Dr. Claudia Chaufan is an endocrinologist and diabetes educator. She has also had Type 1 diabetes for over 25 years. She shares with us an article that won an award at a national journalism contest in her native Argentina.
Medicine, Health, and the Paradigmatic Crisis
of the End of the Millennium:
IT'S MY LIFE AFTER ALL
by Claudia Chaufan
The liberated soul sees disease as
another remarkable journey.
The Tao of Healing
Each human being is a unique point of view
on the universe.
José Ortega y Gasset
It was some time around the seventies. As I struggled through my teenage years, my thirst for revolution and my first love poems nourished by Erich Fromm, Pablo Neruda and Herman Hesse, were intruded by an untimely, inescapable, relentless insulin-dependent diabetes.
Neither anorexia nor bulimia nervosa, nor today's worship of thinness were then part of the western world landscape. Yet I did welcome a sudden weight loss. Before I even realized, an imperative need to urinate would strike me at any time, in any place. I kept drinking soft drinks all day; for what else, rather than a soda, could quench such unbearable thirst? Perhaps this could account for my lousy mood, maybe my "only-child-from-divorced-parents" condition -- food for the psychiatrist for life-- was the one to blame...Thank God, a routine test requested by my school -I was beginning junior high- prevented my "début" in diabetes with a coma.
The unexpected diagnosis was followed by the grownups' questions -- kids didn't ask much in those days, neither was the average citizen so much "into" health and medicine as we are today. Any diabetics in the family, ma'am? you see, your daughter's pancreas, her what?? insulin... what do you mean INSULIN? well...shots...shots? for how long? FOR EVER!
"For ever", "never", just empty words... Time and space were humbly sticking out on my metaphysical horizon, yet the thought that nothing less than my life was at stake began to haunt me. What about my sweet tooth? Was that the end of ice-cream, or chocolate..? well, in fact just one little spoonfull; consistency in the amounts, sweetheart, consistency. All of a sudden a list of countless DO'S and DONT'S, schedules to match food and insulin so that blood sugar -- what sugar, doc? -- would not go too high or too low. Every day, nurse calling in for a little shot, just once a day, sweety, don't worry ma'am, she'll eventually do it herself. Almost overnight sickness and death stopped belonging to "others'" to turn into my next door neighbors. To make matters worse, and due to some cryptic association I couldn't grasp, my future would from then on depend on my "good" or "misbehavior" - this meaning whether I ate or failed to eat "right", which did not only mean eating the "right" food, but also the "right" amount, at the "right" time. Exercise was supposed to be good -- so what? -- provided it "matched" food and insulin, in order to avoid some scary "reaction"; beg your pardon, doc?
That was too much. I don't even remember having heard the word diabetes before that. It took me years, tears, suffering, tumbling, even a career in medicine and a specialty in diabetes to fully understand what it meant to have this condition as a partner for life.
Who's Gonna Bell the Cat?Understanding diabetes as an organic entity was fairly easy. At medical school I studied in detail the fatal outcome of diabetes complications, especially when the patient "misbehaves". It was not so easy -yet far more enriching- to learn to live with a potentially incapacitating condition, and be able to do so in a dignified and -could I say ?- creative way.
True, statistics today are adamant -who dares against numbers? The Diabetes Control and Complications Trial (DCCT) -a major breakthrough in the history of the disease- revealed the harmful implications of high blood glucose. Who hasn't heard of a neighbor who was left blind, or some distant relative who lost a leg, or that friend who ended up plugged to a hemodialysis machine? Diabetes is unforgiving. The DCCT proved that an optimum control of glycemia can reduce up to 70% the incidence of the scary "pathies" -- nephro, retino, neuro or angiopathies. It certainly pays to be a "good diabetic".
It is also true that science and technology are nowadays prodigal in resources and promising in perspectives (new state-of -the-art blood-glucose monitors, human insulin, pumps, pens). Keeping in balance starts to look like a jigsaw puzzle. Someone just has to fit the pieces into the right place. Question is, who?
Sugar BluesKeeping tight control somewhat guarantees a hopeful future; a person with diabetes can live a "normal" life, but... how "normal" is it -especially for those of us whose lives depend on insulin- to have the need to count each "carb" of an ordinary breakfast cereal with academic precision? Do "normal" people take a snack before diving into the pool, for fear of a reaction? Is it "normal" for five-year-old Johnny -my patient by the way- to have HIS mother pricking his fingers day in, day out. . . yet knowing that no effort will make up for that fine balancing capacity lost for ever by the little pancreas? It might look normal, but none of us would call it simple. That my poor brain, aside from everyday life's usual concerns, must think for that bunch of cells who decided to go on strike for good, is anything but practical. I always had the secret fantasy my brain was meant for more transcendental affairs. On the other hand, and for as long as there is no definite cure, if you are diabetic AND expect to keep in good shape, you better put up with this "normality". I belong to this group, and certainly ambition a little beyond that.
"Lo cortés no quita lo valiente" (You might be right...yet don't need to be rude!)Because of diabetes' unique features, people bearing this condition make themselves most of the decisions concerning everyday treatment, and are in turn the main recipients of the benefits of "proper control". So, how can my doctor -medicine in broad terms- help me in any way? Being at both sides of the counter facilitated some answers and opened before me an array of possibilities -academic and personal- which I deeply acknowledge.
What I need from my doctor, me or any plain folk with diabetes is support, understanding, empathy -without detriment to his best medical training. I need him not to criticize me if I miscalculated my insulin, or my glycemias were too high because I could not say "no" at that party, or I just had a bad day. My decisions may be "wrong" simply because I cannot make a "better" choice, or I just do not want to. I sure need top-level information. But what's more important, I need my doctor's patience so I can successfully put into practice all this information I never chose to learn. It would also be really nice if he treated me warmly, smiled at me, and understood that only God -- perhaps another diabetic- knows how hard it is to fight every day. What I ultimately need from my doctor is his concern about me as a whole person, a concern that goes beyond my foot or kidney. We can't do much about international politics, wars or the collapse of our civilization on a strictly individual basis so, what else is left but being nice to our next door neighbor?
Where's the Pilot?Over the years, the treatment of diabetes has mainly dealt with three variables: food, exercise and pharmacotherapy. Every now and then we heard about education. An "educated" diabetic is not the one who shows good manners at the table, but he who can rather use the tools regarding everyday control, he knows in a way how to "steer the wheel". We would call him "a good driver". A good driver might know little about the theory of driving, and ignore altogether the principles of mechanics. But he sure can put this theory into practice.
We people with diabetes can put the best technical skills into practice, if our knowledge of the theory is supported by an accompanying attitude. This attitude is based on values, beliefs regarding diabetes in particular, and life in its broadest sense.
Why not consider that adopting a comprehensive approach to education is the biggest of challenges we face as members of the health team, even more so when it comes to people affected by increasingly more common chronic conditions, where the "healthy" and "not so healthy" mingle indistinguishably in the street. This approach to education would involve much more than the mere communication of skills and abilities. It would also go beyond the most reasonable, self-evident advice that one should exercise, eat with moderation and avoid stress.
I am calling on the highest degree of empathy that we can achieve -the same we would expect for ourselves- combined with the best scientific and technical knowledge. In other words, I am aiming at that superlatively human health-facilitating function defined as the ability to encourage in the individual his or her utmost capacity to do, and above all to choose according to their expectations. Even though they do not suit our own.
I recently had the pleasure to meet a group of people who work from this perspective. They belong to the American Association of Diabetes Educators. They held their annual convention in Boston last August. Mostly just "plain soldiers" of the health care team -nurses, dietitians, maybe a few social workers and clinical psychologists, surprisingly for me even pharmacists!- overwhelmingly women. Very scarce physicians, or men of any profession (except for accompanying spouses at the evening parties!). I leave possible interpretations for some other article. I discovered in Boston that what I feel responds to an elementary common sense has already been baptized as the "Empowerment Approach." Just two words -the usual Anglo-Saxon capacity to make complex thoughts simple.
A New Health Care ModelThe "Empowerment Approach" is founded on the following principles:
- a chronic condition such as diabetes requires that the patient make over 90% of treatment decisions. Not that he or she finds it's fun: there is just no choice.
- a chronic condition involves not only an organ or system, but rather the individual as a whole, his or her emotions, family bonds and social insertion. In many cases, if not all, the condition leads to spiritual crises which bear an impact upon the individual's very life project.
For the sake of consistency with the principles, we conclude that a treatment is adequate when:
- it deals with the person-patient as a whole, within an emotional, socio-historic-cultural and spiritual context.
- the patient is given a protagonistic role when it comes to defining the best possible goals of the treatment.
It is only obvious that ideally -among other things- fasting blood glucose should not exceed 110 mg/dl. Just as it is better to be rich than poor, healthy than sick, clever than foolish.
From my being a person with diabetes, I am aware of my needs. From my physician's suit, I try to provide the very best information and spiritual support I am capable of, leaving aside judgment or prejudice. The patient will in turn make his or her informed choices. About diabetes in particular and life in general, according to his or her values, which might not necessarily match mine.
EpilogueI was deeply moved to discover that over four thousand Americans apparently shared this idea about health care, and -why not?- about the search of fulfillment as human beings. I would dare say that at least 25 percent of the audience at the Boston Convention were consistent in practice with their theory. Personally, I have always preferred thinking in terms of man-unit rather than insulin units, though I consider myself competent enough for the latter. Furthermore, such an approach has more than once allowed me to feel reconciled with slightly tougher aspects of medicine.
I guess that combining good information, emotional support and respect for the other can be useful not only regarding health care, but also in other concerns of life. The "...well, it's my life after all", might ring a bell to more than one parent. I'll save this thought for some other time.
We can agree that having diabetes is not nice, nor fun, nor desirable. That one would be better off without it. That high blood glucose will cause trouble. That diabetes determines profound aspects in the life of a person. We can also agree that a disease groups people according to signs and symptoms, morbidity and mortality rates, even cost impact upon the health care system. Yet, it does not unify the individual. We people with diabetes are not all the same. In our very precious uniqueness we are much more than a chronic complication, or a psychological profile. Diabetes -- or AIDS, or myocardial infarctions -- do not make up our identity nor our essence. Finding this essence -- happiness? -- in the ocean of everyday confusion, is perhaps the only worthwhile destiny.
In the era of computer highways which I am so enthusiastic about, I would really appreciate that the one person I chose as my doctor would, in some way, help me walk along this road. After all, it was not me who said that not being happy -- or not at least attempting to -- is "the worst sin a man can ever make" [Jorge Luis Borges, Argentine writer].
Claudia Chaufan, M.D. lives in Argentina and can be reached via e-mail at email@example.com.
Last Updated: Thursday August 29, 2002 20:59:46
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