failure to attain that, when it may not realistically be possible. I think the word "control" is totally inappropriate when it comes to diabetes management, at least in the case with type 1 (type 2's often have less glycemic variability, so the notion of control may be more realistic for them).

Finally, I don't want anyone to get the impession that I think we cannot achive anything we want because of diabetes, but I think Kris Freeman said it best in that we often have to work harder to get it, yet few people acknowledge or even realize that!

The reality is that ONLY a cure, not stop-gaps and marginal improvements to treatment will resolve this issue, and the medical profession in particular needs to acknowledge that. Ironically, last November, the American Diabetes Association formed a "committee" and that committee essentially stated that it's consensus was there will never be a cure for any form of diabetes, only permanent remission. To me, that is more semantics than anything else, as I'd take permanent remission over the B.S. of trying to replicate islet fuction 24/7/365 any time!

Scott

Bernard said...

Scott, thank you for a thought provoking post. What I think is that someone with diabetes (any type) can do almost anything that a healthy person can do. But it's far from normal. Testing, injecting, number crunching, carb counting, etc. so you can live your life is nowhere close to normal. Thanks for the callout about my Kris Freeman interview.

Anonymous said...

Scott,

Thank you for the post. It does paint a much more realistic picture of the present state of diabetes which each of us has to cope with in our own way. In 1960, after having T1 diabetes for 4 years, I recognized that some modifications in my hopes and dreams were about to take place. I basically had the grades and endorsement from my state representative to enter the Naval Academy . . . but I realized then that diabetes would not allow me to “be all that you can be.” Let’s take off the rose-colored glasses, recognize there IS a great deal that diabetics can accomplish on their way to achieving a very satisfying life, but there ARE venues that have been eliminated. If I look at this event in a more philosophical way, I might consider that I escaped the possibility of being MIA in Viet Nam. So, does diabetes make my glass half full, or half empty?

Today’s fast-acting, peaky, unpredictable insulins—along with stringent diabetic protocols—do make it less likely to enjoy spontaneity regarding life in the fast lane. I have spent 36 hours stranded on the Interstate in a snowstorm (before cell phones) with only a bottle of insulin and a can of cocoa mix. I’ve survived pneumonia, the flu, and several serious surgeries. Yet I will probably only be remembered by many as a reckless, non-compliant diabetic. The truth is I’ve had a wonderful life despite the inconveniences.

A friend of mine still goes to an endocrinologist that I fired years ago. He said (recently) that he saw this physician at a soccer game and mentioned me by name. The first words out of the doc’s mouth were, “I thought he would be dead by now.” Reality means living life in a manner one sees fit, enjoy it to the fullest, and don’t let your physician, JDRF (and other charities), the government and the pharmaceutical industry become your robot-masters.

Brent

the poor diabetic said...

First of all diabetes is an incurable disease and I am emphasizing on the disease part, so you spend a whole lifetime trying to fight the symptoms and prevent complications, their is nothing normal about that my friend and trying to demand normalcy out of it is a fruitless endeavor. I think as a society, we try too hard to perpetuate conformity. The same argument could be made with the level of sensitivity to racial issues.
"I am sick (diabetic) and this is how I treat my disease, am not normal or abnormal, get to know my disease and treat me based on that information" that's what I say, everything else is fodder.

Kevin Pammett said...

Thank you SO MUCH, Scott, for saying all this. It speaks so very directly to me I'm amazed. It's been such a struggle to reconcile "everyone" saying that I "can live a normal life" - to reconcile that with what I know deep down, which is that THAT is a lie, a really big lie. Living with Type 1 since May of 1985 has surely taught me that.

If found your blog because I've been searching for places where I can communicate more with people using the OmniPod, and/but THIS article has touched a need that I wasn't even aware that I had. Thank you SO MUCH !!!

And btw: I am a member of TuDiabetes, as you may recall. I guess I need to frequent the site a bit more.

Laura said...

Fabulous and thought-provoking post, as usual.

This "big lie" (in the last commenter's words) is at the heart of many of our daily interactions with the people around us. I'm certainly guilty of perpetuating that myth of "normal life with diabetes," since passing as healthy and well controlled nets me privileges and freedoms I want. Driving, travel, living independently, working in a high-performance profession I enjoy, hanging onto my wages and health insurance, gaining and keeping people's trust...all that requires passing as a person with consistent good health. I'm vigilant, and so far, I do maintain consistent good health. But a failed infusion set, a meter error, a soft drink switch-up, some unexpected snow shoveling, or the complication chickens coming home to roost could disrupt this facade anytime.

Besides all that..the basic idea of deliberately misrepresenting yourself to your fellow man is disturbing in itself.

Brenda F. Bell said...

I linked to this post from your comment on Justin's Misbehaving Pancreas. I understand your assessment, but as usual, I'm going to turn it on it's ear.

Coming of age in the late 1970's, in the tail end of the "burn your bra" era of the "women's liberation movement", young women were indoctrinated that if we were to become pregnant without (1) planning the pregnancy at least six months to a year in advance (getting to and maintaining correct weight for height, perfect physical fitness, AND taking prenatal vitamins), (2) maintaining perfect physical fitness at least until the child had been weaned, and (3) the child's father doing similarly, we would be abusing the yet-to-be-conceived child.

The message I received from this, in terms of health in general (and women's health in particular) is pretty much the message every overweight person, every person with diabetes or hypertension, and every person with any sort of food sensitivity, allergy, or autoimmune response receives: we must be always aware of everything we eat in ingredients, preparation method, and portions, we must schedule at least two hours of elite-level athletic exercise daily (one hour cardio, one-half hour weights, one-half hour stretching and yoga/pilates), and we must maintain an upper-middle-class-or-better income (and lifestyle) or else we are failures and we might as well just lie down and die.

In short, the tasks involved in keeping a handle on one's diabetes is what "normal" is supposed to be for everyone else.

Whether or not that makes for a healthy, non-neurotic general population is another question entirely.

Scott S said...

Brenda,

Your point is interesting ... but (you KNEW there would be a but!) ... it presumes that #1) the general population is not properly caring for themselves and #2) that these tasks are perfectly acceptable for a person to continue every day until the day they die. While item #1 is up for debate, I would dare say item #2 is NOT ... to succeed in managing a chronic condition of any type requires a level of self-care endurance that is not expected of anyone, and carries with it the psychological baggage that the patient is purposely and ultimately to blame for anything that goes wrong. Unfortunately, dosing insulin in a non-physiological manner with comparatively crude tools (they may be marginally better than they were 30 years ago, but as Alan Spiegel, Dr. Allen M. Spiegel, M.D. former Director of the U.S. NIH/NIDDK once testified before U.S. Congress "Insulin therapy, via daily injections or a pump, is a poor substitute for the body's exquisitely precise regulation of blood glucose by insulin-producing pancreatic beta cells." With that being said, I would argue that the expectation that patients can "control" (a misnomer by virtually any definition) is not "normal" and is an unrealistic and unreasonable burden placed on patients which frankly, many doctors themselves cannot accomplish if they had to, much less expect that of their patients.

Scott