I admit to nothing!!

The other day, my pal Scott Johnson wrote about his unfortunate recent DKA experience and I commented that there was no room for guilt (or the related self-blame) in his conversation, and I really meant it. The simple reality is that the patient cannot always be blamed for this stuff, and attempts to do so really work against effective self-care. But I'd be willing to bet that someone at the hospital he visited probably asked him what happened that lead to that situation, as if the patient was assuredly responsible (at least in part) for that situation. But I'd be willing to guess those same healthcare professionals would never dream of asking a cancer patient what they did to cause their disease.

On a similar note, a number of diabetes bloggers (including Kerri Morrone-Sparling, Rachel Baumgartel and Cherise Nicole have written posts recently about things they call diabetes "bad habits" or some other euphemistic term which frankly, seems to transfer or imply guilt and shift the blame away from the disease they are unfortunate enough to live with to the person with the disease instead. (You will note that I refrain from saying "their diabetes" because that implies ownership as if it was a house or car or pair of shoes they decided to buy, which couldn't be further from the truth -- I would never "buy" a disease like diabetes or exchange it for any other ailment, thank you very much).

About the only "bad" habit I actually agree with is Kerri's #6 item:

"6. Blame Game. And a sixth (but certainly not the last) bad diabetes habit that I have is my role in the blame game. I put a lot of pressure on myself to get things 'right' and when the diabetes outcome isn't what I'm hoping for, I tend to blame myself. I have to constantly remind myself that strong efforts and a decent attitude go a long way in this marathon, and I can't beat myself up for every low or high that crops up randomly. Diabetes isn't fair, and it isn't easy, and it sure as hell isn't my fault, so I just need to roll with the punches as gracefully as I can."

But it really p!$$es me off when individuals without diabetes (especially healthcare professionals such as doctors, public health officials, medical associations, insurance companies, nurses, diabetes educators, nutritionists, etc.) use such stupid and damaging terminology as "your diabetes" and instruct patients that it is their disease and they must "own" it.

My response: F.U.!

To the American Association of Diabetes Educators (AADE), let me make something perfectly clear: no place in the organization's Guidelines for the Practice of Diabetes Self-Management Education a... mentions "ownership" of diabetes, yet so many CDE's I have encountered over the years seems to believe that the patient needs to "own the disease" in order to manage it effectively.

Not true!!

One can be a very effective business manager without actually "owning" that business (although generous stock options and various other evolutions have blurred the distinction for many in recent years), ownership is NOT a requirement to be an effective manager, and the evidence on that, quite frankly, is pretty mixed and anything but clear-cut and decided either way.

Seriously, it's not MY diabetes, and the ONLY reason I have this stupid disease is because the medical profession has FAILED to cure me. In effect, that monumental failure to make me better and the resulting forcing me to live with a treatment protocol that, is only partially effective is a lame excuse for someone else's failure that is routinely passed off on the patient.

In the words of the former FDA Diabetes Care Chief Dr. Alexander Fleming in his journal submission to the March 2007 edition of the Journal of Diabetes Science and Technology (entitled "Prospects and Challenges for Islet Regeneration as a Treatment for Diabetes: A Review of Islet Neogenesis Associated Protein"):

"Despite the significant advances in insulin manufacture, modification, and delivery since that time, the treatment of the absolute insulin deficiency resulting from T1DM is very challenging. Insulin administration remains relatively hazardous and not fully effective in preventing complications, even if managed meticulously."

In this particular quote, Dr. Fleming and his colleagues also cited another study by SC Gough entitled "A review of human and analogue insulin trials" which was published in the November 15, 2006 edition of the medical journal Diabetes Research and Clinical Practice which demonstrated some sobering statistics to confirm intensive control's failure even when managed "meticulously".

Now, I could diatribe further on any number of these topics, but the reason I believe the medical/disease nomenclature currently used with diabetes is long overdue for major changes, starting with framing the disease as somehow belonging to the patient, is as follows.

The Oath of Hippocrates taken by all doctors is usually translated to include some language that says something along the lines of "I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone."

But while teaching patients how to manage a disease you cannot cure or eradicate may be the best they can do, I believe that the language deliberately chosen by the medical profession causes tremendous psychological harm and desparately needs to change. Ironically, as my friend Deb Butterfield (author of "Showdown with Diabetes") once eloquently wrote (I 've added a few words in brackets "[ ]" to emphasize some items worth calling attention to):

"To succeed with intensive therapy a person must take three or more daily injections of insulin (or insulin pump therapy), four or more daily blood glucose tests, and follow dietary instructions. The principle underlying the belief that more diabetes education will improve a person’s ability and/or desire to practice intensive insulin therapy is grounded in the [flawed] assumption that it is reasonable to expect a person to perform these acts every day for the rest of his or her life."

Deb goes on to write:

"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.

Diabetes is big business with powerful economic, social and political forces opening and closing doors to our treatments and cures. Billions of dollars are made from selling products to the diabetic community. Developing a cure costs money, and until there is a cure, there is no product to market. There is nothing to sell. At the large diabetes conferences, healthcare professionals are inundated with information about more accurate and simpler blood glucose monitors and insulin delivery systems, but the advocates for curing diabetes, and scientific advances to that end are woefully underrepresented."

Deb closes with the following statement:

"In order for this disease to be cured, there needs to be a fundamental shift in the way diabetes is viewed. We need to close the gap between the perception of diabetes as a controllable condition and the reality that it is one of the world’s oldest, deadliest, and most pervasive diseases."

The sobering part is that her quotes were written in 2004, and we really need to ask whether we've seen ANY fundamental changes in attitude since that time? Not much, I'm afraid.

Even more important, I fundamentally believe that the continued framing of diabetes management as somehow "belonging" to the patient and routinely using terminology to suggest or state disease ownership causes subtle but irreparable psychological damage (though researchers never seem to look into that little subject), which contributes to the widespread incidence of depression in patients with diabetes.

As Deb Butterfield said in another article on the DCCT (with my additions in brackets):

"When all is said and done, the fact remains that the rate and incidence of blindness, amputation, heart attacks, and kidney failure caused by diabetes—as reported by the NIH—continue to rise. Insurance companies and healthcare providers ponder this failure and, with few exceptions, conclude that 'educating diabetics' to adhere to an intensive regimen of injections and diets will [miraculously] solve the problem. This philosophy has been the cornerstone of diabetes management and consequently the 'blame' for secondary complications has shifted [away] from the disease itself to the person who has it."

We have more than 30 years of this philosophy in clinical practice, and the reality isn't all that convincing. The statistics, by and large, are pretty sad, actually. I could cite many statistics (just look at the ADA's website if you need some), but I don't feel compelled to do so. The reality is that after decades of this, the numbers don't look great. It's time to shift some focus away from trying to improve glycemic control towards curing diabetes, and by that, I mean all types.

People with type 1 diabetes have lead the way, incidentally, with the charitable organization known as the Juvenile Diabetes Research Foundation, which aims to fund $1 billion/year in cure-related research. That's a lot of cash towards curing one form of diabetes, but we cannot do it alone. Funds must also come from the pharmaceutical, biotechnology and medical device industries, as well as the U.S. National Institutes of Health, which frankly, sets much of the research agenda. Add to that, the Food and Drug Administration, which too often, have relied on using a reduced glycosated hemoglobin (e.g. "HbA1c") as a "surrogate" for improved patient outcomes, rather than a more intelligent approach of using multiple evaluation criteria.

The medical profession seems to enjoy giving themselves plenty of credit for what they refer to as "progress" in diabetes are over the years, while simultaneously not living up to some of their own monumental failures. In fact, when I attended the ADA Scientific Sessions in Washington, D.C., my reaction after the first night was one of, well ... disgust. I attended a cocktail party that was attended by all kinds of diabetes bigwigs, the likes of which included Robert Rizza, John Buse, and a few other self-proclaimed diabetes experts. I left that meeting with the sense of nausea and thinking that those individuals have given plenty of excuses for that failure, but that doesn't entitle them to transfer their failure to me as a patient.

One of my favorite quotes comes from a book review of the book "Bittersweet: Diabetes, Insulin, and the Transformation of Illness" by John Christopher Feudtner (a book I also reviewed here on this website a while back), and you'll find this quote in my list of "D-Quotes" in the right-hand margin of my blog. It comes from The New England Journal of Medicine:

"The transformation of disease, as exemplified by the case of diabetes, is a valuable and elegant concept that serves to remind us that the tally sheet for medical science must carry a column for debit as well as credit."

That debit column is presently missing from their conversation, as we see a lot of blame transference and shifting, but seldom (if any) owning up to it.

Now, the following is part diatribe, and part brutal fact. Diabetes remains as a disease, because of a failure to cure it, and also because of a continued fixation (above all else) on glycemic control rather than a fixation on finding one or more cures. One look no further than the medical journals to see how disproportionate the publications are weighed towards glycemic control rather than studies and commentaries related to disease eradication and cures. For heaven's sake, how many more studies do we really need on glycemic control? That needs to be a closed chapter, folks. The benefits are known, but there are seldom studies into why so few patients actually achieve this lofty goal. When they do look into it, the result is usually to transfer blame away from the treatment protocol itself to say, lack of insurance coverage or some other convenient excuse. Why not just admit it's a lofty theory that's incredibly hard to achive, even with all the tools that exist (many of which patients must struggle to get coverage for, BTW)? I won't even address conflicts-of-interest, but the medical profession has a sloppy track record there, folks.

Also, the medical profession is quite afraid to actually use the term "cure" in almost any context, a practice that really needs to be questioned. They need to abandon the fear to use that term, and to start using it more freely, or, I believe, we'll never actually see a cure emerge.

The language of diabetes has been shaped almost exclusively by individuals who do not have diabetes. That's a big, huge problem, and one which needs to change. Patients with diabetes need to be a part of the equation, or there is risk that the medical profession's already abysmal track record on this disease will continue.

Let me just close by noting that I am ENTITLED to complain about this disease, because I never, ever, ever, ever get a break from it. That, my friends, is entitlement.

Don't anyone dare try to deny me that right, or you'll get an earful you might not be prepared for. I require an outlet to deal with it, and if complaining to anyone who will listen helps, so be it.

Plus, I'm sick of hearing comments about how "so and so really didn't take care of themselves, if they had, they wouldn't have lost their leg, their vision, or whatever other horrible diabetes complication they may have suffered" from people whose diabetes knowledge comes from watching daytime television and maybe an occasional newspaper article. No one with cancer takes blame for their disease, and no one with diabetes shouldn't have to, either. Ironically, recent research has showed that eating a diet loaded with carbohydrates may actually help to fuel cancer, but the same cannot be proven unequivocally about any type of diabetes.

I feel SOOOOOOOO much better after getting that off my mind!

If feeling "in control" helps you to deal with diabetes, great, but just because it works for you doesn't mean it will work for me or anyone else with diabetes. I need an outlet to vent my frustration.

BTW, I'll take compliments and even legitimate (meaning substantiated) critiques, but don't even bother if you just want to disagree but aren't willing to back your comments up with actual data or science. I'm really not in the mood for that kind of conversation, and I do moderate comments on this blog.

Views: 6

Comment by Sarah Jane on September 8, 2009 at 7:04pm
That is sure a different perspective! I think that it's better to think of your health as something that you "own." I own my health and my body, and that is what I take care of. Diabetes is like a tricky fuel injector. Wish I could replace my pancreas as easy as I can my fuel injector.
Comment by Gerri on September 8, 2009 at 11:00pm
Ok, here's a compliment. I thoroughly enjoyed your hard-hitting, honest & eloquently presented "tirade." Actually, I wish there was more anger & outrage aimed square where it's needed. Wish more PWD would stand up & scream.

Yes, it's an improvement not to have to pee on sticks & have glucometers (even though they're not accurate) & all the other hugely profitable devices & meds, but these have shifted the responsibility/blame more heavily on PWD. Hey, you've got all these fancy tools, so use them for tighter control. How about the new colors & bells & whistles? If you can't achieve perfection, not the fault of big pharm, manufacturers & doctors. The fault lies with those pesky patients. NO it does not!

How many of us dread going to the doctor because of the disapproval we'll receive, which further perpetuates the shame/blame game? What's the reason behind that high, how come you had a low? Oh sorry, must be my fault. What did I do wrong? Indeed, management is not sufficient.

I bristle hearing the "owning" psycho babble. I'm paying for this disease in every sense imaginable, but I don't own it. It owns me. Can I sell it on eBay:)

The language framing the dialogue is skewed. Language is the most powerful ally or a most powerful enemy. The terms of the discussion are often set by outsiders, whatever the issue is, unless the real constituents loudly & consistently demand to be included. Taking power away from firmly entrenched authorities isn't easy since power only yields what it must to survive, but it can be done. Makes it harder when the serfs embrace their serfdom & perpetuate it themselves.

My education is in anthropology. A course which made a lasting impression was called "Magic, Science & Religion." Students were charged with defining the differences between the three. Clever professor to phrase it this way because there aren't significant differences. Each requires belief that something is attainable, a prescribed methodology to attain results, an expert or authority who sets the terms & the most important factor that keeps the system intact despite evidence to the contrary--operator error. If the magic, science or religion fails to produce the desired results, it's not the fault of the fundamental belief system. It's the fault of the practitioner. The magic spell wasn't performed properly, the religious devotee isn't worthy, the scientist miscalculated. Sorry for the detour, but it reminds me of what we're dealing with & what we're up against.
Comment by Kelly Rawlings on September 10, 2009 at 5:22pm
There's nothing like righteous diabetes anger! Thanks for sharing.

I agree, no one else should tell me to own my disease. But if I decide I want to own it, that's my perogative. What I enjoy (OK, not enjoy in the way I enjoy my family or Harry Potter or gardening. Maybe "appreciate" is a better term) about figuring out how to keep and tighten my control is the challenge. Because although I don't want blame for what other people may term "failures," (high A1C, background retinopathy, whatever) I do want credit for my "successes" (on-target A1C with no severe and very few mildly serious lows, great bp, great cholesterol, and finding lots of fellow people with diabetes to connect with). In 36 years, I have gotten better at control. Don't always nail it. But I'm OK with that. And I'm proud, proud, proud of the way I bear this extra burden in life.

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