Dr. Claudia Chaufan has had insulin-dependent diabetes for 25 years, and lives in Buenos Aires, Argentina. The original article in Spanish won the 3rd Price Merk Sharp & Dome Journalism and health Contest 1995

It was some time back in the seventies. As I struggled through my teen-age years, my thirst for revolution and first love poems nourished by Erich Fromm, Pablo Neruda and Herman Hesse were intruded upon by an untimely, inescapable, relentless insulin-dependent diabetes.
Neither anorexia nor bulimia nervosa, nor today’s worship of thinness were then part of the west landscape. Yet I did welcome a sudden weight loss. An urgent need to urinate would strike me at any time, in any place. I kept drinking soft drinks all day; what else, other than a soda, could quench such unbearable thirst? Perhaps this accounted for my bad moods; may be my ‘only-child-from-divorced parents’ condition (food for the psychiatrist for life!) was to blame. Fortunately, a routine test requested at school (for I had just turned thirteen and was beginning secondary school) prevented me from finding out about my diabetes after a coma.
The unexpected diagnosis was followed by the grown-ups’ questions. Children did not ask much in those days, neither was the average citizen so ‘into’ health and medicine as we are today.

Time and space hadhardly appeared in my metaphysical horizon, yet the thought that nothing less than my life was at stake began to haunt me.

All of a sudden a list of countless DOs and DON’Ts were given to match food and insulin so that blood sugar (What sugar Doctor?) did not get too high or too low. Every day, the nurse would be calling in for a shot. Almost overnight sickness and death stopped belonging to the ‘others’ only to become, so to speak, my next door neighbours. To make matters worse, because of some cryptic association I could not grasp, my future would from then on depend on my ‘good’ or ‘bad’ behaviour - meaning whether I ate right or failed to eat right. This did not only mean eating the right food, but also the right amount, at the right time. Exercise was supposed to be good - even indispensable - provided it ‘matched’ food and insulin, in order to avoid some scary ‘reaction’.
That was too much. I do not remember having even heard the word diabetes before that. It took me years of tears, suffering, stumbling and later a career in medicine and a speciality in diabetes to understand fully what it meant to have this condition as a partner for life.

DCCT: The Power of Numbers
Understanding diabetes as an organic entity was fairly easy. At the medical school I studied in detail the fatal outcome of diabetes complications, particularly when the patient ‘misbehaves’. It was not as easy, but certainly more enriching to learn to live with a potentially incapacitating condition in a dignified and even creative way. The Diabetes Control and Complications Trial 1993 (DCCT) - a major breakthrough in the history of the disease - revealed the harmful implications of high blood glucose. Diabetes is unforgiving. On the other hand, the DCCT also revealed that an optimum control of blood glucose can reduce, by up to 70%, the incidence of the scary ‘pathies’ (nephro, retino, neuro or angiopathies). Who’d dare argue against such numbers? It certainly pays for a person with diabetes to ‘be good’.
Furthermore, science and technology are now-a-days prodigal in resources and offer state-of-the-art equipment (blood-glucose monitors, human insulin, pumps, pens etc.). Keeping blood glucose levels in balance starts to resemble a jigsaw puzzle. The question is who is to fit the pieces into the right place?

Achieving Control - Sugar Blues
Keeping tight control guarantees a better future. Today, a person with diabetes can live ‘a normal life’. But how normal is it - especially for those of us who depend on insulin? Is it normal to have to count each carbohydrate of an ordinary breakfast cereal, with academic precision? Would a ‘normal’ person ever take a snack before diving into the pool, for fear of a reaction? It might look normal, yet none of us would call it simple. That my poor brain, apart from every day life’s usual concerns, must decide for this group of cells that for no reason went on strike for good, is anything but practical. On the other hand, as long as there is no cure for diabetes, and one wants to stay alive and healthy, the only alternative is to put up with this so called ‘normality’.

The Role of Health Care Team - The Power of Love
Because of the unique features of diabetes, it is the people with the diabetes, who make most of the decisions about everyday treatment, and who are, in turn, the main recipients of the benefits of proper control. So, how can the health care team be of any help? My being on both sides of the counter sheds some light on this question and opens up an array of possibilities, both academic and personal, that I deeply acknowledge.What I, or any other personwith diabetes, need from my doctor or any health care provider is support, understanding and empathy. I don’t need my doctor to criticize me if I miscalculate my insulin dose, or my blood glucose is too high because I could say ‘no’ at that party, or I had a bad day. It goes without saying that I need top-level information, yet, just as important, I need my doctor’s support and tolerance so I can put into practice, to the best of my capacity, all this information. My decision may be wrong simply because I cannot make a ‘better choice’ or I do not want to. I would also like my doctor to smile at me often and to understand that only God, or perhaps another person with diabetes, knows how hard it is to fight this never-ending battle each day. What I ultimately need from my doctor is care for me as a whole person, a care that goes beyond my foot or kidney.

The Role of the Patient - An Ounce of Practice is Worth More than a Pound of Theory
A person with diabetes should be able to use the tools necessary to achieve control, even though he might not fully understand the theory. Nonetheless, those of us with diabetes need to develop an ‘appropriate’ and ‘positive’ attitude if we are to put the best technical skills successfully into practice. And whatever our attitude is, it will be based inextricably upon our values and beliefs, regarding diabetes in particular and life in general.
Over the years, the treatment of diabetes has mainly dealt with three variables, food, exercise and pharmacotherapy. Every now and then we would hear something about education. Education has come a long way, and is today a classic component of the treatment of diabetes. But what is the concept ‘education’ all about? I once asked myself this question and this is what I came up with: education is a facilitating function, an ability to encourage in the other, to his or her utmost capacity to act and, above all, to choose according to unique expectations - even if these do not suit his or her own. Thus, in health, to educate would obviously go beyond the undoubtedly reasonable and self-evident advice that one should exercise, eat with moderation and avoid stress. This of course would involve much more than the mere transmission of skills and abilities.

To me, adopting a comprehensive approach to education is the biggest of challenges I face as a member of the health-care-team - an approach that involves the highest degree of empathy that one can achieve.
A chronic condition involves not only an organ or system, but rather the individual as a whole, emotions, family bonds, social insertion and spirituality. (In many cases, if not all, the condition leads to spiritual crises which bear an impact upon the individuals' very meaning of life).
For the sake of consistency with the principles, a treatment would be adequate only if it dealt with the person-patient as a whole, that is to say, within an emotional, socio-historic-cultural and spiritual context. Also, the patient should be given a protagonistic role when it comes to defining the best possible goals of the treatment.
Empathy and a loving attitude - as simple, unmeasurable and unscientific as that - are both indispensable ingredients of this approach to health care. There is no question that, ideally, fasting blood glucose should not exceed 110 mg/dl. just as it is better to be rich than poor, pretty than ugly, clever than foolish. By now I am fairly aware of my own needs as a person with diabetes. As a physician, I try to provide the very best quality information, hand in hand with the best spiritual support I am capable of in the least judgmental way possible. This should enable the patient to make informed choices about diabetes, according to his or her values, which might not necessarily match mine. In addition, provided I can keep an open attitude, I can be sensitive enough to the other persons’ needs, whatever these are - even realizing if a particular patient may or may not be ready or even willing to make a decision.

Epilogue
I guess that combining good information, emotional support and respect for one another can be useful not only regarding health care but also in other areas of life. We can agree that having diabetes is not nice, not fun, not desirable and that one would be better off without it. We people with diabetes are not all the same. In our precious uniqueness we are far more than a chronic complication or a psychological profile Diabetes, AIDS, or myocardial infarctions, do not make up one’s identify, let alone one’s essence. Finding who we are, transcending, achieving fulfillment and happiness in the ocean of everyday confusion is perhaps the only worthwhile destiny.
In the era of computer highways, that I am so fascinated with, I would really appreciate that the person I choose as my doctor, in some way, help me carry the burden of a chronic condition and walk along this road. After all, it was not me who said that not being happy or at least not attempting to - is the worst sin a man can ever make.
Reproduced from IDF Bulletin, Vol. 42, 1/97. n

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